tag:blogger.com,1999:blog-13015033379758781372024-03-06T19:59:10.897+13:00Little Miss AutoimmuneHelen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.comBlogger137125tag:blogger.com,1999:blog-1301503337975878137.post-17831558874208911492020-03-11T12:35:00.001+13:002020-03-11T12:35:45.809+13:00Spoon Dominoes<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJiYHGeqSOk8INi_PIZ_oHXdV21qaJilUac7U2dBMva5c-jTzesuy5YbA56raPG1tPJxZ2DgC2CqjSlbsLg_yKbGt63Nz-YYDk4c6V7suuYADnyGmOnnfqYFK_LhdGUHBAtVfpUupEUUqY/s1600/Domino+Spoons.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Imagine contains: A bundle of vintage spoons, positioned as if falling one after the other to the side" border="0" data-original-height="1600" data-original-width="1067" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJiYHGeqSOk8INi_PIZ_oHXdV21qaJilUac7U2dBMva5c-jTzesuy5YbA56raPG1tPJxZ2DgC2CqjSlbsLg_yKbGt63Nz-YYDk4c6V7suuYADnyGmOnnfqYFK_LhdGUHBAtVfpUupEUUqY/s320/Domino+Spoons.jpg" title="" width="213" /></a><span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">My shoes fell apart
the other day, and by fall apart I mean completely fell apart, unfixable,
unwearable. It’s not really surprising – I’ve been wearing them for (at a
guess) 15 years now, and they’ve been threatening to fall apart for the last
six months or so. Added to that, that’s pretty much the state of every shoe in
my house, except for the ones I turned out to be allergic to but haven’t yet
had the energy to do anything about getting rid of.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">I haven’t gone shoe
shopping, because it’s difficult to find shoes that are both comfortable on
arthritic feet, and that I’m not allergic to, and I’ve taken on too many things
at the moment, so just didn’t have the spoons to spare on anything else.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">So at the weekend,
after my shoes fell apart, I wore a pair that I’m mildly allergic to, and that
are slightly too tight to be comfortable, to walk to work, and then to stand
all day during my shift, and then to walk home again. My feet hurt all day, but
my feet always hurt, so I didn’t think anything of it, until I got home and
found my foot was so thoroughly covered in dried blood, I couldn’t get my sock
off.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">And while the wound on
my foot was small, lupus makes me heal slowly, and what started out as a
blister is now an ulcer. And then the immunocompromising part of my medications
joined the party, and last night my toe became alarmingly hot, red and pus
covered, to the point I started wondering if I would be able to balance if it
got amputated.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">And suddenly, what
started out as a funny moment, when my shoe fell apart in my hand, had become a
rather gross and painful problem. And I still haven’t bought new shoes, because
now it’s too painful to walk, let alone try on footwear.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">This will all be fine,
I’m off to the doctor this afternoon, and I’m sure it will all be pretty simple
to get under control, but it did make me think about the domino effect that
often comes into play with chronic illnesses. <o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">It’s often just <i>slightly</i>
harder than normal to do a task, and you have slightly less energy to do it
with, but the consequences of not doing it are slightly worse than they would
be for a healthy person, and the consequences of those consequences are
slightly more dramatic, and suddenly all those “slightlys” have built up into a
much more serious problem than it ever would have been for someone able bodied.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">When people think of
chronic illness or disability, I think they mostly picture the big stuff – the not
being able to get out of bed, or move around freely, but it’s often the
everyday, little things that build up and make illness hard. The big stuff –
the falls, the hospital admissions – you just go into survival mode and get
through it. It’s the constant nature of the everyday difficulties that wear you
down with their unrelenting nature, making everything just that tiny bit worse. <o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">I don’t know what the
solution to this is, but I do know that next time, I’ll find the goddamn spoons to
buy some shoes. <o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: Arial, Helvetica, sans-serif;">Thanks for reading,<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="color: purple; font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Little Miss Autoimmune<o:p></o:p></i></span></span></div>
<br />Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-80185361631371609902020-01-06T12:39:00.001+13:002020-01-06T12:44:32.023+13:00Sorry is a Sometimes Word<span style="font-family: "arial" , "helvetica" , sans-serif;">A few years ago, I wrote a piece about </span><a href="https://littlemissautoimmune.blogspot.com/2016/01/not-sorry-thankful.html" style="font-family: arial, helvetica, sans-serif;" target="_blank">apologising in relation to my illnesses</a><span style="font-family: "arial" , "helvetica" , sans-serif;">, the unintentional emotional manipulation that can
accompany apologies, and why often, thanking people for their support is a much
more appropriate response. In the time since then, I have gotten a lot better
at saying “thank you” rather than “sorry” when someone helps me … but I still
apologise a lot in other circumstances.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Recently, someone told me off for this. His reasoning – if
you are apologising constantly, letting it become nothing more than a habit,
then it loses authenticity. He asked what I would then do if I’d really done
something wrong, and needed to give a genuine apology?<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Cue moment of existential crisis as I tried to work out
whether apologising to someone who’s visibly annoyed at you for apologising
will make the situation better or worse and vaguely considered option three –
just slowly sliding under the table while humming Tracy Chapman.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Now to be fair, I had just issued about fifteen apologies in
the space of a few minutes, and once I managed to stifle my automatic need to
give fifteen more for the awkwardness, I could see where he was coming from.
This wasn’t a perspective I had considered before, but I’ve certainly had my
share of relationships and friendships in the past where the apologies were
frequent, but the changes of behaviour were notably absent, until the word
“sorry” started to leave a pit in my stomach. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I am genuinely feeling guilt when I’m saying I’m sorry, and
there is an authentic desire to make the other person feel better, including
examining and changing my own behaviour where needed. However, I’m often
apologising in situations where my guilt is unwarranted, or the perceived
slight exists only in my mind.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So that leaves me with two questions: <o:p></o:p></span></div>
<h2>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large; font-weight: normal;">Why am I apologising so much, and is it a problem?</span></h2>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">At the time, the reason I gave is that I’m tending to take
responsibility for things which aren’t my fault, including other people’s
feelings or discomfort. Illness and disability do make a lot of people
uncomfortable, and I know my tendency to start stories with things like “So
this one time part of my back died for no reason… it’s okay, it grew back
eventually…” do not help with this. While my twisted sense of humour, and
ability to find the funny side of everything, is something I love about myself,
it is also something I feel the need to apologise for when I see it make people
squirm. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When I stop to consider it, I think there are also a few
other contributing factors here. Of course, anxiety and depression probably
play a part, particularly in the instance above as I had been going through an unusually
bad mental health patch at the time, after being really well on that front
since I got Bindi.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I do notice that when I’m in a good place, the apologies are
noticeably reduced, or at the very least, the reasons behind them are more
logical. But when I’m not sleeping and therefore slipping into a darker
headspace, it can start to feel like I need to apologise for my very existence,
let alone anything else. The nervous energy and overthinking aspect of anxiety
doesn’t help with this either, as if you think about anything for too long you
can convince yourself it’s 1) a problem and 2) your fault. There can also be an
element of “duck and cover” to interacting with new people when you have PTSD (or
other forms of anxiety) until you figure out whether they are safe, and you can
relax with them. Even mild irritation from a stranger can feel like it could be
a threat, and so appeasing the person with pre-emptive apologies becomes a part
of self-preservation.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Which leads into the question of whether it’s a problem. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://ideas.ted.com/sorry-to-bother-you-but-do-you-say-sorry-too-much-what-to-say-instead/" target="_blank">Sociologist, Maja Jovanovic</a>, </span><span style="font-family: "arial" , "helvetica" , sans-serif;">believes that unnecessary apologies hurt us, making us smaller
and weakening what we have to say. I have started to notice there is a level of
self-fulfilling prophecy to this, as rather than appeasing my guilt, apologising
lots makes me feel even more like there is something wrong with me that I must
apologise for. I notice my body language changing when I say “I’m sorry”,
shrinking in, as if I am diminished by my mistakes, illnesses and flaws – something
I whole-heartedly do not believe.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">What I like to call the “<a href="https://littlemissautoimmune.blogspot.com/2011/09/happiness-is.html" target="_blank">Labyrinth Effect</a>” also starts to come into play. If you treat someone or
something as if they are a threat, you associate them with that fear and they
ultimately become more intimidating to you. In the words of David Bowie’s
Jareth:<o:p></o:p></span></div>
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<blockquote class="tr_bq">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">“You have cowered before me, </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">and I was frightening.”</span></blockquote>
<h2>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large; font-weight: normal;">Breaking the Habit</span></h2>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">All of this has made me question the effect apologies are having
on my own self-esteem, the people around me, and the way I interact with both. So,
I have been trying to break my apology habit, but it has led to a strange
development and the discovery of one more possible reason why I apologise so
much.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I decided to start small, addressing one particular form of
apologies. I made a point of not apologising if someone bumped into me, or in
some other way caused a disruption, instead simply accepting their apology and
moving on with my day. I figured this would be an easy one to address, as I
know I’m not actually at fault in these situations; I’m just apologising
because… New Zealand. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But here’s where it gets interesting.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">On multiple occasions, a stranger bumped into me and, when I
said nothing, they came out with comments along the lines of “Oh, that’s okay,
love”. I had kept my pledge to myself not to apologise, but despite this,
strangers were accepting apologies I hadn’t given and didn’t owe. And not just
one or two people, this happened on multiple occasions.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Now, I don’t entirely understand what’s happening here, but
my best guess is that people are seeing Bindi and my dark sunglasses, assuming
I’m blind and therefore deciding the accident must be my fault, despite
evidence to the contrary. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have to admit, after the first few times this happened, I
did start to wonder if I was somehow causing these accidents, and you may well
be wondering why so many people bump into me. I guess the truth lies somewhere
in between. If someone is looking at their phone or walking backwards away from
a conversation still focused on their companion, an able-bodied person may be
able to quickly dodge out of the way, but it’s trickier for me when I’m
sometimes a little unsteady on my feet and have a dog (and sometimes walking
stick) to negotiate. But regardless of my speed, if you’re not looking, it’s
not the responsibility of anyone else on the street to get out of your way, and
certainly not their fault if you crash into them. In fact, in many of these
instances, I was standing completely still, to the side of the pavement out of
the way, when the person walked into me.<o:p></o:p></span></div>
<h2>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large; font-weight: normal;">Expectation</span></h2>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This did make me consider the role expectation plays in
excessive apologies. In these instances, it was very clear an apology was
expected from me, whether or not I genuinely owed one. But I think it extends
beyond this. Not to turn this into an norms vs crips argument, but I do think
there is a level of expectation that disabled and chronically ill people will
behave in certain ways, one of those being apologising for the impact on
able-bodied people’s desire to do things in inaccessible ways.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Asking for any kind of access assistance – even if it’s a
legal right – sometimes leads you to being made to feel like an inconvenience,
as if your presence is only allowed by obligation, but that really you are not
wanted or welcome. Apologising can appease some of this, allowing for a more
friendly and less awkward environment for all. For example, you learn very
quickly that the best way to ensure your food is actually gluten free when
you’re coeliac is to start your order with an apology for being annoying, and
end it with a self-deprecating joke. Otherwise, you risk an eye roll, a comment
about pretentious hipsters, and a guessing game as to whether your food is
actually safe to eat. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Even if the words “I’m sorry” don’t cross my lips, I’ve
learnt to present certain pieces of information about my health with an apology
in my voice. Not because I’m really ashamed of them, but because I am
consciously crossing the taboo of discussing illness, mortality and admitting
to weaknesses rather than just “being positive”. To not apologise in these
circumstances, usually leads to questions of whether it’s really that bad if I’m
not miserable, and difficulty getting access needs acknowledged or met. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In a confusing contradiction, I find I must also apologise
if I DON’T want to talk about my health, as it’s seen as entirely unreasonable
to have an assistance dog, mobility aid, or other visible sign of disability in
public, but not be willing to satiate the curiosity of every tom, dick and
harry as to why. People often ask invasive questions and then are horribly
uncomfortable with the answers, yet take no responsibility for the situation,
laying all of that at my feet instead. This isn’t just a disability thing, of
course. This is something many of us experience, for example, with the question
“when are you going to have babies” and the answer “I can’t/don’t want to/have
just recently spawned a half alien half human hybrid”. Somehow it becomes the
place of the answerer to apologise for the discomfort, rather than the invasive-question-asker
to acknowledge they were over-stepping.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The undercurrent of all of this seems to be that warranted
or not – I feel I am expected to apologise frequently, and simultaneously to feel
bad about how often I apologise.<o:p></o:p></span></div>
<h2>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large; font-weight: normal;">Refuting the Expectation</span></h2>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">But this is not to let myself off the hook. Just because the
world potentially expects something from me, it doesn’t mean I have to give it.
The world has a lot of expectations of what disability looks like – most of
them negative – and I do not meet many of them. Continuing to apologise in this
way is reinforcing the belief that it’s valid to expect apologies, and while
it’s currently socially acceptable to feel discomfort around disability and
illness, or irritated at having to accommodate differences, that doesn’t have
to be the way it will be in the future. Not apologising may be one way to allow
people to acknowledge their own discomfort, examine it and maybe even address and
eradicate it.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">While exploring all of this has made me realise the apology
habit is going to be harder than I thought to break, it’s made me more
determined to do it. Whether it’s not apologising for someone bumping into me,
not taking responsibility for anyone’s discomfort with my answers to invasive health
or baby questions, or simply asking for gluten free food without calling myself
annoying, I strongly suspect each small step will make a difference.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading, <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Little Miss Autoimmune<o:p></o:p></i></span></div>
<br />Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-9978164937589943122019-12-31T22:38:00.000+13:002020-01-01T17:31:04.978+13:00The Difference A Decade Makes(Cross posted from <a href="https://www.facebook.com/Little-Miss-Autoimmune-154849307887628/?tn-str=k*F" target="_blank">Facebook</a>)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8F4Tb6SVPJE8bIvcNrKBW8liXDN9GyWBj4zhEyDJxIvIB1v2G-P1j7rdZdN0zFsdCxWhClgDRjGLA0RaZviGrvPNSKwKZ3c17xqtT9uAqBpWkxS5thwiNhzo_dGIijOizWguG1iL574nM/s1600/80634974_2788780004494532_4116122929354244096_n.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8F4Tb6SVPJE8bIvcNrKBW8liXDN9GyWBj4zhEyDJxIvIB1v2G-P1j7rdZdN0zFsdCxWhClgDRjGLA0RaZviGrvPNSKwKZ3c17xqtT9uAqBpWkxS5thwiNhzo_dGIijOizWguG1iL574nM/s320/80634974_2788780004494532_4116122929354244096_n.png" width="320" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Happy New Year, everyone! (It's already new year's eve here in New Zealand, with the decade ending in just a few hours.)<br /><br />At the end of 2009, I was on a lot of steroids and pain killers, neither of which were really helping my autoimmune arthritis. My weight was ballooning, my muscles were weakening in an alarming way, and I could barely walk. I was very depressed and anxious, and it didn't seem like any of it would ever get any better.<br /><br />But... a lot can change in 10 years.<br /><br />I had friends and family who loved and supported me, a counsellor who really helped, and a nurse and GP who fought for me, at times against my own specialists. The nurse got me on an amazing miracle drug, I went into a partial remission, and got my life back on track.<br /><br />But of course life is never that simple. There have been many ups and seriously low downs, many extra diagnoses, and the amazing life-changing gift of an assistance dog, from the fabulous team at <a href="https://www.facebook.com/adnztrust/?__tn__=K-R&eid=ARAm-Py_Si4Xr8_IgjOcOAiFfZ9sHP8Ex85I5MxIHfkNqPQDu_EcozletFTwxYeJnZ-Kpk5CtEtZcUuz&fref=mentions&__xts__%5B0%5D=68.ARBlbuwyViYieArnV1C-nyFuRiZy9PWzSnPRWxP-OgTQL-WyrRV1tx83qDo0RB66_KiRnV9tdPEX_B0EPcIsB_VuMALndNPzSjag74Pd54YQmWbgptzlaeKBAcdlREoqtT1b6HO_ogU9quGWCDs4-1DsVtsAxJHn_EXd1TnHNsxN50M5hx_inKcS052YYP6eefGr11HhKdP7Ewn-vW74JF127WR1IeXWCUgcz_nls9fBjuVDZhumQptyxqakD8w57iBknQubv3lOBA10Of2PLUyIZ8TRCdhZxNqCuXbKGTtRGmbs96g0J7ip6knqH9_0QULofp2bI42O4wu7KWAAWWZmKQ">Assistance Dogs New Zealand</a>.<br /><br />I've written books, fallen in and out of love, and had so many joyful, exciting, weird and wonderful moments.<br /><br />My body has done some f**king weird shit, and it's been both hilarious and terrifying, but I'm glad to say most of the time the laughter has won. And I'm even more glad to say, I am ending this decade happy, and with more health and strength than I ever could have imagined ten years ago.<br /><br />Living with chronic illness and disability is so so hard at times, but part of what makes it hard is the fact that it's so changeable. Don't ever forget, sometimes that change can be for the good.<br /><br /> <img src="https://static.xx.fbcdn.net/images/emoji.php/v9/f6c/1/16/2764.png" /> <span style="font-size: large;"><i>Little Miss Autoimmune</i></span></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-33435424685311516652019-12-09T20:15:00.000+13:002019-12-09T20:21:37.820+13:00Sweat, Create, Meditate Part Two (Mindful Creativity)<br />
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The other day, I found
myself describing depression as being like the noise an air conditioner makes. The
sound is always there, but much of the time you can tune it out. It becomes a background
fixture of the environment, that you give little or no attention to. But then
there are days where the noise draws your focus – perhaps because you got less
sleep, or you’re stressed – and suddenly that noise you are normally able to
tune out seems a whole lot louder. It breaks into your thoughts and interrupts
your concentration, but you’re still able to function, and with
some time, you’ll go back to filtering the sound out again. And then there are
days when it’s all your can hear. You wonder how you ever did anything other
than listen to that drone. It becomes all-consuming and thinking of anything
else – doing anything else – becomes impossible. The sound become your life for
a while, until you’re able to get back on top of things.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I realised later that
the same could be said of anxiety, chronic pain, and other physical health
problems. In fact, when I’m very anxious, I do sometimes experience it as a roaring
sound in my head.<o:p></o:p></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In <a href="https://littlemissautoimmune.blogspot.com/2019/12/sweat-create-meditate-30-days-of-yoga.html" target="_blank">my last post</a>, I
talked about how movement has helped me in getting myself back on track after a
not so great period with my health. One of the other things that has helped a
lot has been making a point to spend time being mindfully creative. I’m lucky
enough to have a job which is creatively based, and I am very thankful for
that, but it does mean that sometimes projects slip from being an enjoyable
creative practice, to a stressful, time-pressured work one. Even outside of
work, many of my creative projects this year have been very goal/completion
focused, such as making weighted blankets as part of my <a href="https://assistancedogstrust.org.nz/" target="_blank">Assistance Dog NZ</a>
fundraising. This focus on the final product, rather than the creative journey,
has often meant I find myself “making on auto-pilot”, which goes against the
important mindful aspect.<o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Spending time doing
creative activities purely for the fun of them – playing and
experimenting with no pressure to make something useful or “good” - means that my
focus is only on the process. It pulls away from that air conditioning noise,
and into the present moment. I find when I am able to make time for that playful
creativity, within a few minutes my breathing is slowing, my muscles relaxing,
and the roaring in my head quieting. Allowing myself that time really makes a
big difference in getting myself back to a good place. Traditional mindfulness
has never really worked for me, despite putting in a lot of time trying over
the years, but there’s something about “mindful making” that helps the process
for me.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Of course, when you’re
stressed, it’s difficult to find time for creativity, and thinking of projects
can feel intimidating. But creativity doesn’t have to mean a huge procedure.
Here are a few of the ways I found to be creative over the last couple of months. Whatever method
it is you use, I can really recommend using mindful creativity as a way to
manage health stuff.</span></span><br />
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Making a different meal/baking
a new recipe</span></span></h4>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sometimes something as
simple as making a meal or baking can be a great way to add creativity to your
life. With food allergies, I find myself making the same things over and over.
Taking the time to find new recipes – even if they’re comprised of many of the
same ingredients – can be an enjoyable and relaxing way to spend an evening.</span></span><br />
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Knitting groups</span></span></h4>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I went to a couple of
different knitting groups over the last couple of months. Both were free, and
one of them offered lessons as well. I wasn’t doing anything particularly
impressive – I’ve just been making peggy squares out of the ends of balls of
wool. I may stitch them into a blanket at some point, or they may just be left
as is. Either way the process was calming.</span></span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><br />
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Workshops</span></span></h4>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Here in Wellington,
there are often a range of different workshops you can attend. Many of them are
free/koha entry. I attended a koha candle making workshop with a friend, which
was a lovely way to spend an afternoon. The candles were very simple to make, but ended up looking quite impressive.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk_SS2oQ27kjqdDV4fcSCnXqpccYKyny1G_YqwA8nwItInTNNV350nyDB_-zxoy0pbWpkuyTGGtmdMIHCiMwxtk32mJI8ci3ScXzTg8Yroq_8dKS-7apYekRe8A2rW-JAviEUp5biqRIrU/s1600/Candles.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Photograph of two home made candles in jars, one with a gold lid on, the other open and with a ribbon tied around the neck of the jar." border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk_SS2oQ27kjqdDV4fcSCnXqpccYKyny1G_YqwA8nwItInTNNV350nyDB_-zxoy0pbWpkuyTGGtmdMIHCiMwxtk32mJI8ci3ScXzTg8Yroq_8dKS-7apYekRe8A2rW-JAviEUp5biqRIrU/s320/Candles.jpg" title="" width="320" /></a></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Rearranging/redecorating</span></span></h4>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">If the budget is low,
finding ways to be creative can be a bit harder, but sometimes just rearranging
furniture, reordering books/other items on a shelf or decorating something with
scrap materials can be a cost-free way to be mindful. I ended up decorating a
shelf with pictures of butterflies I cut from an empty tissue box. The end effect was quite striking, even though it came from rubbish materials. Scrap booking, collage or papier-mache all make great use of free waste materials.</span></span><br />
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Paintvine/painting/colouring
in</span></span></h4>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://paintvine.co.nz/" target="_blank">Paintvine</a> was the most
expensive of my projects over the last couple of months. This is an evening,
where you complete a guided painting with a group while drinking wine. I’ve
done a couple of these now, and I really enjoyed the experience. I’ve heard
some cities have similar groups such as group paint by numbers, and Bob Ross
evenings. I found this particularly effective, as I had to concentrate so hard
on the painting, I didn't have any mental space for intrusive thoughts. Regular painting, or colouring in would also be effective for this.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwi_2lKfZ8HYJSC2EZgvI4MjNtfExJipmRdgQCzcP-OxEUThZIn6FzWr29TQPxmq4f3MBuILuUYHXf1fSeWNCCQO46JIoXdZQl1GcJE3IGh7TsSOLCVOH4MMPZzWPSjVtu4uONxandEOcj/s1600/Paintvine.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Simple red, white, pink and blue painting of a huge wave with a mountain and a sky and sun in the background." border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwi_2lKfZ8HYJSC2EZgvI4MjNtfExJipmRdgQCzcP-OxEUThZIn6FzWr29TQPxmq4f3MBuILuUYHXf1fSeWNCCQO46JIoXdZQl1GcJE3IGh7TsSOLCVOH4MMPZzWPSjVtu4uONxandEOcj/s320/Paintvine.jpg" title="" width="320" /></a></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Wellington
Conversations/Creative Events</span></span></h4>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Not strictly a
creative practice, but one of the other very helpful things I did was attend an
up-cycled fashion show, from <a href="https://www.vinnies-wellington.org.nz/vinnies-resew" target="_blank">Vinnies Re Sew</a> and attend a <a href="https://www.wellingtonconversations.nz/" target="_blank">Wellington Conversations</a> event on the topic
of “What is beautiful here?” Both left me feeling creatively inspired and
uplifted. Wellington Conversations will be continuing in the new year, and I’d
really recommend heading along for a dose of community and connection if you
get the chance. <o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading,<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: purple; font-size: large;"><i>Little Miss Autoimmune</i></span><o:p></o:p></span></span></div>
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<br />Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-14514798828726407842019-12-01T09:36:00.000+13:002019-12-01T11:18:19.867+13:00Sweat, Create, Meditate (30 Days of Yoga)<span style="font-family: "arial" , "helvetica" , sans-serif;">When I was typing out
the title for this post, I accidentally wrote “</span><b style="font-family: arial, helvetica, sans-serif;">Swear</b><span style="font-family: "arial" , "helvetica" , sans-serif;">, create, meditate”
and honestly, that would fit too.</span><br />
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">A couple of months ago,
I had a pretty big blip. The details of what happened aren’t too important, but
it was one of those perfect storm episodes where my physical health, mental
health and sleep disorder all went to pot at once. Which came first? I don’t
really know, but once it started to go downhill, they all fed into each other.
There were, of course, a few external factors – a stressful period of
work/business, the change of season, some personal disappointments – but over
the years, I’ve learned it’s less about what’s going on and more about how I
respond to it.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">There are a few things
that always seem to help when I am not doing so well – movement, mindful
creativity and reconnecting with myself and with friends. Of course, actually remembering
to do those things, and then finding the motivation to get out of bed and do <i>anything</i>,
are separate problems, but one issue at a time! Perhaps this blog post will
serve as a reminder for me to do them next time.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I wanted to write
particularly about the movement part of this today. While I know that exercise
is really good for me when I am unwell, it can also be a bit of a risky business
when things aren’t great. I’m having some body image issues at the moment, as I’ve
put on a fair bit of weight over the last year. While this is kind of a good
thing, after <a href="https://littlemissautoimmune.blogspot.com/2015/08/body-image-part-i-dont-even-know-anymore.html" target="_blank">years of not absorbing food properly</a>, it can also lead to some
unhealthy attitudes and obsessions with exercise and weight loss. To try and
counter this, I tried to hold the quote “Exercise is a celebration of what your
body can do, not a punishment for what you ate” in my mind.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">“Exercise is a
celebration of what your body can do, not a punishment for what you ate.”</span></span></blockquote>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">This led me to <a href="https://www.youtube.com/user/yogawithadriene/videos" target="_blank">30 Daysof Yoga with Adriene</a> and <a href="https://www.youtube.com/user/TheFitnessMarshall" target="_blank">The Fitness Marshall</a> on YouTube. Adriene has such a
peaceful, loving, gentle way of working that I found myself focusing less on
the exercise and more on just taking that time to build my own emotional and
physical strength. The Fitness Marshall dances are so much fun, it really does
feel like a celebration and just a joyful thing to be doing, regardless of the physical
benefits. I can’t dance in the same way I could pre-illness, but both the yoga
and dance videos have proven to me that I can do more than I realised, and over
the 30 days, I have regained strength and flexibility I thought was lost
forever.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Of course, it wasn’t
all smooth sailing. On day two, I completely broke down, doing far more crying
than yoga because my emotional state was still pretty fragile from sleep
deprivation, and there was one day where I had to drop down into child’s pose
halfway through the practice, as my blood pressure was too low to continue.
There were also a number of days where my assistance dog tried to join in, and
I collapsed out of poses, laughing, as she licked my face or climbed over and underneath
me (and one day where she bit my boob while I was lying on the floor– not sure
what that was about!) But my intention for the 30 days was simply to show up on
the metaphorical yoga mat every day, and I’m so glad I did. Taking that time
for myself has really helped me to get back on track.<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The good thing about
this blip has been that even at the worst points, I knew it was temporary. When
you’re in a bad place, be it physical, mental or sleep related, it can be
really hard to see any way out of it. It feels like it will never get better,
and more than that, it feels like it has never been any better before. The bad
place is just all consuming. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; margin-left: 1em; margin-right: 1em;"><img alt="Image contains: photograph of the character Eleanor from the TV show The Good Place, holding a glass of wine, with the text "Holy mother forking shirtballs, this is the dad place" overlayed." height="295" src="https://geeksoncoffee.com/wp-content/uploads/2019/07/holy-mother-forking.jpg" title="" width="400" /></span></div>
<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Being able to hold on to the insight that it is
always temporary and will pass is a huge step forward for me, and one I hope I
will be able to hold on to when the next (temporary) blip arises. <o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading,<o:p></o:p></span></span></div>
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<span style="mso-ansi-language: EN-NZ;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: purple; font-size: x-large;"><i>Little Miss Autoimmune</i></span><o:p></o:p></span></span></div>
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<br />Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com1tag:blogger.com,1999:blog-1301503337975878137.post-8525756834051720362019-09-16T20:23:00.004+12:002019-09-16T20:28:00.206+12:00Disability Pride It's been a while since I blogged. Life has been it's usual mess of weird, wonderful and everything in between.<br />
<br />
I just wanted to share this video with you. It's disability pride week, and as part of that filmmaker Rajeev Mishra and I collaborated on this film of one of my spoken word pieces.<br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/WRRsJdTT6fI/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/WRRsJdTT6fI?feature=player_embedded" width="320"></iframe><br />
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Hope you enjoy!<br />
<span style="color: purple; font-size: large;"><i>Little Miss Autoimmune</i></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-76809832445105773812019-01-26T10:02:00.001+13:002019-01-26T11:31:09.522+13:00Six Months on with Bindi<span style="font-family: "arial" , "helvetica" , sans-serif;">Strangers often come up to me and ask about Bindi. I mean, how could they not when she’s so cute? Most assume I’m training her, but when they find out she’s working with me, they generally have two questions:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>How long have you had her? </i>and <i>How have you found it?</i></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The answers?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Six months and <i>Life-changing.</i></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It’s hard to put into words how much of a difference Bindi has made for me. There are the obvious things. When my blood pressure is low or my joints are really sore, it’s such a relief to have her pick things up for me, so I don’t have to struggle down to the ground or risk passing out. When my legs are unsteady, having her beside me can keep me upright as we make our slow progress home. If I do end up falling, having her lying beside me with her head on my chest is a source of comfort and makes me feel less vulnerable. Also, she’s not been trained to do this, but she has somehow learned to pick up when my blood pressure is dropping and lets me know by biting on her lead or nudging my hands. She generally notices before I do, giving me time to sit down and avoid passing out. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHpkyR7-mLoNXXzQ-HtOOG8RPllPaob-B8DnBd-vnrIRjyZQ0UM0uiNR3N8Xdqo7xanWJ3yoSuV65mNpcUjQ4ZMIXwRQVKtTjG_Sga78tPv2-heL4Ysvo8Zvd0dKAivFM80kHVU1b6orlq/s1600/WP_20181004_001.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="717" data-original-width="1277" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHpkyR7-mLoNXXzQ-HtOOG8RPllPaob-B8DnBd-vnrIRjyZQ0UM0uiNR3N8Xdqo7xanWJ3yoSuV65mNpcUjQ4ZMIXwRQVKtTjG_Sga78tPv2-heL4Ysvo8Zvd0dKAivFM80kHVU1b6orlq/s320/WP_20181004_001.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sitting next to me, being my bodyguard after I fell down.</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In the last few months, I’ve developed retinal migraines. These are episodes where I get lights and colours obscuring my vision for around 15-20 minutes at a time. As you can imagine, it can be quite scary not being able to see anything, but again, Bindi’s presence has been really reassuring. With the help of Julie from Assistance Dogs New Zealand, Bindi has been learning to do some guiding, and will now locate and take me to a chair when prompted. Knowing she can do this means I’m not so worried about one of these episodes happening while I’m out. I feel like we’re a team, and whatever happens, we’ll be able to handle it.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Of course, my original reason for applying for an assistance dog was my <a href="http://littlemissautoimmune.blogspot.com/2017/11/when-you-really-have-tried-everything.html" target="_blank">sleep disorder</a>. This has also massively improved. I went from being genuinely scared that I was going to break my neck in my sleep, to having weeks where I don’t have any sleep disturbances. Having a person staying with me often made my sleep disorder worse, as their emotions and frustrations played into it, but Bindi’s inherently non-judgemental nature provides reassurance and comfort. When I do go sleep-wandering, I seem to do it in a less dangerous way now, as even if I’m running away from a nightmare, I factor Bindi into it. Whereas in the past I just got up and ran, often straight into a wall, my first thought now is to get Bindi away from whatever scary thing I’m dreaming. Since she’s reluctant to get out of bed in the middle of the night, it takes a while and gives me time to wake up properly. This isn’t something we could have predicted or trained her for, but it’s had such a positive effect regardless.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Then of course there is the emotional side of it. Having a soft little friend nearby at all times is just so heart-fillingly wonderful. I have so much love for Bindi, it’s hard to express. I don’t think there has ever been a time in my life before where I have laughed every single day. There is nothing like watching her play with her toys or do roly-polies down the bank at the park when she's off-duty. She does so many funny things and is just generally so cute it makes me smile every time I look at her. If I am ever sad, just sitting on the floor with her and playing is the best thing to make us both happy.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPK5B3828hAAOZxiL__2Cv7vriRXmbyhb4ZVHtma4cjKyMYys90eZrkxo1-ybVHbweqO19mCQUS89wyHrAvliM9uKG7CfzWwu7DA0LYTOcofRKfZLYo7rLAOMeEmoPrr6AAHMPfZl0Mszz/s1600/41818739_520853108358283_8324596481730281472_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPK5B3828hAAOZxiL__2Cv7vriRXmbyhb4ZVHtma4cjKyMYys90eZrkxo1-ybVHbweqO19mCQUS89wyHrAvliM9uKG7CfzWwu7DA0LYTOcofRKfZLYo7rLAOMeEmoPrr6AAHMPfZl0Mszz/s320/41818739_520853108358283_8324596481730281472_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying to be a lapdog and reminding me it's dinner time (while she's off-duty obviously!)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho5hj6q-DgUii1kabxbMyNeGtIr7g5r9ITJpzClexurC0HvfzMF_LuCe_yWOielJeIagpHSf3YnE8S0JzP2YBt9GAFuz0qiKZbc0Ciwn52XOkuD5-XKjzNu1eUEEkqHCKY_BWgt_lK51gj/s1600/WP_20190105_001.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="717" data-original-width="1277" height="177" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho5hj6q-DgUii1kabxbMyNeGtIr7g5r9ITJpzClexurC0HvfzMF_LuCe_yWOielJeIagpHSf3YnE8S0JzP2YBt9GAFuz0qiKZbc0Ciwn52XOkuD5-XKjzNu1eUEEkqHCKY_BWgt_lK51gj/s320/WP_20190105_001.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cuddling one of her toys</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Now, all of that stuff is great, but this is a situation where the whole equals more than the sum of the parts. The difference she makes to my life is just so much more than this. There really is only one way to describe it – life-changing.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">One of my neighbours commented that he was amazed by the change he’s seen in me since having Bindi. He works near the park we go to several times a day, and so sees us out walking. He asked if Bindi was for my anxiety, as he said he was really impressed with the visible change in my confidence. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The funny thing is, I wasn’t aware that I looked anxious before, nor had I noticed a change in my anxiety levels initially. It took me a while to realise what it was he was picking up on. It’s like Bindi has freed up a part of my brain. In the past, a part of me was constantly occupied with worrying about the things I mentioned above – falls, dropping things, my blood pressure, my lack of sleep. Now, I don’t have to constantly assess whether my legs are getting unsteady or if I’m at all dizzy, or wondering what horrible dream I’m going to have tonight, because I know I have a safety net if something goes wrong. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This is a cliché, but it’s like I’m been able to let out a breath I didn’t even know I was holding. I’m able to relax in a way I’ve never had the freedom to do before, and I’m so incredibly thankful to Bindi and Assistance Dogs New Zealand for that.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">If you’d like to support the incredible work Assistance Dogs New Zealand do, you can donate through my <a href="https://givealittle.co.nz/fundraiser/helenandpaddy" target="_blank">Givealittle page for ADNZ</a>, or consider <a href="https://assistancedogstrust.org.nz/meet-our-puppies/" target="_blank">sponsoring an ADNZ puppy</a>.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading,</span><br />
<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Little Miss Autoimmune</i></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com2tag:blogger.com,1999:blog-1301503337975878137.post-22634637234324258912018-10-18T13:40:00.000+13:002018-10-18T13:49:58.545+13:00Collaboration<span style="font-family: "arial" , "helvetica" , sans-serif;">In the past, I've tended to avoid collaborative projects. Or at least, I have since I've been sick. I worry about letting people down if I'm not able to complete tasks because of my health. I know that it's not entirely a rational worry, as in the past when I have worked on joint projects, I've tended to be the most reliable one in the group, but still the fear persists. That's probably also the reason why I'm self-employed rather than working for other people. When you're on your own, it doesn't matter if you don't complete a project - you just take a rest and start a new one when you're ready.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But there's only so much you can do on your own, especially when it comes to creative projects. As a playwright in particular, there's a point where you're probably going to need a director and you're <i>definitely</i> going to need some actors - the world only needs so many one-woman shows.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">At a certain point, you've got to start collaborating with other people to fill skill gaps, make bigger projects, and to challenge and expand your own abilities. The original problem remains, though. What happens if you get sick? Or in the case of chronic illness, run out of spoons? </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This year, I've been lucky enough to have been offered the opportunity to work on several cool projects - a theatre show called <a href="https://bats.co.nz/whats-on/the-memory-plays/" target="_blank">The Memory Plays</a>, a short story anthology called <a href="https://www.amazon.com/gp/product/B07JCCBK7Y/" target="_blank">Blood From a Stone: A twisted Villains Anthology</a>, and a shared launch for my and another author's new children's books. My health has been reasonably good lately, though still pretty up and down. Through trial, error and sheer stubbornness, I've managed to make it work with balancing several projects and managing my health, but it hasn't always been easy. Along the way I learnt a few things, which I thought might be useful for others also wanting to work collaboratively.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">1) One project at a time</span></h3>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Now, I didn't set out to work on several projects at once, it just kind of worked out that way. The thing is, projects have a way of growing and sometimes end up being a lot more work than you originally thought they would. Don't commit to a second (or third or fourth) project until you're certain of the scope of the one you're working on.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Before starting working on The Memory Plays project, I wasn't very familiar with Google Docs. In fact, one of the other writers had to walk me through it with child-friendly level instructions. It has been a godsend for my anxiety levels though. One of the things I worried about going into the project was: what would happen if I got really unwell and ended up in hospital? Knowing the rest of the crew had access to the same information, documents and emails I did helped a lot, as even if I was too unwell to do any kind of hand over, they would know where to look to pick up the pieces of what I'd been working on.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">3) No matter how busy, take time out if you're unwell</span></h3>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I've had some problems with my blood pressure lately, which, when it's bad, means my head feels like it's going to explode if I lift it and I pass out frequently. When I had bad episodes, at first I tried to drag my laptop into bed with me, to be able to keep working, but the work I did in this state was of pretty poor quality, and I ended up redoing it later. Going to sleep for a few hours or taking a day or two off meant I worked quicker and produced better quality work when I did get to it.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">4) If people don't hear your needs, say them louder</span></h3>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I knew some of the people I've been working with at the start of these projects, but not terribly well. They knew I had an illness, but not really how it affected me. Because I look well, it sometimes made it difficult to get them to understand that there are some things I just can't do. For example, it took a while for them to realise that I couldn't meet in places that are poorly accessible, because on any given day I may not be able to walk up stairs. It feels awkward to keep saying "no" to meeting places, and I did start to worry they thought I was being difficult, but it's just not worth using up all your spoons on getting to places. If you keep saying no, eventually they'll get it and start to factor accessibility in automatically. It may feel uncomfortable, but the next disabled person they meet will thank you for it.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Overall, I'm really glad I've had the chance to work on these projects. I kind of wish they hadn't all fallen at the same time, as it's been pretty rough on the spoons, but even that has been a real confidence boost. No matter what my health is doing, I know now I can still contribute and be reliable in shared work. I'm also really proud of how the projects have turned out.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">If you'd like to know more about the <a href="https://www.amazon.com/Blood-Stone-Twisted-Villains-Anthology/dp/1948668122/" target="_blank">Blood From a Stone Anthology</a>, and <a href="https://bats.co.nz/whats-on/the-memory-plays/" target="_blank">The Memory Plays</a>, scroll down for more details, otherwise I'll catch you next time. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for Reading,</span></div>
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<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Little Miss Autoimmune </i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>The Memory Plays</b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">30th Oct - 3rd Nov at BATS Theatre (Wellington, New Zealand). </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">One woman relives an argument with an old friend. Another spirals into questions about her strangely vivid dreams. A third can’t get over an ex, much to the chagrin of everyone who knows her.</span></div>
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All three are stuck in the past, and all three need to let go or risk damaging their present lives in the process.</div>
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Three plays spanning three decades jam-packed with drama, intrigue and comedy, The Memory Plays is an original anthology show featuring new work from three writers with vividly contrasting styles.</div>
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Book <a href="https://bats.co.nz/whats-on/the-memory-plays/" target="_blank">online</a> or call 04 802 4175</div>
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<span style="font-size: large;">Blood From A Stone A Twisted Villains Anthology</span></h3>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQpx_tCblEmMLAXwWFgu4SeOgi2Jp8odRW70BVYqsc9EMSpBeKD3rGAjwyWdZwEEVKakEjsxcYIPdtZD8qoMU_moQup0ptHP7ZYQO012HeIWGUMYdVPpuPcEumJw5zSh_7_2TH0-VNfjJN/s1600/Cover.jpg" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="500" data-original-width="327" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQpx_tCblEmMLAXwWFgu4SeOgi2Jp8odRW70BVYqsc9EMSpBeKD3rGAjwyWdZwEEVKakEjsxcYIPdtZD8qoMU_moQup0ptHP7ZYQO012HeIWGUMYdVPpuPcEumJw5zSh_7_2TH0-VNfjJN/s320/Cover.jpg" width="208" /></a>Villains are never born—they’re made—and their stories are twisted by those that call themselves heroes until there is nothing left but darkness and lies.</div>
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This collection of eight twisted villain tales will leave you second-guessing everything you thought you knew about the evil characters we all love to hate.</div>
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Nothing is as it appears. Whose side will you take?</div>
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Launches 30th October.</div>
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Preorder in <a href="https://books2read.com/u/meAVMz?fbclid=IwAR3HWgPwG34r40-Dp-RIYJTCuC-zMg7nxkDLIzBSPsXJ8M1jz46-2M_DEro" target="_blank">ebook</a> or <a href="https://www.amazon.com/Blood-Stone-Twisted-Villains-Anthology/dp/1948668122/" target="_blank">paperback</a> today.</div>
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Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-55503008724739669642018-08-03T11:03:00.001+12:002018-08-03T11:03:43.358+12:00Please Don't Touch My Dog (or Me)<span style="font-family: Arial, Helvetica, sans-serif;">It's been a little while since I posted. At the beginning of July an assistance dog, Bindi, came to live with me.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmkzVu4n_K1hhl1CIN0o3dGcOluAOJzYqI0lWiqZhLezrw0Tqx_Es2oQ98iRxlkN3-DtXW3PP4hKGOOrG5ZCCd0iO7xTqayh463f2BU9zLWA5KXtJo2eOeBLkaTlQpCWJPsJoPmrJG9WO8/s1600/WP_20180710_001.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img alt="Golden Labrador dog, lying down, looking over her shoulder at the camera " border="0" data-original-height="717" data-original-width="1277" height="177" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmkzVu4n_K1hhl1CIN0o3dGcOluAOJzYqI0lWiqZhLezrw0Tqx_Es2oQ98iRxlkN3-DtXW3PP4hKGOOrG5ZCCd0iO7xTqayh463f2BU9zLWA5KXtJo2eOeBLkaTlQpCWJPsJoPmrJG9WO8/s320/WP_20180710_001.jpg" title="" width="320" /></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbd_B2Z3U1Ron18LF0nBcWHTAE2jFOx16SLcp9TQ-n0OS4JqFOesEqBOZoylTEDh3H8PvUUY0XOHTC8_bk8liDdMHHsrbADbQBTkn1O0G2iSlRurdIqu9MhtujIpB_Lu-GiBS1RTfeHwRj/s1600/WP_20180714_002.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img alt="Assistance dog Bindi, sitting on the floor of a bus, looking out the window" border="0" data-original-height="717" data-original-width="1277" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbd_B2Z3U1Ron18LF0nBcWHTAE2jFOx16SLcp9TQ-n0OS4JqFOesEqBOZoylTEDh3H8PvUUY0XOHTC8_bk8liDdMHHsrbADbQBTkn1O0G2iSlRurdIqu9MhtujIpB_Lu-GiBS1RTfeHwRj/s320/WP_20180714_002.jpg" title="" width="320" /></span></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;">If you've been following this blog for a while, you'll know my <a href="http://littlemissautoimmune.blogspot.com/2017/09/acceptance-sleep-disorders-and-dogs.html" target="_blank">first match with an assistance dog</a> didn't go all that smoothly, so I was a little nervous leading up to meeting Bindi. Fortunately things have gone really well, and we've bonded quickly. Bindi has been picking up my stick and other items for me, stablising me when my legs get shaky, and helping me get up off the floor when I have accidental lie downs. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It's been a bit of an adjustment, as I've never before consistently gotten up as early as Bindi wakes me, but I think that routine has been really good for me. I'm outside more, as I take her to the park three or four times a day, and I'm getting way more exercise and social interaction with people I meet there.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Of course, my original reason for applying for an assistance dog was to help with my sleep disorder stuff. That stuff is a little harder to train her for, but we've been working on a couple of things. To start with she mostly just ignored me when I did strange things in my sleep, but for the last week I've been getting her to follow me when I get up to go to the bathroom in the night, so hopefully she will also follow me if I sleep walk too. This won't necessarily wake me up immediately, but if I'm aware of her being there, nudging my leg, I think I'm more likely to wake up and orientate myself quicker, and less likely to do stupid things and injure myself. I've also been training her to turn on a tap lamp, and plan to give her the command when I wake up after shouting/screaming in my sleep. Hopefully she will learn to associate the two, and turn it on herself to wake me up. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This was on our first day of teaching her to turn on the light, and she was already doing so well.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Overall, I've really been enjoying having Bindi with me. She's so well trained and behaved, thanks to the amazing team at Assistance Dogs New Zealand and so far the response to me having her in public has been really positive. People have mostly been good about not touching her when she has her working jacket on, though I have had a few problems with people crouching down and talking to her instead, which still distracts her - not so great if I'm leaning against her and she runs over to them!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The thing that I've have found slightly strange is answering questions about why I have her. I didn't expect this to be an issue for me, as I've had years of answering questions about why I walk with a stick. Somehow this is different though. When people ask me about my stick, I can just say I have lupus. They may or may not know what that means, but they generally aren't too pushy about asking for more information. With Bindi, people tend to want more specific answers - what exactly is wrong with me? What is she trained for? How does she help? What type of dog is she? I have to admit, I tend to answer "Labrador" to that last one, even though I know that's not what they're asking.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I do understand the curiosity, but I've found the questions difficult to answer on the spot. This could partly be because I'm really tired at the moment, as I'm still adjusting to the new routine, but I also find a bit of the "I'm a fraud" feeling slipping in. When I list the things she does for me, I start wondering if that's enough to justify me having her. They do make a difference to me - her picking up my dropped stick if I'm shaking can mean the difference between me getting home safely straight away, and me falling and spending an hour on the pavement waiting for my legs to start working again. But when I say it like that "She picks up my stick for me" it doesn't sound like much, especially as I'm not always walking with a stick when the question is asked. I've heard that's a feeling a lot of people with assistance dogs go through though, especially as medical conditions are often changeable so there will be times we are well, and don't rely on the dogs so much, and times we are unwell and really really need their help.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I guess it's more of the invisible illness stuff. People often assume I am training Bindi, because I don't look "disabled". I've also had a lot of people assume I'm blind, especially if I'm wearing sunglasses, as that's the first association people make with service dogs. I'm not really bothered by the assumption, but it has led to some interesting situations as people start trying to guide me places - not always where I'm wanting to go, and sometimes by grabbing me quite roughly. This is well intentioned, but I'm fairly certain that no one likes being man-handled by strangers regardless of their level of vision. Unless the person is in immediate danger, I think speaking to them first or a gentle touch on the arm is really all that's appropriate or necessary! I've mostly just been calmly explaining that Bindi is an assistance dog, not a guide dog, in these situations but I did get a little short with the woman who grabbed me and pulled me into the side of the seat on the bus, leaving a bruise on my leg - definitely wouldn't have been helpful if I were blind either!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">All in all, there has been a lot of learning over the past few weeks - for Bindi, me and for the general public at times. I think that learning will continue for a while yet, as all of us keep figuring it out along the way.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Thanks for reading,</span><br />
<span style="color: purple; font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Little Miss Autoimmune.</i></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>If you'd like to support the work Assistance Dogs New Zealand do, please consider donating through my <a href="https://givealittle.co.nz/fundraiser/helenandpaddy?_ga=2.104471808.1813064246.1499147322-758727251.1499147322" target="_blank">givealittle page</a>. Any amount - large or small - is incredibly gratefully received.</b></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-11096084496368383622018-07-03T11:08:00.001+12:002018-07-04T20:54:26.309+12:00I am a mosaic not a cookie jar<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicW2245vOxaZ4nNRuywtKn0XzaHKhXvzt6Lpmkgm65NH99vB6Q9KcxewM3c5VD7aATnHzqA8vNGPUl_vbn2kxsS5YBbWDdn9bK2XX1-mLUPM0I3QDrJCkfPCkNUpsARYwfSTw2xuBsAmDz/s1600/Face+Collage.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Picture of a face. A collage made up of small bright coloured pieces of paper." border="0" data-original-height="593" data-original-width="625" height="303" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicW2245vOxaZ4nNRuywtKn0XzaHKhXvzt6Lpmkgm65NH99vB6Q9KcxewM3c5VD7aATnHzqA8vNGPUl_vbn2kxsS5YBbWDdn9bK2XX1-mLUPM0I3QDrJCkfPCkNUpsARYwfSTw2xuBsAmDz/s320/Face+Collage.JPG" title="" width="320" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">I was thinking today about how it feels when someone sees you as something that needs to be “fixed” when you’re a chronically ill person. I’ve tried to explain this before – usually falling back on saying “I don’t need to be fixed because I’m not broken” but I’ve come to realise that explanation isn’t going to work. Because they don’t believe you. In their eyes you are broken, and no amount of telling them you’re not is going to change that.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So I started thinking about it differently. What if I am broken, but that’s not really the point?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Imagine you own a cookie jar. It’s a beautiful cookie jar, a functional one too – so big and holds those cookies so well! And it can store other stuff as well – a multi-functional jar. Maybe sometimes you make punch in it, and serve it up at dinner parties, and everyone tells you how beautiful and wonderful it is.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Then one day the cookie jar breaks. Smashes. Like irreparable - broken into a million tiny pieces, some of it is now ground into sand, smashed. You devote days – weeks – to trying to put it back together. You spend hours on the internet, and talking to repair specialists, but all of them say the same thing: “I’m sorry, but this is too broken to repair.” But you don’t believe them. You go it alone, trying glue after glue. You even try some alternative repair techniques – you origami the crap out of that jar, trying to make it hold together. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But none of it works.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">You cry. You get angry. You spend days on the floor just lying in amongst the pieces.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then one day you accept it. Your jar is broken, and it isn’t coming back. So you pick up the pieces, and you start to make a mosaic.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There are still days when you miss the jar, but as you work, you start to realise you are making something amazing. Some days you even look at the art you are creating, and you think it is more beautiful than the cookie jar was originally. You start to love it and become proud of it.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Then someone comes to visit. They look at the mosaic. Their face falls. <i>You broke your jar,</i> they say.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Suddenly the mosaic you worked so hard on doesn’t seem quite so beautiful anymore. Suddenly you feel embarrassed of this thing you have been building. It seems unimportant and useless, not like the cookie jar which could hold all the things.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>I know someone who’s jar got dirty,</i> they say. <i>They cleaned it and it was good as new.</i></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>You should go to a repair specialist,</i> they say</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>You are just not trying hard enough. You could fix it if you wanted to. Think positive!</i></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>I can fix it! It just a tiny crack.</i></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And you start to wonder if you were exaggerating. Maybe there was only one crack, and you could fix it! So you pull apart the mosaic you have spent so long building, and you are hopeful that this time you will fix it – you will have your cookie jar back! And you try, and try again to fix it. You go to the woman who washed her dirty jar, and she washes the pieces, but that doesn’t put them back together. You go to another repair specialist, but they tell you there is no hope. So you try harder, and you think positive, and you pray and hope, and try again and again… but still it is broken. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">You have to give up again.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">You have to grieve again.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">You have to start the process of acceptance and making something good out of the pieces right back from the beginning.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This is what it feels like when someone wants to help fix or cure chronic illnesses. It feels like they don’t see all the good you bring into the world – all the beauty you have created around the hard parts… And maybe that is not how they feel. Maybe they do think the mosaic is beautiful, they are just convinced the cookie jar is better and are sad for you that you don't have it anymore. But that is not for them to decide, and it’s pointless and kind of hurtful to keep bringing it up when the cookie jar is gone.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I know that people are trying to help when they suggest fixes for my illnesses, and I do appreciate that they are wanting to make things easier for me. But there is a big difference between “This will fix you” and “I wonder if this might help?” and also a big difference between suggesting something and insisting that someone must try it. I don’t mind when people make suggestions – some of them I am really thankful for – but I do need people to do it in a way that respects the life I have now.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I am done searching for that cookie jar. I love the mosaic my life has become, and I’m not looking to go back. But if you can suggest a gloss that will make my pieces a bit shinier… then by all means tell me about it. I'm all for shiny pieces.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading,</span><br />
<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><i>Little Miss Autoimmune</i></span><br />
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Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-39214686326188433022018-06-18T14:02:00.001+12:002018-06-19T01:30:07.139+12:00Plastic Straws Are A Strange Hill to Die On<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbvOu81fsACBxzhGoZKcZQnYBtHzDYFY5tXNIpJs38hoColGt49PH0EaKi8ktur6Ngs6wXOrmtTDnTMCl_a_5Ditt3NP688urb04qdIVGMkwAeeKAFu_WJ_BIUCO2qmMzTfctUhjQNfnPT/s1600/WP_20180619_001.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1277" data-original-width="717" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbvOu81fsACBxzhGoZKcZQnYBtHzDYFY5tXNIpJs38hoColGt49PH0EaKi8ktur6Ngs6wXOrmtTDnTMCl_a_5Ditt3NP688urb04qdIVGMkwAeeKAFu_WJ_BIUCO2qmMzTfctUhjQNfnPT/s320/WP_20180619_001.jpg" width="179" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">The other night I found myself watching a video about a bar
which has started using straws made out of pasta as a biodegradable alternative
to plastic straws. Now, obviously I’m a coeliac, so this isn’t something I
would personally ever want, and I could see a few other flaws with the idea. But
overall, I thought it was cool that the bar was thinking about the problem, and
approaching it with creativity and innovation.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then I read the comments.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Man, this has to have been one of the most bizarrely
passionate comments sections I have ever read. People were mad about food wastage,
people were mad that we don’t just drink straight out of the glass, people were
mad at hipsters… the anger just went on and on. But the comments that surprised
me were the many many able bodied and normal-eating people getting mad on
behalf of coeliac and disabled people.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So, the coeliac part of this is kind of obvious. If you order
a drink, you don’t expect for it to arrive with a lump of glutenous pasta in it,
and in all honesty if I drank out of a straw assuming it was a normal one, and
then later found out it was made of gluten, I would be pretty annoyed. But that
scenario is quite unlikely. While there obviously is a noble environmental
motivation behind this, the pasta straws are clearly also (at least in part) an
advertising gimmick for this bar. They’re not keeping the fact that their
straws are made of pasta a secret – they’re proclaiming it loudly for all to
hear. It may become an issue down the track, when the novelty wears off, but
any problems would be mitigated by a simple note on the menu saying that the
straws contain gluten and to let staff know if you have an allergy.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The disability part of this is a bit more complicated. For
some people with disabilities, differences in strength, function or movement
can mean that straws are an essential part of daily living. People facing these
issues may not be able drink safely or independently without them. In this
case, straws usually do need to be plastic, as the size and malleability are
important, and therefore metal or pasta straws aren’t always a suitable
replacement. Straws are also often used in rest homes and hospitals for similar
reasons, and again alternatives other than plastic probably wouldn’t be
appropriate.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When I saw comments along these lines, and realised the
majority of them were coming from able-bodied people, at first I felt
pleasantly surprised. It was nice to see able-bodied people thinking outside of
their own experience and considering what impact a simple change might have on
people with disabilities. But as I read on, and the anger and vitriol in the
comments rose, I started to feel a bit odd about it.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">While it is nice to see able-bodied people going out of their
way to advocate for people with coeliac and/or disabilities, I feel like this
is kind of a weird one for people to be getting so passionate about. The gluten
stuff is a potential danger, but it wouldn’t be that hard to remedy with clear labelling
and a few simple kitchen protocols to avoid cross-contamination. With the
disability stuff, the times I’ve eaten in a café or restaurant with someone who
needed a straw to be able to drink, that straw came from the person’s bag not
from the restaurant itself. This isn’t my experience, so I can’t say this for sure,
but my guess would be that it’s pretty common for people who need straws to carry
their own, as they couldn’t be sure of always being able to get one from a
bar/restaurant. While people needing access to plastic straws is an issue, I’m
just not sure bars not supplying them is as big of an issue as some were making
out.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The thing that bothered me the most about this though, is I
don’t often see this level of passion from able-bodied people over other disability
or illness issues. There have been so many times when I or someone else has
pointed out that something is not accessible, and the response has been “Oh…
that’s a shame,” and a swift change of subject. Worse, online the response is
often defensive, angry or filled with nasty personal attacks, instead of doing
anything to try to understand or mitigate the problem. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Where is the passion and support for those things, which (in
my opinion) cause a much bigger barrier to disabled people participating in
life? I know, we all have our own lives, our own causes and we simply can’t get
involved in fighting for everything. But I do have to ask myself why, when
people are finally getting passionately involved, is it over plastic straws?<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Now I don’t want the take away from this to be “stop caring
about plastic straws.” This is a real issue – both from an environmental
perspective, and from the point of view of making sure people who need straw still
have access to them. But if you care about plastic straws for people with disabilities,
maybe just try to use some of that passion towards other disabilities issues
too.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading,</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: purple; font-size: x-large;"><i>Little Miss Autoimmune</i></span><o:p></o:p></span></div>
<br />Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-76784330927628142852018-04-15T15:00:00.000+12:002018-04-15T15:00:48.010+12:00A Little Bit of Lupus - Guest Post by Author Megan O'Russell<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqJMG2tdLe1n8JPVZpOuXksHHg1vLrQTyXUDgU1BwGv-KBFA10zzsnqZagXvU5rOr5uh3eS6ERf4iJR8HYNFxnYqmre6vUNfJ8BKHDZuCRl7qQebuxXOQ1oP6ZrjwKNrKoRpQ7UEM6c38Y/s1600/61yVoyozldL._UX250_.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="167" data-original-width="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqJMG2tdLe1n8JPVZpOuXksHHg1vLrQTyXUDgU1BwGv-KBFA10zzsnqZagXvU5rOr5uh3eS6ERf4iJR8HYNFxnYqmre6vUNfJ8BKHDZuCRl7qQebuxXOQ1oP6ZrjwKNrKoRpQ7UEM6c38Y/s1600/61yVoyozldL._UX250_.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Author Megan O'Russell</td></tr>
</tbody></table>
<i>Along with being a blogger, I'm also a </i><a href="https://www.amazon.com/Underwater-Helen-Vivienne-Fletcher-ebook/dp/B07BMV3JHR/" style="font-style: italic;" target="_blank">young adult author</a><i>. One of the cool things about this is that I get to connect with other authors from around the world. Like any career, writing can be tricky when you're living with chronic illness, but it is more forgiving than many other jobs, and it certainly provides other benefits and ways to cope with the harder parts of illness. Someone who understands this is my fellow author Megan O'Russell. Like me, Megan is living with lupus and writing </i><a href="https://www.amazon.com/Megan-ORussell/e/B00OO6DXAU/" style="font-style: italic;" target="_blank">young adult novels</a><i> (her writing is brilliant by the way - highly recommend </i><a href="https://www.amazon.com/Magically-Messed-Friggin-Bryant-Adams-ebook/dp/B074T9Q5DK/" target="_blank">How I Magically Messed Up My Life in Four Friggin' Days</a><i>.) Unlike me, she's also juggling a career as a musical theatre performer and living in a tour bus!</i><br />
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<i>Megan's been kind enough today to take time out of her busy schedule, promoting her new book</i> <a href="https://www.amazon.com/dp/B07BTN6B1X/" target="_blank">Boy of Blood</a> <i>to tell us a bit about her fascinating life and about her lupus story. </i><br />
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<h2>
A Little Bit of Lupus by Megan O'Russell</h2>
I was diagnosed with Lupus after one freak day when I was twenty-three. It had been snowing during the night, and I was too nervous to pull off the highway to get gas on the way to work.<br />
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Fast forward to the end of the day. I was stuck in a parking lot with a dead car battery, no gas, and really terrible frostbite, even though the temperature had jumped up to 50 Fahrenheit (10 Celsius).<br />
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My husband insisted that I go to the doctor and have my gray fingers looked at. Luckily for me, the doctor at the urgent care took the time to ask how I had gotten frostbite and was diligent enough to realize something wasn’t right. About a week later, I was seeing my first Rheumatologist with a diagnosis of S.L.E.<br />
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That was… we’ll just say a while ago.<br />
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And here’s the thing. For someone who’s been living with autoimmune for a while, I’m really pretty healthy. I make my living singing and dancing on stage as a musical theatre performer. I’m also an author with three different series at two different publishers.<br />
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Right now, I’m on a national tour of a show where I spend much of my allotted sleep time curled up on the floor of a bus. Sleeping under my bus seat isn’t as bad as it sounds, but still, not something that you picture someone with a chronic illness pulling off.<br />
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Whenever I tell someone I have Lupus, either in casual conversation, or because I need them to know, I feel like an imposter. If I can dance on stage, I’m not really sick right? If you can hike a mountain, do I actually need to go see a doctor?<br />
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It comes from all sides. I had a lab tech laugh at me because he didn’t know why he needed to do a chest scan on someone who’s still sweaty from doing a 5K (I’d say running, but my lungs were in bad shape and I’m not great at self cooling, so it was like a 2.5k run/2.5k shamble along).<br />
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My husband almost stopped talking to some of our friends because they could not understand why I could possibly need to sleep between shows. They thought I was just being lazy and territorial in my wanting to nap in my room. Nope. I have to sleep to stay off steroids.<br />
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Trying to explain to each new team I work with on a show that, yes, I have Lupus. No, you won’t ever notice on stage. The spilt between treating me like a hypochondriac and an egg shell are about 50/30 (20% are really awesome).<br />
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I was at the doctor not too long ago because I wasn’t breathing very well. Her response: “How are you dancing if you can’t breathe?” I see lots of spots and try not to fall over, that’s how.<br />
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The other actors do crazy workouts before the show. I have to save my energy for the stage.<br />
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Some of the people we travel with only manage to sneak in a few hours of sleep a night. I’m not trying to compete with how little sleep they’re able to get when I say I’m just plain old exhausted. Not from lack of sleep, just from existing with an auto-immune disease.<br />
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And… I still feel like an imposter because I’m not that sick. Even at my worst, I’m still surviving.<br />
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Maybe that’s why I’ve turned so whole-heartedly to writing. A profession where it doesn’t matter if your lungs are acting funky, and no one cares if I look a little dead behind the eyes.<br />
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In acting, the first thing I do in my workday is go into a dressing room and strip down with my coworkers. There’s nowhere to hide the dent in my legs from the steroid injections.<br />
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My characters don’t care about the thigh dents. My literary agent doesn’t care if my cheeks are puffy from steroids.<br />
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I am completely safe and competent while writing. I can create a world where monsters reign and magic is a constant battle while icing my knees. The magic of first love can be created while my whole torso (at least it feels like my whole torso) is covered in Vicks.<br />
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Acting and writing are both forms of storytelling, but when living with auto-immune, they are the exact opposites.<br />
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My word count doesn’t give me a five minute warning that I’m about to start a two hour creative sprint that will stop for nothing short of the theatre catching fire.<br />
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If my brain can’t sort through how to finish a scene, I click save and shut the computer. And you know what? My characters can’t complain. Why? Because I shut the computer, so ha!<br />
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In writing, I’m in charge. I get to say how much or how little I’ll do on any given day. I have the power to take a step back for a moment, and no one will take the story from me because it’s mine.<br />
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I’m not an imposter. I’m an author. And the author writes the rules… literally.<br />
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And there’s something in spending more time as an author, in finding a venue outside the stage lights where I’m useful and competent, that’s made it much simpler for me to say no in other aspects of life as well.<br />
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No, you’re wrong. Just because I don’t look sick doesn’t mean I’m fine and just need a cup of coffee.<br />
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No, I don’t have to go to the gym everyday before the show just to keep up appearances. I’d rather not have fire shooting through all my joints, thank you very much.<br />
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Page or stage, I am living and thriving with Lupus. And it doesn’t really matter who can’t believe I’m ill.<br />
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I am more than just my messed up little body. I am a useful, competent, worthy human, and I am not an imposter. Lupus is one small part of my enormous and overwhelming life. My story is my own.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_9bQtStTT2w4C1aXaysXKktGAb53yjcGTHpPsG6w3IEkzeOYIh7w1n3iAQaKMgbSWLE2fWzmmWkzbS3kVtzbxbz0w1fQEuZuMju0ZgZl3hnoB6fhv1hqZjfZ5srWNoDds5H3NFhw1a7Yz/s1600/51x2XdsKMoL._UY250_.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Book Cover of Boy of Blood by Megan O'Russell" border="0" data-original-height="250" data-original-width="164" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_9bQtStTT2w4C1aXaysXKktGAb53yjcGTHpPsG6w3IEkzeOYIh7w1n3iAQaKMgbSWLE2fWzmmWkzbS3kVtzbxbz0w1fQEuZuMju0ZgZl3hnoB6fhv1hqZjfZ5srWNoDds5H3NFhw1a7Yz/s1600/51x2XdsKMoL._UY250_.jpg" title="" /></a><i>Megan is a native of Upstate New York who spends her time traveling the country as a professional actor. Megan's current published works include the </i><a href="https://www.amazon.com/Girl-Glass-Megan-ORussell-ebook/dp/B01N76WTV7/" target="_blank">Girl of Glass</a><i> series, </i><a href="https://www.amazon.com/Magically-Messed-Friggin-Bryant-Adams-ebook/dp/B074T9Q5DK/" target="_blank">How I Magically Messed Up My Life in Four Freakin' Days</a> (The Tale of Bryant Adams, Book One)<i>, and </i><a href="https://www.amazon.com/Without-Magic-Chronicles-Maggie-Trent-ebook/dp/B078WY9W7K/" target="_blank">The Girl Without Magic</a> (The Chronicles of Maggie Trent, Book One)<i>.</i><br />
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<i>When not on stage or working on her books, Megan can be found blogging on <a href="http://lifebeyondexaggeration.com/">LifeBeyondExaggeration.com</a></i><br />
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<i>For more information on Megan's books and for Megan’s author blog, visit <a href="http://meganorussell.com/">MeganORussell.com</a>.</i><br />
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Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-41914669240315615742018-01-18T11:55:00.001+13:002018-01-18T19:54:22.560+13:00Anxiety? Or crappy situation.<span style="font-family: "arial" , "helvetica" , sans-serif;">I’ve been having the same conversation with several wonderful people in my life lately. And, if I’m honest, I’ve been having the same conversation with myself too. It can basically be summed up like this: </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Just because you have anxiety, it doesn’t mean things aren’t actually scary.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Just because you have anxiety, it doesn’t mean life isn’t really hard sometimes.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Just because you have anxiety, it doesn’t mean people aren’t behaving in an absolutely sh*tty way towards you.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When you live with anxiety, you get used to pushing down your feelings. Your mind and body spend a lot of time making you feel like you are in serious danger, but logically you know you’re not, so you have to push those feelings away in order to be able to function. Anxiety also spends a lot of time making tasks feel ten times harder than they should, magnifying criticisms, and twisting words and situations until you feel worthless and like everyone hates you. So we spend a lot of time not trusting our own perceptions – repeatedly telling ourselves that we are not trustworthy.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The thing is though, sometimes we are right.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">At the end of last year, I was lucky enough to be able to travel overseas to England and Germany. Considering I live literally on the other side of the world, I knew that some of this was going to be a real challenge for my health – both physical and mental. Even more so because in the weeks before I left, I had been under some extreme stress and as a result had a really serious sleep <a href="http://littlemissautoimmune.blogspot.co.nz/2017/11/when-you-really-have-tried-everything.html" target="_blank">walking incident</a> injuring my head and neck.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Fortunately, my physical health held up surprisingly well while I was overseas. There were a couple of points where I really, really needed the wheelchair assistance at the airports, as I couldn’t hold my own weight after sitting for 12 hour flights, and one day in London where I had pretty bad vertigo and nausea. But otherwise I kept it together physically, and my anxiety was staying in check too. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Until I got to Germany.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My arrival in Germany was not at all straight forward. My aunt was kind enough to drive me the two hours from where I’d been visiting her in Bristol, back up to London, then I needed to catch two flights and two trains to reach the city where my friend lives. I was nervous about the journey, given that I have the direction sense of a carrot and quite often get lost in my own city, let alone halfway across the world where my grasp on the language is pretty limited. But I psyched myself up, researched and wrote down the train times, and started the journey.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw2uYYTXEK2Y55tH6kSZtaFcJS3qCY9MVWewjr-E59Kf48swoRSOl7C2WbP1whytRYZdXKEgddrmjjn9ScPru0-YUtTqKiRj_W-qqCHLpCccWejlDVA3o0ESrRqOqcMn4JUFd0YWIQSIZl/s1600/WP_20171203_001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Wing of a plane over clouds, taken from an airplane window " border="0" data-original-height="717" data-original-width="1277" height="223" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw2uYYTXEK2Y55tH6kSZtaFcJS3qCY9MVWewjr-E59Kf48swoRSOl7C2WbP1whytRYZdXKEgddrmjjn9ScPru0-YUtTqKiRj_W-qqCHLpCccWejlDVA3o0ESrRqOqcMn4JUFd0YWIQSIZl/s400/WP_20171203_001.jpg" title="" width="400" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then the flight was delayed.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then the second plane was late.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then by the time I arrived, the train I was supposed to catch was no longer running, and the only other option was a much longer journey.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then I realised that there were only two people around, neither of whom spoke any English, and I was completely blanking on any German other than “Entschuldigung, sprechen Sie English?” (Excuse me, do you speak English?) and “Kannen Sie mir hilfen bitte?” (can you help me please?) which does not help when the answer is invariably “nein” and you do not have the language skills to understand the help they are trying to give you anyway.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then, after managing to communicate that I needed to get a train to Jena (ein Zug nach Jena), the information I was given did not match up with the information displayed on the train platform.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And the ticket machine did not have an English option that I could find, and it timed out three times as I tried to figure out how to make it work. Nor would it accept my money or my card, and the fines for getting on the train without a ticket are high.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And when I got hold of my friend to ask for help, she couldn’t translate the information either.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then my phone died.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then there was no one around, let alone anyone I spoke the same language as.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then I was completely alone on a train platform </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">in Germany,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">in the middle of the night, </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">in the snow, </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">with no idea whether I was even in the right place.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So naturally, at this point I was panicking. By now it was after midnight, I was jetlagged, I’d been traveling for about 14 hours, and I was fricken exhausted. My legs were spasming, threatening to give out, but I knew if I fell I probably wouldn’t be able to get up again. Given the snow, being stuck on the ground overnight would likely mean hypothermia… and possibly losing some toes.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">To cut a long story short, I saw there was only one train left on the board, so finally managed to persuade the ticket machine to take my money and got on it. At the next stop, I discovered the information I’d been given about the second train was completely wrong, but I did at least find some people who spoke English. They didn’t know where I needed to go, but they could at least point me in a likely direction. I then spent far too long standing in an elevator which said “doors are opening… doors are closing… doors are opening… doors are closing…” repeatedly but wouldn’t go anywhere or let me get out, before finally dragging myself and my suitcase up a couple of staircases while a group of men laughed at me from the top. I found the right train, got on it, and my friend met me at the other end.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Okay, so aside from the fact that a lot of this is now funny in its ridiculousness with some distance, why I am telling you all this, and what does it have to do with anxiety? </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I look at this story now, and I am incredibly proud of myself for keeping it together and figuring out what to do to get myself safely across Germany. At the time though, I was furious at myself for panicking. I was convinced I was making a big deal out of nothing, and that anyone else – anyone who didn’t have health problems or anxiety – would have been absolutely fine. Heck, I was even blaming myself for the whole situation – surely I was somehow to blame for the planes arriving late, the ticket machine being faulty and for the train timetables at the airport being out of date. It was clearly All. My. Fault.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Except it wasn’t.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">None of this was in my control, and in fact, I handled it a lot better than most people would have. Right from the first delayed flight, I was coming up with back up plans for what I would do if I couldn’t catch the flights and trains I’d planned to, and when those back up plans got thwarted, I kept coming up with new solutions until I found something that worked.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It really wasn’t until I told the story to other people, and they responded with a horrified look, or said they would have sat down and cried if it had been them, that I realised this was actually a really stressful situation, not just an overreaction from me. This is pretty much the conversation I keep having with my friends. I find myself saying to them:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Yes, you have anxiety, but no, you are not overreacting, your partner/boss/flatmate/family member/friend is actually being unreasonable. </span><span style="font-family: arial, helvetica, sans-serif;">No, you are not weak and useless, life has just thrown you so many curve balls you’ve forgotten what straight looks like, and actually you are stronger than everyone else to have dealt with all of them. </span><span style="font-family: arial, helvetica, sans-serif;">No, you are not stupid, your work/study/technological item is just really, really hard to get your head around sometimes.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">You see the thing people sometimes forget is that it’s entirely possible to both have anxiety and be upset because of a genuinely yuck situation – the two do not negate each other. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Each friend who has come to me, I’ve reminded them of this, and they’ve done the same for me when I’ve started to doubt. Of course, there are going to be times where it is my anxiety or an overreaction, but I honestly think deep down I do know the difference, I’ve just stopped listening to myself. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I don’t know what the solution is here. Finding the balance between pushing anxiety away, and listing to the real and valid fears is hard, and it’s something I (and my friends) will probably have to keep working on for a while. In the meantime, when my friends come to me with situations like this, I’ll remind them of one important thing:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">You are worth trusting</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And I’ll remind myself of the same thing.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading, </span><br />
<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Little Miss Autoimmune</i></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com3tag:blogger.com,1999:blog-1301503337975878137.post-6878368427978510702017-11-21T15:13:00.000+13:002017-11-21T15:14:45.469+13:00When you really have tried everything...<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Last week, I had one of the worst sleep-walking incidents of
my life. I’d had some distressing situations going on, and as often happens
during times of stress this led to my sleep disorder worsening. I sleep
ran/fell full-speed, head-first into my cupboard door. As you’ll see from the
photos below, this caused some damage to both my head and the door, and I also
injured my back and neck in the process. I spent the rest of the night in
hospital, lying perfectly still, while doctors assessed whether my neck was
broken. I get very anxious about my neck being touched, so having to let
strangers put their hands around my throat, and at times restrain me to stop my
head moving was probably one of the most stressful parts of all this for me. It
turned out to be a complicated task as my X-rays don't look normal for someone
my age due to the damage to my spine from my arthritis, and so making a
clear-cut ruling as to whether or not my neck was broken was difficult to say
the least.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My head has now healed up, bar some scarring, but in the
nights since, I've continued to have sleep disturbances, waking with
frightening dreams and repeatedly getting up to interact with them, often
re-injuring myself. I’ve now got a motion sensor night-light which wakes me up
if I get outside my bedroom, but the sleep disruptions are still exhausting,
and it turns out there are still several ways for me to sleep-injure myself
without leaving my room (sorry knees!)<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Most of the time, I don't think living with illness is a big
deal. This is one of the times where I'm reminded it kind of is. My neck has
been cleared, but this very easily could have gone the other way, given the
force with which I hit the door and the fact that my bones are already weakened
by my illnesses and medications. Even though I tried very hard to comply with
the medical staff's instructions to keep completely still, the stress and sleep
deprivation caused my muscles to start spasming and the nurses had to restrain
me to try and protect my spine. If my neck had been broken, this could have
caused serious damage. As much as I want to stay positive, find the funny side,
and calmly move on from this experience, I can't help but feel a little scared
when I think about that.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I’ve realised though, that right now, it is okay for me not
to be okay. Being scared is a normal reaction to an abnormal situation. In
fact, I think it would be far more worrying if I was completely fine right now,
as that would be a sure sign that something was very wrong! I’m handling this a
lot better than most people would, as I’ve had plenty of full-on health
situations, and have built up a fair bit of resilience. But I’m still not okay.
And that’s okay. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I’ve been getting a lot of questions lately from friends as
to why I’m not on sleep-medication, whether various alternative therapies would
help, or whether I should be in some way restrained at night. Of course, after
this, I have myself been questioning my decision not to seek further treatment
for my sleep disorder. While I have hurt myself before while sleep-walking,
this is the first time that I’ve faced the prospect of ending up with a
long-term injury caused by my sleep disorder. I even started feeling guilty
about my decision, and wondered if I brought this accident on myself by
choosing not to continue searching for answers.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But this guilt comes from an illogical place. My doctor
fully agrees with my decision not to continue looking for treatment, and she
confirmed that there are no more medical options left anyway. When it comes to
non-medical therapies, I have fought the sleep disorder with everything I have.
To clarify things for myself, I wrote down a list of everything I have tried to
help improve my sleep disorder. It was four and a half pages long, and I’m sure
I was forgetting some things. I’m not going to include the full list here, but
here are a few examples:<o:p></o:p></span></div>
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<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Sleeping tablets</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Different sleeping tablets</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Medication specifically designed for sleep
walking</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Sleep restriction therapy</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Treating thyroid, iron, vitamin D and vitamin
B12 deficiencies</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">melatonin</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Meditation/mindfulness (various types)</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Relaxation (various types)</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Cognitive behavioural therapy</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Homeopathic sleep drops</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Lavender sleep balm</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Weird alternative therapy I can’t remember the
name of which involved holding metal rods and balls</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Treatment for heavy metal poisoning (including
removal of fillings)</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Keeping a strict bedtime and wake up time</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Only going to be when tired and not setting an
alarm</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Warm milk</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Counting out of sequence</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Sleeping naked</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Sleeping under a weighted blanket</span></li>
<li>·<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 7pt; font-stretch: normal; line-height: normal; text-indent: -18pt;">
</span><span style="font-family: "arial" , "helvetica" , sans-serif; text-indent: -18pt;">Hypnosis (both in sessions with a therapist, and
self-hypnosis using a guided audio.)</span></li>
</ul>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Most of the things I’ve tried made no difference to my
sleep-problems, while others made it worse, or had dangerous side effects. The
only thing that made a significant difference, was <a href="http://littlemissautoimmune.blogspot.co.nz/2017/09/acceptance-sleep-disorders-and-dogs.html" target="_blank">having an assistance dogstay with me</a>, but it’s going to be while before I can have a dog permanently.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As you can see, the list ranges from medical interventions, to psychological interventions, to alternative therapies, to straight out
old-wives’ tales. Some of the things on the list even contradict each other, as
in cases where I’ve been given conflicting advice, I’ve tried to give each
option a shot. I can confidently say I have tried it all.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Even if I hadn’t tried everything, this disorder is still
something outside my control and I don’t need to feel guilty for it anymore
than someone with cancer should feel guilty for the effect the disease has on
their body.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I understand my family and friends’ worry, and I appreciate
their concern and care for me. Continuing to battle against the sleep disorder
in these ways isn’t going to help right now though. Earlier this year, I ended
up feeling very bad about myself for having anxiety, and spent a lot of time
and energy on wanting to get rid of it. All that did was cause it to escalate.
As soon as I came back to accepting my anxiety as just something that is a part
of my life, it drastically reduced to a much more manageable level. I feel like
the same applies here. I am going to sleep walk more at the moment, as stress
and sleep-deprivation make it worse. That sucks, and it’s unpleasant to keep
injuring myself, but getting upset about it and coming up with new (and bizarre)
ways to try and stop it is just going to cause more stress and make it worse.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">With any luck, it won’t be too long until I’m assigned an assistance
dog and in the meantime, I’m taking a deep breath and trying to accept the
sleep adventures.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading,<o:p></o:p></span></div>
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<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><i>Little Miss Autoimmune.</i></span><o:p></o:p></div>
Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-62515791032256825492017-09-04T15:29:00.000+12:002017-09-04T18:48:17.658+12:00Acceptance, Sleep Disorders and Dogs<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Last year, after things went so <a href="https://littlemissautoimmune.blogspot.co.nz/2016/06/she-chose-down.html" target="_blank">badly wrong with treatments for my sleep disorder</a>, I decided not to seek further treatment. In part, this was because there weren’t a vast number of further options left to try, but it was also about the effect the previous treatments had had on me. Some had made no difference, but the emotional roller coaster of hoping they would then being disappointed when they didn’t was detrimental to my wellbeing. More often than not though, treatments had instead increased my sleep problems, and left me in a worse state than when I started. I decided that accepting the sleep disorder as a part of my life was preferable.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />This was not a decision I made lightly. I had to spend a lot of time soul searching to figure out whether I was simply avoiding other treatments out of fear, or whether not seeking further treatment and accepting the disordered sleep was a valid option. In the end, I came to the conclusion that acceptance was the right path for me. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />This has been hard for some people to understand. I’ve had many people suggest a range of alternative therapies, or insist that I should go back to the sleep specialist or seek a second opinion. I’ll admit, my responses to these suggestions have not always been polite, and I do at times get defensive in these conversations. Accepting my sleep disorder doesn’t mean that I <i>want</i> to have it, or that I have given up. It just means that I no longer put any energy into resenting or trying to change the fact that I do have it. When it comes down to it, I don’t really believe the sleep disorder is going anywhere, no matter what I try. I can continue to put all my energy into fighting it, or I can choose to live the best life I can with it.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Accepting something negative as a part of your life is not always easy, and there are times, particularly if I’m having a run of bad nights, where it can be nearly impossible. But ultimately, I believe this is the best thing for me.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />There is of course still the problem of the more dangerous aspects of my sleep wandering. My sleep specialist advised that I would need to make my environment as safe as possible. My floors need to be kept clear, to reduce the risk of tripping, and I keep all internal doors open so that I don’t run into them when I’m trying to escape scary dreams. Unfortunately, there’s only so much I can do, and I do still at times injure myself or wake up to find myself in potentially dangerous situations.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />Just after things got really bad with my sleep stuff, a friend suggested getting an assistance dog to wake me if I started sleep wandering. I wasn’t 100% sure how or if it would work, but it seemed like something that could potentially help, so I applied. The waiting list for dogs was several years long though, so I didn’t expect anything to come of it for a while.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />Earlier this year, I was contacted by Assistance Dogs New Zealand, saying that even though I was still quite far down the waiting list, they had a dog who they thought may fit my situation well. They began the process of training him for me.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />To cut a long story short, this particularly dog did not work out for me. He had very high energy, and was quite strong, which was difficult for me to manage as I’m unsteady on my feet and don’t have great hand strength, so couldn’t grip his lead very well. This is of course one of the difficult things about having multiple conditions, as sometimes the things that help one make another worse. The fact that my conditions are so changeable also didn’t help, as I was having a particularly good day when I was first interviewed by Assistance Dogs New Zealand, and so they matched me to a dog based on that. But I would also need to be able to care for the dog at my worst, and after seeing me on a bad day, Assistance Dogs NZ decided that this was not the right placement for this particular dog, and I had to agree.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />The good thing was that I had a trial with another dog, before he went to his permanent placement. He was a lot calmer, and found this very helpful for my sleep problems. While it didn’t stop me having sleep disturbances, I found that I didn’t react as strongly to them. While I was still very scared of the things I was seeing, I could tell from the fact that the dog wasn’t reacting to them, that they must just be dreams. This meant I felt less of an impulse to get up and run away, which reduced the risk of me hurting myself. Funnily enough, this has never worked with having a person in the house, as I tend to just incorporate them into my dreams, or even blame them for the strange things I’m seeing!</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />So, I am back on the list to be matched with another dog, though it will be a couple of years before that happens. In the meantime, I am <a href="https://givealittle.co.nz/fundraiser/helenandpaddy?_ga=2.104471808.1813064246.1499147322-758727251.1499147322" target="_blank">fundraising for Assistance Dogs New Zealand</a>, as raising $20,000 to go towards training future dogs is a requirement of receiving a dog.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />This has been an interesting time for me. Of course I got attached to both the dogs who came and stayed with me, and was very sad to see them go, but it was very useful to have this experience before I receive my own dog in a couple of years’ time. I still believe that not fighting against or resenting my sleep disorders – or any or my illnesses for that matter – is the best thing for me. I can live a great life with or without health problems. Having an assistance dog is just a way for me to manage my illnesses, and live my best life, sleep disorder or not.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />If you’re interested in Assistance Dogs New Zealand, and the work they do, you can find more information on the <a href="https://assistancedogstrust.org.nz/" target="_blank">Assistance Dogs New Zealand website</a>. If you would like to, you can also donate to my fundraiser for them on my <a href="https://givealittle.co.nz/fundraiser/helenandpaddy?_ga=2.104471808.1813064246.1499147322-758727251.1499147322" target="_blank">Givealittle</a> page. All donations, big or small, are very gratefully received 😊</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading<br /><span style="color: purple; font-size: large;"><i>Little Miss Autoimmune</i></span></span><br />
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Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-63424112397081376972017-07-18T21:17:00.001+12:002017-07-18T21:17:13.852+12:00Not All Spoons Are Created Equal<span style="font-family: Arial, Helvetica, sans-serif;">The last few months, I haven’t been doing so well mentally. My anxiety has been through the roof, and looking back at some of my thought patterns, I think I’ve also been struggling with depression. These are not exactly new things to me – I’ve lived with anxiety and depression since I was a teenager – but I’m usually more aware of what’s going on and can therefore manage it. This time it seemed to be escalating dramatically for no reason. But when I look at it properly, with a bit of perspective, this didn’t come out of nowhere. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I’ve been really busy this year, what with taking on multiple new students, studying, and publishing<a href="https://www.amazon.com/dp/B071KM6SF1" target="_blank"> my first novel</a>. The stress of having to so much to do, so much to learn, and having to keep multiple to-do lists at the front of my mind, started to get to me, and I felt like I was haemorrhaging spoons most of the time. My last post was about trying to get better at remembering to count spoons, and so I tried to cut out anything unnecessary, in order to save energy.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This should have worked. Reducing what I was doing should have left me with more spoons, and feeling more able to manage things. Instead I think it had the opposite effect. I felt more stressed, more anxious, and slipped deeper into negative feelings and fatigue. As this has gotten worse, my self-esteem has been plummeting. I found myself struggling to leave the house, having panic attacks at the thought of having to catch a bus, and reducing the number of people I talked to until I could count them on less than one hand. I also started to find holding conversations hard, as I’d done very little except sit at a computer screen doing admin all day, and felt like I had nothing interesting to talk about. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This isn’t me. Despite all of my illnesses and challenges, I am usually someone who lives widely. I’m someone who’s pretty comfortable going off by myself to events, talking to strangers, and have a pretty amazing group of wonderful friends. I enjoy trying new things, and have done many things which others find far too scary.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So what was happening here? Why was reducing what I was doing increasing, rather than alleviating, my anxiety? </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I’ve come to realise that not all spoons are created equal. Most of what I cut out was the fun, social stuff. I lean towards being a bit introverted, needing time to recharge after doing things involving other people, and so these do tend to take more spoons for me. This seemed like the obvious stuff to cut out, but I hadn’t taken into account what these things give me. Going out with friends, meeting new people, or going to events brings a lot of positivity and inspiration into my life, which offsets the tiredness that comes with it. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It probably also didn’t help that I was working and studying by myself from home, which meant I wasn’t even going outside for days at a time. I think if I had just been outside walking to work every day, or in an office with colleagues, it probably would have offset at least some of what I was feeling.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It hasn’t all been bad. Publishing my novel has been an incredible experience, and I’m very lucky to have had the work and study opportunities I’ve had this year. I also have some amazing people in my life, who have been there through this period. Looking back, I can see I have been disconnecting though. My emotional state had been making it hard to be present in any situation, as I get stuck in anxiety loops in my own head. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">When it comes down to it, this isn’t something other people can fix, but spending time with people rather than isolating myself is going to be a big part of getting myself back on track. It’s also important for me to be doing things other than work. For the moment, that’s taking the form of going to talks, shows and other interesting events. I remember writing a few years ago about another <a href="http://littlemissautoimmune.blogspot.co.nz/2015/09/stress-panic-and-fight-or-flight.html" target="_blank">period where I had been isolating myself after some stress</a>, and how much it helped going to events where you don’t really have to talk to people, just go and listen. I’m hoping this will also be the case again, and with time all forms of socialising will get easier too.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Looking back at my old blog posts, I feel like I’ve been getting myself into bad situations with my health and mental health again and again over the last few years. Last night I couldn’t help but think of the saying “A lesson will repeat itself until it is learned.” I felt a bit defeatist, knowing I keep putting myself into the same bad places, and seemingly not learning my lesson. But today as I’m writing this, and looking back at my old posts, I know that each time things have gotten out of control with my health or mental health, I have learned a little more. I have taken a little more responsibility for my own part in it, and I have got myself back on track a little quicker each time. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Perhaps my learning still isn’t done yet. It may be that I do need to encounter this lesson again, before I fully understand it, or perhaps I am done, and have finally learned what I need to. Either way, I can at least learn this part of it – to stop isolating myself and realise that fun and adventure are just as important to my wellbeing as rest and saving spoons – and I can keep making changes for the positive.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Thanks for reading,</span><br />
<span style="color: purple; font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Little Miss Autoimmune</i></span><br />
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Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-81976771656001139682017-05-07T14:58:00.002+12:002017-05-07T14:58:57.526+12:00Yes, You Still Have to Count Spoons.<span style="font-family: Arial,Helvetica,sans-serif;">I’ve been having a lot of trouble counting <a href="https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/" target="_blank">spoons</a> lately. Usually when I start to have problems with this it’s because I’m feeling really awful, and scraping together enough spoons to do even the simplest tasks is hard. This time, it’s kind of the opposite problem. I’ve been really well lately, and when I feel good, I tend to forget I still have restrictions on what I can do. <br /><br />Sometimes this isn’t such a bad thing. It’s okay to test the limits a bit – do a bit more, and if it turns out it’s too much, scale things back. But something in me seems to have lost the plot a bit at the moment, and I’ve been booking in things that would be hard even for a healthy person to do, as if I think I’ve become superwoman. I find myself thinking “It’ll be fine! I have way more spoons now!” No. No, actually I have <i>some</i> more spoons now. Not enough to do everything and certainly not enough to do 15 hour days (what was I thinking!) <br /><br />Fortunately every time I’ve overbooked myself recently I’ve realised it’s not going to work, and managed to reschedule things without letting anyone down, but it’s caused a fair bit of anxiety for me in the meantime. As with most anxiety, there were many factors involved, including that I was late on getting my B12 shot this month, but at the point where I had to simply walk out on something because I knew I was about to have a panic attack, I realised I had to get things better under control. So, I’m learning my lesson and getting better at carefully planning what I take on so I don’t keep putting myself in that position. It’s made me wonder, though, what’s brought on this sudden inability to spoon-count for me. Part of it is that’s there’s always an adjustment period to having more or less energy, as you figure out exactly what you can and can’t do now, but I feel like there’s more going on here.<br /><br />Well, the obvious thing is that there are lots of things I want and need to do at the moment. I’ve been given lots of awesome opportunities lately, and I’m loathe to turn them down, but that does of course have to be balanced against the commitments and responsibilites I already have. Sometimes making those decisions can be really hard. Saying “no” can mean letting someone else down, missing out on something you really want to do, or both. <br /><br />The other thing that’s been playing on my mind a lot lately is a feeling of being a “fraud”. When I’m feeling well, it seems less valid to say no to things because of my health. I’ve had times recently where I’ve said no to something then thought “Wait, could I have done that? Is it true that I’m not well enough? Am I actually even still sick?” After getting my blood test results back a few days ago, I can say yes, I am definitely still sick (nothing to worry about – just quite clearly showed a flare) but there’s a niggly part of my brain that makes me start to doubt myself.<br /><br />I know very well that if this was a friend rather than me, I’d be reminding them that invisible illnesses aren’t always consistent and just because you can do something one day doesn’t mean you can do it the next. None of that means it’s not real. I also need to remind myself that part of the reason I’ve been well lately is because I’d been doing a good job of taking care of myself. If I start taking on too much, and let the healthy eating slip (guilty) don’t exercise enough (also guilty) and forget to take my meds on time (yep, done that a few times too lately) I’m not going to stay well. I also need to remember that I’m not a fricken super hero. If it would be a lot for a healthy person to do, then there’s no reason for me, a non-healthy person, to feel guilty that I can’t. <br /><br />So, I’m going to do better at counting spoons, and try giving myself a break and stop accusing myself of being a fraud. I’m also going to forgive myself when I fail at times, take on too much, and have to spend a day curled up on the couch because I’m too tired to do anything else. Sometimes that too is just a part of this process and gettting mad at myself is quite frankly a waste of spoons. <br /><br />Thanks for reading,<br /><span style="font-size: large;"><span style="color: purple;"><i>Little Miss Autoimmune </i></span></span></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-24106081380883549632017-02-28T20:07:00.000+13:002017-02-28T20:07:18.368+13:00A PART OF ME HAS DIED!<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I wrote <a href="http://littlemissautoimmune.blogspot.co.nz/2017/02/i-dont-know-how-to-explain.html" target="_blank">the post below</a> a couple of weeks ago. At the time<span style="font-family: "arial" , "helvetica" , sans-serif;">, I<span style="font-family: "arial" , "helvetica" , sans-serif;">'d just d<span style="font-family: "arial" , "helvetica" , sans-serif;">eveloped</span> some unusual pain and changes to my skin, and had had some abnormal test results<span style="font-family: "arial" , "helvetica" , sans-serif;">, so</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">was starting down the journey that goes with that. From there, things moved pretty quickly. <span style="font-family: "arial" , "helvetica" , sans-serif;">An ultrasound show<span style="font-family: "arial" , "helvetica" , sans-serif;">ed what looked like a lipoma (a benign, fatty tumor) just <span style="font-family: "arial" , "helvetica" , sans-serif;">above my hip. </span>U<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">sually</span> the<span style="font-family: "arial" , "helvetica" , sans-serif;">se are harmless,</span></span> but there were some abnormalities so I was <span style="font-family: "arial" , "helvetica" , sans-serif;">referred</span> to a surgeon.<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span>Within days I had received an appointm<span style="font-family: "arial" , "helvetica" , sans-serif;">ent time for <span style="font-family: "arial" , "helvetica" , sans-serif;">the surgery.</span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">It all seemed super simple. It would be a<span style="font-family: "arial" , "helvetica" , sans-serif;">n easy</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">procedure</span>, <span style="font-family: "arial" , "helvetica" , sans-serif;">all over in 45 minutes, and I would only need local anesthetic, rather than general. <span style="font-family: "arial" , "helvetica" , sans-serif;">I kind of couldn't believe that for once I had something easily <span style="font-family: "arial" , "helvetica" , sans-serif;">diagnoseable, and even better easi<span style="font-family: "arial" , "helvetica" , sans-serif;">ly fixable. While the abnormalities seemed a bit worrying, the prospect of the pain going away was enough to calm my <span style="font-family: "arial" , "helvetica" , sans-serif;">concerns.</span></span></span> There was a part of me that was even looking forward to <span style="font-family: "arial" , "helvetica" , sans-serif;">getting it all over with</span>. </span> </span> </span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></span></span></span></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">But when has anything to do with m<span style="font-family: "arial" , "helvetica" , sans-serif;">y health ever been simple<span style="font-family: "arial" , "helvetica" , sans-serif;">? </span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I saw the surgeon today, and <span style="font-family: "arial" , "helvetica" , sans-serif;">w</span>hen <span style="font-family: "arial" , "helvetica" , sans-serif;">he</span> and the nurse saw the indentation on my skin, they both said vari<span style="font-family: "arial" , "helvetica" , sans-serif;">ations of "Oh... <span style="font-family: "arial" , "helvetica" , sans-serif;">that's not right<span style="font-family: "arial" , "helvetica" , sans-serif;">,</span>" </span>an<span style="font-family: "arial" , "helvetica" , sans-serif;">d</span></span> very quickly came to the conclusion that this <span style="font-family: "arial" , "helvetica" , sans-serif;">i</span>s not a lipoma. If it is a tumor, it<span style="font-family: "arial" , "helvetica" , sans-serif;"> would have to be a m<span style="font-family: "arial" , "helvetica" , sans-serif;">ore nefarious form, but the more like<span style="font-family: "arial" , "helvetica" , sans-serif;">ly diagnosis i<span style="font-family: "arial" , "helvetica" , sans-serif;">s that some of my tissue has died (fat necrosis.) </span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">There are a few possible causes for this<span style="font-family: "arial" , "helvetica" , sans-serif;">, all of which <span style="font-family: "arial" , "helvetica" , sans-serif;">are somewhat worrying.</span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Fat necrosis <span style="font-family: "arial" , "helvetica" , sans-serif;">is someti<span style="font-family: "arial" , "helvetica" , sans-serif;">mes caused by injuries. I do injure myself a lot<span style="font-family: "arial" , "helvetica" , sans-serif;"> - clumsy + issues caused by my <span style="font-family: "arial" , "helvetica" , sans-serif;">illnesses</span> -</span> but I don't remember anything <span style="font-family: "arial" , "helvetica" , sans-serif;">significant enough to have caused this.<span style="font-family: "arial" , "helvetica" , sans-serif;"> <span style="font-family: "arial" , "helvetica" , sans-serif;">G</span></span><span style="font-family: "arial" , "helvetica" , sans-serif;">iven my sleep disorder, <span style="font-family: "arial" , "helvetica" , sans-serif;">there is a possibility that I hurt myself in my sleep. I think th<span style="font-family: "arial" , "helvetica" , sans-serif;">is is unlikely<span style="font-family: "arial" , "helvetica" , sans-serif;">, as I'm sure I would have remember something or at least f<span style="font-family: "arial" , "helvetica" , sans-serif;">ound</span> some evidence <span style="font-family: "arial" , "helvetica" , sans-serif;">of an accident in the morning. If it was a <span style="font-family: "arial" , "helvetica" , sans-serif;">s</span>leep accident, then it's concerning for several reasons. </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I remembered today that I <span style="font-family: "arial" , "helvetica" , sans-serif;">did have</span> a <span style="font-family: "arial" , "helvetica" , sans-serif;">really <span style="font-family: "arial" , "helvetica" , sans-serif;">nasty black</span> mystery bruise in that area a w<span style="font-family: "arial" , "helvetica" , sans-serif;">hile back. It's po<span style="font-family: "arial" , "helvetica" , sans-serif;">ssibl<span style="font-family: "arial" , "helvetica" , sans-serif;">e that was from an injury I don't remember getting, or it could perhaps have been the early stages of the tissue dying, and I <span style="font-family: "arial" , "helvetica" , sans-serif;">didn't recognise it for what it was at the time.</span></span></span></span></span></span></span></span></span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Another possib<span style="font-family: "arial" , "helvetica" , sans-serif;">ility <span style="font-family: "arial" , "helvetica" , sans-serif;">t</span></span>he surgeon suggested is that <span style="font-family: "arial" , "helvetica" , sans-serif;">it</span> could be from <span style="font-family: "arial" , "helvetica" , sans-serif;">having <span style="font-family: "arial" , "helvetica" , sans-serif;">steroid</span> injections</span>. It's been a year since I had one, and I<span style="font-family: "arial" , "helvetica" , sans-serif;">'m not <span style="font-family: "arial" , "helvetica" , sans-serif;">sure if it was <span style="font-family: "arial" , "helvetica" , sans-serif;">o</span>n the same s<span style="font-family: "arial" , "helvetica" , sans-serif;">ide</span>, so I'm dubious about this being the cause. <span style="font-family: "arial" , "helvetica" , sans-serif;">I</span>f it is<span style="font-family: "arial" , "helvetica" , sans-serif;">,</span> th<span style="font-family: "arial" , "helvetica" , sans-serif;">en <span style="font-family: "arial" , "helvetica" , sans-serif;">I'm guessing that may <span style="font-family: "arial" , "helvetica" , sans-serif;">mean</span></span> I'll <span style="font-family: "arial" , "helvetica" , sans-serif;">have to drop <span style="font-family: "arial" , "helvetica" , sans-serif;">steroids as a treat<span style="font-family: "arial" , "helvetica" , sans-serif;">ment option (I can't take them orally) and it does make me a bit worried about all the other inject<span style="font-family: "arial" , "helvetica" , sans-serif;">ions I <span style="font-family: "arial" , "helvetica" , sans-serif;">t<span style="font-family: "arial" , "helvetica" , sans-serif;">ake</span></span> </span></span></span>on a regular basis. </span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The final option the surgeon suggested was that <span style="font-family: "arial" , "helvetica" , sans-serif;">i</span>t could be down to some aut<span style="font-family: "arial" , "helvetica" , sans-serif;">oimmune<span style="font-family: "arial" , "helvetica" , sans-serif;">/lupus activity... not exactly ideal</span></span> as this would raise the question of whether it's going to happen again.</span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">For now, I don't know. Like everything, I may not </span></span></span></span>get a clear answer as to what caused this. I've been referred for an MRI, and <span style="font-family: "arial" , "helvetica" , sans-serif;">possibly a biopsy after that, to firmly rule out the possibility of a tumor. If it is necrosis, the surgeo<span style="font-family: "arial" , "helvetica" , sans-serif;">n has advised not removing the dead tissue as this would be a bigger surgery, and would leave significant scarring. While I feel <span style="font-family: "arial" , "helvetica" , sans-serif;">self-conscious about the way it looks at the moment, I <span style="font-family: "arial" , "helvetica" , sans-serif;">ag<span style="font-family: "arial" , "helvetica" , sans-serif;">re<span style="font-family: "arial" , "helvetica" , sans-serif;">e that it's not worth risking<span style="font-family: "arial" , "helvetica" , sans-serif;"> it ending up looking worse. </span></span></span></span></span></span></span></span></span></span></span></span></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I'm not happy that this means the pain won't be going away, but I have lived<span style="font-family: "arial" , "helvetica" , sans-serif;"> with pain to greater or lesser degree f<span style="font-family: "arial" , "helvetica" , sans-serif;">or most of my life. I<span style="font-family: "arial" , "helvetica" , sans-serif;"> just hope that it eases up a bit, so that <span style="font-family: "arial" , "helvetica" , sans-serif;">walking isn't so uncomfortable.</span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I don't really know how I feel about all of this. Many of the same feelings I had when I wrote that last post have resurface<span style="font-family: "arial" , "helvetica" , sans-serif;">d, but I feel like I'm processing them better than I did <span style="font-family: "arial" , "helvetica" , sans-serif;">two weeks ago</span>, thou<span style="font-family: "arial" , "helvetica" , sans-serif;">gh I have been dramatically yelling "A part of me has died!" then having </span>bursts o<span style="font-family: "arial" , "helvetica" , sans-serif;">f</span> laughing and crying at the same time. Like <span style="font-family: "arial" , "helvetica" , sans-serif;">I said at the end of my last post, this <span style="font-family: "arial" , "helvetica" , sans-serif;">will pass. It will pass, it will pass, it <span style="font-family: "arial" , "helvetica" , sans-serif;">will pass, and at the meantime I'll let myself enjoy the humour of the melodrama.</span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading,</span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: large;"><span style="color: purple;"><i><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Little Miss Autoimmune. </span></span></span> </span></i></span></span> </span></span></span></span></span></span></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-30341661891289262532017-02-12T21:19:00.002+13:002017-02-28T19:21:20.473+13:00I don't know how to explain<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know how to explain what I'm feeling right now.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know how to explain how utterly panicked I feel that I'm heading into another round of doctors appointments and testing. If I try to explain this, I know that the assumption will be that I am afraid of the results, but I know the results already. This will be another non-specifically abnormal thing, attributed to one of the diseases I already probably (but never definitely) have. I am just tired. So tired of the whole process, and just thinking about it makes me want to cry.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know how to explain that I can't face the idea of there being a treatment option. The idea of a "safe" treatment means nothing to me now, because I have seen how much harm harmless-treatments can cause, and how much they've cost me in the past. Just the thought of it makes me begin to hyperventilate. I also don't know how to explain that I've fought really hard with myself to get to a place where I am okay with being me. Not me except for the illnesses, or the me I think I could be if a few things were fixed. Just okay with being me exactly how I am right now. Attempting to change things, even if it's for the better, means starting a lot of that work all over again. I don't know how to explain how devastating hope can be, when things don't work out, and that letting myself feel it is not worth getting crushed for. A treatment option is hope, and that just feels to hard to do again. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know how to explain how panicked logical responses to my feelings make me feel, because they remind me that my anxiety is not logical. That there are parts of me that will run to their own rhythm, and will drag me along behind no matter how calmly I ask them not to.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know how to explain how trapped I feel sometimes, by my allergies, by my body, by the delicate balancing act I have to work on everyday. A small thing has upset this balance recently, and I haven't figured out how to put everything back into place yet. The contradictions of things that help one disease but harm another can be exhausting, as every action holds an element of risk. I don't know how to explain how I am constantly both proud of myself for continuing to function and terrified by every choice that allows me to continue doing that. </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know how to explain how little patience I have for people who mock or criticise the ways I choose to manage diseases they don't have and don't comprehend. I don't know how to explain how sick I am of justifying my diet, sick of trying to elicit some form of understanding and knowing that I'm not going to get anywhere because it's just more fun to mock paleo/gluten-free/anything-that-differs-from-the-norm than it is to take a moment to show some compassion. You don't need to believe it works to show some empathy for the desperation that is making people want to try it, you just need to let go of your need to be right.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know how to explain that no one can help me with any of this, and that makes me afraid to talk about it, because all that does is make other people feel bad. And I don't know how to explain how that sometimes I just need to say it all anyway, and that's why I'm writing this down.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know how to explain that I will be fine tomorrow. All of this will be easier, and I will feel okay again, but tonight it feels hard. Tonight I will be melodramatic, and write every feeling that comes into my head with the hopes of releasing them from me and letting them <span style="font-family: "arial" , "helvetica" , sans-serif;">g</span>o.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">There is nothing that I need, except to wait, and accept all of these feelings good and bad. As awful and desperate as I feel right now, there is also a calm part
of me that knows it's all okay and that these feelings are temporary. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Tonight is hard, but tomorrow will be better.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading</span><br />
<span style="color: purple;"><i><span style="font-size: large;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Little Miss Autoimmune</span></span></i></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-27004505314253621792017-02-02T23:07:00.000+13:002017-02-02T23:07:18.274+13:00The Tortoise is Graduating!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNH4AQPRmSPo79mY13jaBE9BzliFhrNQN_VaQR-UYXJaq9WJxR3skeI8UiU4IuBMY9ePJTiQopbgrY_HQ7cOdgk6Yw6ubM4GB6awj8EoiSqtC0QVYIfXdh3h_N5eOh2TyX32whufX6VAxL/s1600/Graduation.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNH4AQPRmSPo79mY13jaBE9BzliFhrNQN_VaQR-UYXJaq9WJxR3skeI8UiU4IuBMY9ePJTiQopbgrY_HQ7cOdgk6Yw6ubM4GB6awj8EoiSqtC0QVYIfXdh3h_N5eOh2TyX32whufX6VAxL/s320/Graduation.jpg" width="320" /></a><span style="font-family: Arial,Helvetica,sans-serif;">I got an envelope with this sticker on it in the mail the other day, and I stood in my mail room and grinned. My smile wasn’t for the actual graduation. I won’t be attending the ceremony – I’m teaching that day, plus it will be a lot of standing outside in the sun and then hours of sitting, which is not terribly me-friendly. And it wasn’t for the qualification itself either – this is a piece of paper that qualifies me to do… well, not much really, other than the job I’ve already been doing for several years. <br /><br />My grin was because I did it. I finished. It took me seven times longer than it would have taken a full-time, healthy student to complete, but I still did it. <br /><br />I started this qualification – a diploma in creative writing – back in 2009. I completed one paper, before I had to drop out, because my health wasn’t good, and my mum was very ill at the time as well. It just seemed too stressful. <br /><br />Dropping out wasn’t an unusual thing for me at that point in my life. My physical health and anxiety had caused me to drop out of pretty much every course – formal and informal – that I’d ever tried to take, and it was only due to incredibly supportive bosses (who suggested I take leave instead every time I tried to quit) that I had managed to hold down part time employment. <br /><br />This time was slightly different though. I’d managed to complete the paper before dropping out. Even though I hadn’t finished the qualification all in one go, I had at least done enough to get that first lot of credits. In some ways, I think completing that first paper was a turning point for me. <br /><br />Initially, this whole exercise was mostly just for my own interest, but over the last couple of years it became more important to me to finish. I work teaching creative writing, and having subject matter and adult education qualifications (will finish the adult ed. one this year!) will likely become important to continuing to do this in the future. <br /><br />Over the next seven years, I completed the rest of the papers – one at a time, and sometimes with yearlong gaps in between. I had plenty of free time, but not always enough spoons to stretch to cover study, and trying to do assignments while flaring badly was painful and exhausting. There were many times where this all felt hopeless, and I wanted to give up. I felt like I would be studying for the rest of my life, and it was all beginning to feel a bit pointless. But then, I started to embrace life as a tortoise. It wasn’t going to happen quickly, but as long as I <i>didn’t</i> give up, I would eventually get there. One by one, I completed the papers, and now here I am, grinning at an envelope like an idiot.<br /><br />Doing anything with chronic illness is often harder and slower, but sometimes that makes it just that much sweeter when you finally get there. I think graduating means more to me now, than it would have if I had completed the course that first year. It tells me not only that I can do the work, but that I can work through the hard stuff, even when it seems like I can’t at first.<br /><br />If you’re in the middle of battling managing chronic illness and study and feel like giving up… it is okay if you do. It is a really hard thing, and sometimes saying enough is enough is the right choice. But you know what? You CAN do this. It will be hard and mostly likely slow, and there may be times where you have to pull out of one or more papers and come back to them later. But tortoises still make it to the end eventually, and man is it going to feel so good when you do.<br /><br />Thanks for reading<br /><span style="color: purple;"><i><span style="font-size: large;"><span style="font-size: x-large;">Little Miss Autoimmune</span></span></i></span><b> </b></span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;"><b>On a related, but slightly self-promotion-y note - some of the stories I wrote during my studies are now published in my first short story collection, <i>Symbolic Death</i>. You can get a free copy of it <a href="https://www.helenvfletcher.com/newsletter/" target="_blank">here</a>.</b><br /></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com1tag:blogger.com,1999:blog-1301503337975878137.post-84935872866791260602016-10-22T21:12:00.001+13:002016-10-22T21:21:49.133+13:00Can't someone else be in charge?<span style="font-family: "arial" , "helvetica" , sans-serif;">Yesterday I saw my gastro specialist. Despite the fact that I knew nothing would change at the appointment, I've been really anxious since I found out I had to go back and see him again. I couldn't entirely explain my feelings at first -
this was the same specialist I wrote about in <a href="http://littlemissautoimmune.blogspot.co.nz/2013/03/the-pitfalls-of-hope.html" target="_blank">the pitfalls of hope</a>, but
this time around I wasn't hoping for anything. I knew that whether he gave me a diagnosis or
not, nothing was going to change. My body simply doesn't work properly,
and though there are bad days where I feel angry, frustrated and want
to fight that, most of the time I'm getting better at accepting that
it's just the way it is, and continuing to live my life, malfunctioning body or not.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">When I've
got my hopes up about appointments in the past, I don't think it's been
so much about wanting a diagnosis or wanting things to change, but more
about wanting someone to tell me what to do. To make the decisions about
medication and other treatments. To tell me what I'm physically capable
of without ending up stuck somewhere because my limbs stop working suddenly, or making myself sicker. To tell me
which symptoms are serious and which I can ignore, and to know that
someone else is looking out for anything life-threatening, so that that
responsibility doesn't always fall on me.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I realised eventually, that the thing that
was making me anxious about this appointment was having to confront the
reality that the doctors don't know the answers either.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">My GP told me that
specialists don't like cases like mine. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">My
illnesses and unexplained symptoms overlap so many different
specialties, and so the instinct seems to be to try and
pass me on to one of the others. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">They want
clear cut answers and I am a blurry mess of symptoms and
non-specifically abnormal test results (<span style="font-family: "arial" , "helvetica" , sans-serif;">on</span> a side note - does anyone else
think "Non-Specifically Abnormal" would make a great T-shirt?)</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> I mean no disrespect to my medical professionals when I say
that - they are all lovely people and very good at what they do.
But they don't entirely <i>know</i> what to do with me. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">When you
have a lot of health problems, you do end up mostly managing them on
your own.</span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't feel qualified to be
managing this many diseases -
I mean if they were someone else's diseases no one in
their right would let me be in charge. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">If the doctors can't figure it out, how on earth
can I even begin to? </span><span style="font-family: "arial" , "helvetica" , sans-serif;">At times I have no idea if
I'm making things better or worse, and my medication list is so
complicated that my pharmacists have made mistakes with it on a number
of occasions. It does leave me questioning if I can possibly get it
right when even the professionals can't always<span style="font-family: "arial" , "helvetica" , sans-serif;">.</span> </span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">In a weird way, acknowledging my feelings about all this, made the appointment a lot less upsetting than previous ones have been. I went in there accepting that I wasn't going to get answers, but also accepting that it's totally understandable for me to still want them. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So, what did happen at the appointment? Well... I'd like to introduce my new diagnosis Little Miss <a href="http://www.medicinenet.com/pernicious_anemia/page2.htm" target="_blank">Pernicious Anemia</a>. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5r0XvUSd4H0_4fhjc52sTx0sfBjgHxxQmQ2KYt2PCap3SlQK24r08s_9xt5pCfL9bqc_1W7ejdiIfnVlVkDlTxX4dtg5jUKWxJ925E80bffr5lAEfjLlDTvmgWwfNbkx-jGSPt6dRCrqy/s1600/Little+Miss+Pernicious+Anemia.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Cartoon picture of a face with hair in pigtails and vampire fangs" border="0" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5r0XvUSd4H0_4fhjc52sTx0sfBjgHxxQmQ2KYt2PCap3SlQK24r08s_9xt5pCfL9bqc_1W7ejdiIfnVlVkDlTxX4dtg5jUKWxJ925E80bffr5lAEfjLlDTvmgWwfNbkx-jGSPt6dRCrqy/s400/Little+Miss+Pernicious+Anemia.png" title="" width="400" /></a></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Like her friends she is an autoimmune disorder, and in her spare time likes to attack the intrinsic factor (the thing that lets you absorb vitamin B12) in my stomach. Despite the synonym for deadly in her name, she is not life threatening <span style="font-family: "arial" , "helvetica" , sans-serif;">so</span> long as I keep up my B12 levels with supplementation.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This wasn't a surprise. I've had severely low B12 levels this year, and given my history of autoimmune disorders and the fact that the antibodies test was positive, I knew Pernicious Anemia was the likely cause. It doesn't really change anything, other than I will need to be on B12 injections for the rest of my life, rather than just as a temporary measure, and I may end up with further stomach issues later on. The specialist has suggested we also test for <a href="http://emedicine.medscape.com/article/212861-overview" target="_blank">bacterial overgrowth syndrome</a>, so in a couple of weeks I'll be spending the <span style="font-family: "arial" , "helvetica" , sans-serif;">day</span> at the hospital taking a breath test every half hour. Bacterial overgrowth is treatable in the United States, but apparently we don't use the same medications here in New Zealand, so if I have it, it might explain a few things, but again, the diagnosis wouldn't change much.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">One really good thing that happened at the appointment though, was that the specialist told me that he thin<span style="font-family: "arial" , "helvetica" , sans-serif;">k</span>s my attitude towards my health is very realistic, and that I seem to be using a lot of common sense in the way I manage it. He also acknowledged modern medicine hasn't quite figured out people like me yet. There are lots of interesting things happening<span style="font-family: "arial" , "helvetica" , sans-serif;"> research<span style="font-family: "arial" , "helvetica" , sans-serif;">-wise, but in the meantime, we have<span style="font-family: "arial" , "helvetica" , sans-serif;"> to just do the best we can to keep well, while the medical world catche<span style="font-family: "arial" , "helvetica" , sans-serif;">s up with us.</span></span> </span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It was <span style="font-family: "arial" , "helvetica" , sans-serif;">strangely comforting</span> to hear the things I had been thinking about, leading up to the appointment, put into words by the specialist as well. This isn't quite as good as someone giv<span style="font-family: "arial" , "helvetica" , sans-serif;">ing</span> me answers about what to do, but it as at least <span style="font-family: "arial" , "helvetica" , sans-serif;">reassurance</span> that I'm not quite as incapable of managing things as I sometimes feel. I still don't want to be in charge of this mess, but if I am, I guess it's good to know that at least one person thinks my instincts are worth trusting. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: purple;"><i><span style="font-size: large;">Little Miss Autoimmune</span></i></span></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-66719824883245287352016-07-28T16:34:00.000+12:002016-07-28T16:34:34.246+12:00Disability and Ableism<span style="font-family: Arial,Helvetica,sans-serif;">I don’t like conflict. I mean I really don’t like conflict. In the last few years I’ve developed a fun symptom where if I get really angry or upset, my blood pressure drops and I run the risk of passing out. As a result, I’m now a pretty calm person and I avoid potentially emotionally-laden conversations, especially online.<br /><br />But there have been certain discussions lately that have been harder to ignore. The film <i>Me Before You</i> has prompted a lot of people to make comments about how they would kill themselves if they were to become disabled, in arguments defending the film.<br /><br />I find it baffling that any reasonable, modern person would consider this an okay thing to say. My initial instinct was to avoid dealing with this, but when a comment of this nature was made on my facebook, I saw just how widespread and accepted these ideas are, and realised that most people don’t even understand that what they are saying is harmful. As difficult as it is for me to talk about this stuff, I can’t expect the world’s perception of disability to change if I am not willing challenge to it. <br /><br />Saying that you would kill yourself if you became disabled, is not any different to saying you would kill yourself if you were gay. I understand that this may be confronting to hear, but that doesn’t make it any less true. The only difference is that one of these statements is considered socially acceptable to say, despite the hurt it causes, and one of them is rightfully condemned because of its harmful nature. <br /><br />To be really clear, I am not against the idea of euthanasia (I am not necessarily for it either, but this is not what this post is about.) If you say you would kill yourself if you were to become disabled, you are not talking about euthanasia, or even talking about your own life, but instead about your perception of what a disabled life is. Whether this is your intention or not, you are effectively saying that you do not believe disabled people’s lives are worth living. Effectively saying <i>my</i> life is not worth living, that killing myself would be a reasonable decision. <br /><br />Online, posts are read by able-bodied and disabled people alike, and in all likelihood at least one of those people is struggling to find reasons to stay alive right now. A major life change, like a new disability, will often involve a process of grief, and suicidal thoughts may be a part of that. That stage of adjustment and grief is <b>not</b> what life with disability is going to be like forever, but it’s hard to know that when you’re in middle of it. If someone was suicidal because of depression, personal crisis or any other reason people would give them support and list reasons to live. However somehow it’s seen as okay for people to publicly state that they would kill themselves if in that position, when it comes to disability. Depression can be feel just as debilitating as a physical disability, yet it would not be okay to say “I would just kill myself I were depressed like you”. If these types of comments were made about any other issue, they would be labelled as bullying, and removed from forums.<br /><br />To come back to my earlier point, there is absolutely nothing, NOTHING, wrong with being gay. There is, however, something difficult about being gay in a world that contains homophobia.<br /><br />There is also nothing inherently bad about being disabled. But there is something very difficult about being disabled in a world that is set up for, and rotates around, able-bodied people.<br /><br />I’m going to say that again, because I get that for some people this will be a perspective shift that is difficult to make. There is nothing bad about being disabled, it is the world which we all create and contribute to which makes it feel that way.<br /><br />There will be no choice over whether or not you become disabled in your lifetime. Illness or injury may strike, and the results of that are out of your control. It is within your control, however, to influence what type of world you would end up disabled in. People feel like they would kill themselves if they were disabled, because they live in a world where that is an okay thing to say. Where accessibility is an afterthought, where disabled people are seen as un-dateable and un-hireable. Where getting even the most basic of needs met requires fighting red tape in underfunded and broken health, welfare, and social service systems. Where, as a disabled person, the only representation you see of yourself in film is where the characters kill themselves because they don’t feel a life like yours is worth living, and where able-bodied people walk out of the cinema loudly proclaiming how lucky and grateful they are not to be like you. <br /><br />This does all add up to feeling like the world supports your right to die, more than they are willing to support your right to live.<br /><br />This week 19 disabled people lost their lives, and 25 more were injured, at the hands of someone who is reported to have said he was trying to rid the world of handicapped people. I’m sure many people would like to dismiss this as the actions of someone deranged, but I’m not sure I can do that so easily. I can’t help but draw mental comparisons to the climate of ableism we live in, and the violence that stems from the climates of racism and homophobia. <br /><br />Instead of saying that you would kill yourself if you became disabled, how about doing something that would make the world more liveable for disabled people? How about changing things, so that suicide doesn’t feel like the only option.<br /><br />I know, it seems like an unreasonable ask. You are just one person, and you can’t possibly change things when the entire world is set up for able-bodied people. But every little change can make a difference. Even if it’s just to one person.<br /><br />• If you are setting up an event, is it possible to use an accessible venue? I often hear “but will disabled people even want to come to this?” – if you want to go to it, it’s likely someone with a disability will want to as well. If you can’t find a suitable accessible venue, ask the venue you do use what provisions can be made for people with disabilities attending. This doesn’t need to be an argument, sometimes all it takes is someone asking the question to draw attention to the issue. If you decide not to use a venue because it’s not disability-friendly, tell them that’s the reason – bringing it to their awareness gives the owners the opportunity to do something about it.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />• If you are an architect, game developer, business owner, webmaster, theatre creator – anything where you are creating something – are there ways to make your creation more accessible? If you’re not sure, is consultation with people with disabilities possible? For example, is there really any reason to make the main entrance stairs instead of a ramp, or is that just what you’re used to? If you are not in charge of making these decisions, can you challenge the person who is to think about these things? Lack of accessibility is often an oversight, rather than an intentional snub, and bringing it to the front of people’s minds can make a huge difference. I know I could probably do better on making the websites I run more accessible – this is a small thing, but it’s a change I can make.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />• Try not to get angry or defensive if someone points out that something is not accessible. I was shocked at how nasty people became when it was pointed out that <i>Pokemon Go</i> is not accessible. I know you all love catching Pokemon, and there are some great things about the active nature of the game, but that doesn’t change the fact that it isn’t accessible for everyone. It’s okay to enjoy things that aren’t disability-friendly. It’s not okay, however, to get defensive, chuck a tanty and spew horrifying abuse when the lack of accessibility is pointed out to you. Disabled people do not need to “just go off and die” because you think it might interfere with your fun. Accept it, help look for workarounds if you can, and keep accessibility in mind the next time you are creating something.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />• Challenge people if you hear them say derogatory things about disability. If you wouldn’t put up with racism, sexism or homophobia, don’t put up with this either.<br /><br />This has been a hard post to write, and I accept that not everyone will agree with what I’m saying. Other people will have different perspectives on these issues, and that’s okay. Again, I am not making judgements about euthanasia itself here. That is a completely different issue. My hope is just that one day, disability won’t be that big of an issue, because the world will have figured out how to make it work. I know that the things I’ve suggested here won’t change the world, but they are a start.<br /><br />Thanks for reading,<br /><span style="color: purple;"><i><span style="font-size: large;">Little Miss Autoimmune</span></i></span></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-26997833088294014632016-06-01T14:43:00.000+12:002016-06-01T14:43:22.755+12:00She Chose Down<span style="font-family: Arial,Helvetica,sans-serif;">A couple of months ago, whenever anyone asked me how I was, I sent them this video.</span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;">I think most people were just confused by this, but at the time I felt it was the best explanation I could give for what I was feeling. Labyrinth is one of my favourite movies, and I've written before about some of the meaning I think can be drawn from <a href="http://littlemissautoimmune.blogspot.co.nz/2011/09/happiness-is.html" target="_blank">re-watching Labyrinth as an adult</a>. As a child I never realised that in this scene, Sarah actually answers the riddle correctly. Yet she still falls through the floor a moment later.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />I screwed things up this year. I made a choice - seemingly the right choice - but things went badly. Then I made another choice, although this time it really was the wrong one, and I ended up in a massive dark hole. This is the unfortunate reality with chronic illness. You can do your research, listen to expert advice, weigh up your options… but there are still no guarantees.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />A few months ago, after my <a href="http://littlemissautoimmune.blogspot.co.nz/2015/12/so-many-sleep-disorders.html" target="_blank">sleep study</a> provided a whole bunch of inconclusive results, I decided to trial a drug-free treatment option to help with my sleep problems. It seemed like a safe option - it's been shown in clinical trials to be more effective than medication at treating insomnia, and it was recommended by my specialist. Sounds like the right choice, yes? Unfortunately no. Not only did it not help with <a href="http://littlemissautoimmune.blogspot.co.nz/2015/09/stress-panic-and-fight-or-flight.html" target="_blank">my parasomnia</a>, it actually increased it, and the resulting lack of sleep caused a significant flare of my autoimmune disorders. So I made another choice, medication this time, and while it did improve the parasomnia symptoms a little, it also had a significantly detrimental effect on my physical and mental wellbeing. I ended up in more pain than I've been in since... well, probably since I very first got ill. I went from doing weekly dance classes to struggling to walk to the bathroom, and I experienced far darker places with anxiety and depression than I care to revisit. Luckily my doctor was on to it, and recognised that the medication had become dangerous for me. I couldn’t stop it immediately, but she gave me instructions on how to taper it off safely. In the middle of all this, my blood work also revealed an unrelated medical condition, which fortunately was treatable but caused some neurological symptoms and added to the depression in the meantime.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />So with all that going on, you would have thought I’d have stopped the drug-free treatment as well right? Well… no.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />The choices I’d made had gone so horribly wrong, I found myself stuck in a decision paralysis. Everyone – my doctor, my family, my friends, even my own body were telling me I needed to stop the treatment programme, and just do whatever I could to get sleep and recover, but I was so terrified of making yet another bad choice, I kept going with it. I also knew I needed steroids to get the autoimmune stuff under control, but weighing up the positives vs the likely side-effect of insomnia seemed too hard a decision to make. </span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />My doctor was on sudden and indefinite leave, which meant there wasn’t anyone there to step in and tell me what to do. So I did nothing. I sat back and watched myself get sicker, because it seemed safer than making yet another bad decision. This of course ignored the fact that avoiding making a decision <i>is</i> a decision in and of itself. </span><br />
<br /><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Arial,Helvetica,sans-serif;">Sticking my head in the sand was not my most grown-up response, and
after a few weeks of freaking out and crying lots I had to push my fear
aside, make some choices and try get my life back on track. I was lucky
this time. Stopping the treatment programme helped immensely, and in a
bizarre turn of events, the steroids actually made me sleep for nine
hours straight instead of the more common side effect of insomnia. </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;">I went through cycles of guilt, regret, blame and anger over what happened. Was it stupid of me to continue with treatments that were clearly making me sicker? Yes. Do I wish I'd never made the choices I did? Yes. Is that going to change anything…? No. It was incredibly frustrating and sad to find myself in the position of watching my health decline, but I learnt something from this. I've always been afraid of what would happen if my joint pain was to become really active again, or if my teenage depression and anxiety were to return. And well... I've discovered that the answer is that it's pretty awful. But I’m not the person I was as a teenager, nor am I the person I was 12 years ago when my physical health problems first got bad. </span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />I found reserves of strength within myself that I didn't know I had. As utterly horrible as things were, I found ways to keep going even when giving up felt like a much preferable option. When I wasn't sure if I <i>could</i> keep going, I reached out for help and my incredible friends and family reached back. They were there, supporting me - in person, with texts and phone calls, or messages from the other side of the world – through even the worst moments. </span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;">I've read that when Jim Henson, creator of Labyrinth was asked why Sarah falls through the floor after getting the riddle correct, he admitted he didn't know. Before falling, Sarah does say "It's a piece of cake" and there’s a pattern of bad things happening in the Labyrinth whenever someone says this, but other than that there’s no logic to it and it's not fair. I don't know why treatments that were supposed to be safe went so badly wrong for me. When you have multiple medical conditions there's more chance for negative interactions, but other than there's not really a reason. To quote Sarah again "It's not fair, but that's just the way it is."</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />My doctor is now back and I have a sleep specialist appointment coming up, so I will likely have to make some decisions about treatments soon. At the moment I’m still in the stage of wanting to reject everything, hoping to avoid making the wrong choice again, but I'm aware that didn’t exactly work out that well for me last time. Not seeking further treatment could be as detrimental as this whole episode has been, and these are things that I'm going to have to weigh up, all the while knowing that it's entirely possible that I may again make the wrong choice. </span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />I've come to realise that fear of what's happened in the past is not worth ruminating on, because I’m not the same me, and it will never be the same set of circumstances again. I'm still not be back to where I was before all this happened but I’ve learnt things along the way and I’m hopeful that my health will continue to improve. It's not fair that I have to make these kinds of choices, but I can either fixate on resenting that and the bad of what's happened, or I can hope for the best, and know that I will most likely survive the worst. </span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />You never know, maybe this time I'll choose up.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br />Thanks for reading,<br /><span style="color: purple;"><span style="font-size: large;"><i>Little Miss Autoimmune</i></span></span></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0tag:blogger.com,1999:blog-1301503337975878137.post-25545841831472170482016-03-09T21:59:00.000+13:002016-03-09T21:59:03.095+13:00Dear Polly, thanks, but my life isn’t shitty<span style="font-family: "arial" , "helvetica" , sans-serif;">People have a lot of misconceptions about disabilities, and I understand why – the word spans a huge spectrum of life experiences. But one of the biggest misconceptions, which I can’t really get past, is the idea that our lives are automatically bad or pitiable.<br /><br />When you find out that someone has a disability, all you know is that some part of the<span style="font-family: "arial" , "helvetica" , sans-serif;">m</span> does not work in the same way it does in able-bodied people. You would probably be right in assuming that some aspects of their life are harder than they are for other people, but beyond that you can’t know anything about their intelligence, happiness, or level of achievement. There are probably disabled people out there who are happier than you. There are probably disabled people out there who have achieved more than you. There are probably disabled people out there who are kinder, meaner, prettier, uglier or better dancers than you, because all a disability tells you is that one part of the<span style="font-family: "arial" , "helvetica" , sans-serif;">m</span> doesn’t work in the average way.<br /><br />But this isn’t the message we get from the world.<br /><br />Recently I read this <a href="http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11586037" target="_blank">article from Polly Gillespie</a>, and it frustrates me immensely. I can see why she was angry at the man in the wheelchair, and I do think he was behaving badly. I don’t think she was doing anything wrong by using the disabled toilet, but I feel her description of disabled people as “you poor infirm, elderly, arthritic, mumps-bearing person” buying incontinence pads is childish and uncalled for, as is calling someone in a wheelchair “shorty”. The part that really bothered me though was the assumption that a disabled person’s life is “shitty” or that it is <span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">necessary</span></span> to feel sorry for them. To be fair, we have all said stupid things in the heat of an argument, but I find it concerning that once she had a clear head, she and (presumably) at least one editor didn’t see a problem with putting this out there in the world. <br /> </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">My intention in writing this is not to have a go at Polly, as this <span style="font-family: "arial" , "helvetica" , sans-serif;">doe</span>s not stem from a problem <span style="font-family: "arial" , "helvetica" , sans-serif;">within her, but <span style="font-family: "arial" , "helvetica" , sans-serif;">from</span> the <span style="font-family: "arial" , "helvetica" , sans-serif;">way <span style="font-family: "arial" , "helvetica" , sans-serif;">disabilities</span> are v<span style="font-family: "arial" , "helvetica" , sans-serif;">iewed</span> in general</span></span>. I <span style="font-family: "arial" , "helvetica" , sans-serif;">us<span style="font-family: "arial" , "helvetica" , sans-serif;">e</span></span> this as an example, but this attitude is everywhere, and often the people making these kinds of statements do them with good intentions. People may believe that they are being compassionate or offering a kindness in feeling sorry for someone, but there is a huge difference between compassion and pity. If you’re confused about what that difference is, <a href="https://www.youtube.com/watch?v=1Evwgu369Jw" target="_blank">Brené Brown’s beautiful short film</a> about the difference between empathy and sympathy might be a good place to start.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />I really appreciate it when people show consideration and compassion towards the fact that some parts of my life are hard.<br /><br />I hate it when people assume my life is shitty because of these things.<br /><br />It makes me feel ashamed and embarrassed and question my own worth. It makes me feel as if my life is seen as something broken – that I will only be seen as worthy or whole if I get better or am fixed. <br /><br />I can’t count how many times strangers have offered to pray for me to be healed, given me unsolicited (and almost always inaccurate) “medical” advice, or <span style="font-family: "arial" , "helvetica" , sans-serif;">spouted diatribes</span> about how a positive attitude will be my saviour. Years ago, I wrote about how <a href="http://littlemissautoimmune.blogspot.co.nz/2010/05/judgements.html" target="_blank">a stranger had lectured me</a> about how I shouldn’t accept walking with a stick, because I should be striving for something “better”. In that case, I asked him why he was so sure a life walking without a stick was better than walking with one, and he found he didn’t have an answer for that. In these cases every one of those people was coming from a well<span style="font-family: "arial" , "helvetica" , sans-serif;">-</span>meaning place of good intentions, so sure that <span style="font-family: "arial" , "helvetica" , sans-serif;">their advice would make me </span>“better”, but none of them took the time to find out what my life is like now. <br /><br />Disabled people are not broken. We don’t need to be “fixed”. This might seem like a contradiction when we are often looking for medications<span style="font-family: "arial" , "helvetica" , sans-serif;">,</span> treatments or cures, but these are about making the hard parts of our lives easier or less painful, not about assuming a life without disability is automatically better.<br /><br />Recently someone asked me why I was walking with a stick, and when I explained, he said “well I suppose a lot of people feel sorry for you.” I think I surprised even myself when the words “But I don’t need anyone to pity me, my life is awesome” came out of my mouth. <br /><br />My life is awesome. It will be awesome if my disability goes away. It will be awesome if it stays. Yes, it is incredibly hard and painful sometimes, and compassion or help for th<span style="font-family: "arial" , "helvetica" , sans-serif;">at</span> hard stuff would be welcome. But pity does not help either of us, so let’s leave that at the door thanks.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: purple;"><i><span style="font-size: large;">Little Miss Autoimmune</span></i></span></span>Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com1tag:blogger.com,1999:blog-1301503337975878137.post-58804774318650897232016-02-10T15:24:00.001+13:002016-02-10T16:44:32.825+13:00Spoons for the Lupus God!<span style="font-family: "arial" , "helvetica" , sans-serif;">I've been feeling pretty unwell this week. The last four days I've taken painkillers. This is rare for me - I usually try to avoid them if I can as my stomach is not exactly a fan - but the last couple of days I even switched to stronger ones as I just couldn't cope with escalating joint pain. I've also been having problems with nausea, dizziness, rashes, joint swelling and of course good old fatigue has been kicking my butt. I'd put most of this down to the heat and sun exposure (middle of summer here in New Zealand) but I was getting worried, as I felt so low on <a href="http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/" target="_blank">spoons</a>, despite cutting down on what I was doing. Last night I found myself sitting on the floor crying, thinking "am I really going to have to cut back even more? Can't I just have a life instead of counting spoons all the time?" Then I realised my face was sore, checked the mirror, and low and behold... <a href="http://littlemissautoimmune.blogspot.co.nz/2012/12/butterfly-rash.html" target="_blank">Butterfly Rash</a>. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have a bit of a love-hate relationship with the butterfly rash. Obviously it's appearance is not really a good thing, because it means full blown lupus flare, but at the same time, it's reassuring in that once I see it, I know exactly why I feel crap and also, most importantly, that it will pass. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I was talking to my friend Kendra from ACuteAngle about spoons, flares and the fact that the symbol for lupus is a purple butterfly, and she made me this fantastic cartoon:</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEqgpSJ0tdc0ZMK6jL974GyoqyRmmxzSLW1Fhf67oMzJl0ysp6NIJ8wn6pmzBWRCRt3WJeY-5oe6jH1ulJgOZ6uMxlOj8VKTLlRseyeJCu6PfAa-UX7X25k3Wz8pYXT2m_7E6z_nDEalPL/s1600/Lupus+Gods+%255B22498%255D.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Cartoon of purple butterfly eating spoons" border="0" height="255" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEqgpSJ0tdc0ZMK6jL974GyoqyRmmxzSLW1Fhf67oMzJl0ysp6NIJ8wn6pmzBWRCRt3WJeY-5oe6jH1ulJgOZ6uMxlOj8VKTLlRseyeJCu6PfAa-UX7X25k3Wz8pYXT2m_7E6z_nDEalPL/s400/Lupus+Gods+%255B22498%255D.png" title="" width="400" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Lupus God Sacrifice</span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This sums up so amazingly well what a flare feels like. When you're flaring, all the spoons get sacrificed to appease the lupus god, and there's not a whole lot left for anything else. Lupus is eating up ALL my spoons at the moment. But he's got to get full eventually, right? RIGHT?</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj42cFYuge-mi9FHRtHMeNjEhYQWLX0zcIvuZ8CIExg1xTmC5fmKrEMltzMg0R2AVzSjoaSR3DaHhv7Mff9T9dXg9pRxeynrE6aKFn-wrng8T_djfjBHLwN7lG51gpsQmGo5A4qErBBaUUR/s1600/Fork+Lupus.bmp" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="172" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj42cFYuge-mi9FHRtHMeNjEhYQWLX0zcIvuZ8CIExg1xTmC5fmKrEMltzMg0R2AVzSjoaSR3DaHhv7Mff9T9dXg9pRxeynrE6aKFn-wrng8T_djfjBHLwN7lG51gpsQmGo5A4qErBBaUUR/s400/Fork+Lupus.bmp" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;">Fork Lupus</span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">If you'd like to check out more of Kendra's awesome cartoons, you can find them on the <a href="http://acuteangle.me/comic/it-grows-back/" target="_blank">ACuteAngle Website </a>or follow her on <a href="https://www.facebook.com/acuteangle.me/?fref=ts" target="_blank">Facebook</a>. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thanks for reading,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: purple;"><span style="font-size: large;"><i>Little Miss Autoimmune</i></span></span></span><br />
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<br />Helen Vivienne Fletcherhttp://www.blogger.com/profile/06059823326006132466noreply@blogger.com0