Why couldn't a butterfly rash look like this?

UPDATE 13/12/12  A lot of people are finding this post looking for images of butterfly rashes (malar/lupus rash.) You'll find a picture of me with a real lupus butterfly rash photo here.

Those of familiar with autoimmune disorders will know from the title where this post is going. For those of you who don’t – Butterfly rash = lupus.

For a while I’ve been getting a whole host of symptoms that couldn’t be explained by any of my existing conditions, one of them being a rash across my cheeks, known as a malar or butterfly rash.

I think I’d been a little bit in denial about the new symptoms. I ignored a lot of things or dealt with them by not really dealing with them – for example, some of you will remember the day when I began to have a large amount of bleeding from my mouth. After spending some time spitting blood in the sink, I made an appointment with my dentist. Part of me (and many of my friends) knew very well that I should be seeing a doctor, not a dentist at this stage, but this was a convenient way for me to pretend I was dealing with the problem without really dealing with it. Incidentally, the same day I saw the dentist, I saw my dermatologist and when I mentioned in passing the rash on my face (which I didn’t have that day) she looked alarmed and asked if I’d been tested for lupus. I avoided that by saying yes, I had been tested for lupus and just didn’t mention that my last ANA test was seven years ago and it was positive. I convinced myself the face-rash was just the rash I get from sunlight (which in hindsight was slightly ridiculous, as a sunlight rash is also a symptom of lupus.)
 

Anyway, dentist noted I had a lot of inflammation and a very dry mouth and said he thought it was either an “autoimmune something” or a result of meds.

Skip forward a few months and new symptoms were becoming harder to ignore. Dry eyes were meaning I was getting vision problems, pins and needles in my hands and feet were making my walking a bit wonky-donkey, and my hands started turning blue when I got cold. I was covered with skin ulcers and blisters, most of which quickly became infected. I finally bit the bullet and went to the doctor.

I knew very well that my symptoms indicated lupus, but I avoided dealing with the problem by convincing myself it was sjogrens disease. Lupus and Sjogrens disease are actually very similar. There’s a huge overlap in the symptoms, though I believe the butterfly-rash and sunlight rash are more related to lupus.

A month ago I saw my rheumatologist. After listening to my list of symptoms, he told me they all fit with lupus. At that stage he thought it might drug induced lupus from my Psoriatic Arthritis medications.
 

On Thursday I saw my nurse. My bloods test showed quite clearly not drug induced lupus, but lupus lupus (SLE.) She went back over my notes and said she suspects I may have had it undiagnosed all along, which would explain why I’ve been so unwell and taken so long to respond to any medications.
 

I think the moral of the story here is if you’re getting sick, don’t ignore it. Pretending it wasn’t happening did not make the problem go away – in fact I just got sicker. I try not to play the “what if?” game. It’s hard when I look back on things and say “what if this had been picked up ten years ago?” but as one of my good friends pointed out today “better now than letting it progress for another ten years.”
 

I’ve been really scared this year. Scared by the new symptoms. Scared it might be something serious. Scared to get a diagnosis. Scared I might NOT get a diagnosis and just be left wondering.
 

Well – new symptoms are scary whether you acknowledge them or not. If it’s serious, it will still be serious whether you ignore it or not and in the end, a diagnosis is just one step closer to treatment.
 

Turns out treatment for me might be as simple as adding just one more drug. I’ll know more in the new year. In the mean time, if you’re worried about something – go to the doctor. You don’t want to be asking “what if?” a few years down the track.

Little Miss Autoimmune

Changing Goals (and some shameless self-promotion)

I first got sick when I was nine. Not really sure what my goals were back then. I seem to remember something about wanting to be the safety pack monitor and/or bell ringer.

I was 19 when I got really sick, and was diagnosed with Psoriatic Arthritis. I know what my goals were then. I was at drama school, I wanted to do another year there and then go on to film school. I wanted to be and actor and filmmaker.

It became clear to me that I was too sick to be able to go back to drama school (at least in part when they suggested to me I was too sick to come back!) For a while I continued pursuing the goal of working in acting and filmmaking. I continued making my own films, helping out my friends with acting in and editing their films, and did a lot of extra work in New Zealand TV programmes, commercials and films (if you watch King Kong really closely, you’ll see me running around and screaming in the background.)

I’m not sure when exactly it was that I realised this wasn’t working.

I know there was the time when I sat at the computer trying to edit my friend’s film, crying because my back hurt so much. And then the film after that when I couldn’t even finish the work on it.

There was the day after my final day on the King Kong set, where I lay flat on my back wondering if I was actually going to be able to get up ever again.

There was the play, where we had to re-choreography everything between the second and third show, because I had flared so badly I couldn’t do anything we’d planned anymore.

I don’t think there was a single moment, that meant change - just a slow realisation that my earlier goals weren’t right for me anymore.

Even before I got sick, I’d known I wasn’t totally happy with the way my life was going, but I wasn’t entirely sure why. As a teenager, I’d loved spending my time acting and filmmaking, but when I thought back on it I realised it wasn’t really the acting or filmmaking that I loved. What I loved was spending time coming up with a story for a sketch or a film, or a short soap opera competition and then seeing that come to life. I realised, what I really love is storytelling and the moment I figured that out, I realised I was a writer not an actor (strangely, the head tutor at drama school spent a large amount of his time telling me this!)

In a weird way, I’m glad I got really sick at the time I did. I *might* have had a successful acting career if I hadn’t. But I would have been seriously unhappy doing it. Most of what I remember from my acting days is feeling self-conscious (largely because the tutors kept telling me I was fat!) anxious, and not good enough. As a writer, I’ve seen myself improve. I’ve seen myself succeed. And I’ve never once had a pen tell me I was fat :-P

My point is, when you get sick sometimes your goals have to change, but the essence of them doesn’t. It doesn’t mean you can’t be an actor, if that is what you want. It just happened that for me, it turned out it wasn’t what I really wanted.

Now for the shameless self-promotion:

I’m now a published author!

If you have an ipad and a child (well... the child isn't really necessary) I think you should download this free app and buy some picture books, including "Aunt Kelly's Dog" and "Jenny No-Kicker's" written by me and illustrated by Ian Garmonsway. I will love you forever if you do :-)

Little Miss Autoimmune

What not to say

This is a blog post I’ve been wanting to write for a while but I’ve kept delaying. I’m currently procrastinating doing a number of other things, so thought now might be a good time.

You may have seen some of the “what not to say” posts. These crop up from time to time on different sites: “10 things not to say to someone with RA,” “Things not to say to someone with IBS” etc.

 
There’s one thing I’d really like to tell people not to say. Well, actually two things, but they’re similar.

1) I have a high pain threshold

2) Well, I never get sick

Now before anyone gets offended, I don’t mean if you’re talking about yourself. It’s absolutely fine with me if, while you’re telling a story about your broken leg, or the time your liver exploded, or some other painful situation, you feel the need to concluded with: “but I coped fine, because I have a high pain threshold.” Sure. If your liver exploded then feel free to tell me about your high pain threshold – I have no problem with this. Except... I would have a little bit of trouble believing that you were still alive post liver-explosion, so I would probably have to conclude you were lying.

My issue, is when “I have a high pain threshold” is considered an appropriate response to “I have autoimmune arthritis” or “I have a chronic pain condition.” Especially when it is said with the air of this being an achievement. A high pain threshold is NOT something you have achieved any more than having a head is an achievement. It’s just something that is.

To be fair, it’s usually preceded by “Oh, well I’m lucky, I have a high pain threshold.” Even so, this is not an appropriate response at this time.To me, this comment is equivalent to if you met someone who was an amputee and said “Well, I’m lucky, I have two legs.” It is not relevant. It is not helpful and it’s insensitive.

My issue with the second comment is similar. If you are just for some reason bragging about your lack of sickness, that’s fine. Perhaps you are recounting the time you were exposed to Small Pox, Ebola and Measles all in one day, and yet still didn’t get sick? In this case, by all means tell me about how you’re lucky to never get sick. If I have just told you about how I had to take time off work because of______ illness, perhaps not the best time to tell me about your perfect health.

Again, with this one I object to it being touted as an achievement. If you eat well, exercise regularly, meditate and don’t smoke, drink or do drugs – then you may consider being healthy an achievement. Unfortunately, I most often hear this comment from smokers who I know have bad eating habits, and don’t exercise regularly. I’m sorry, but the minute those words come out of your mouth Schadenfreude takes over and I want you to get a cold* because you’re getting all high and mighty over being well when you’ve done nothing to deserve it.

*I only want you to get a cold though – nothing more serious because I’m not a horrible person, I promise.

The other thing I object to with “I never get sick” is it is often expressed as if it is a piece of advice. As in “Oh, you had to take time off work because you were sick? Well, you see what I do is I just don’t get sick – revolutionary, I know.” 

Again, you are lucky to not get sick. And by the very nature of luck, it is uncontrollable.

I don’t say any of these things to people who make these comments. In fact, I usually say nothing at all – just take a deep breath and wait until the subject is changed. I’m writing about them here though, because if you’re reading this, I hope you’ll stop and think before you respond either of these things.

 
People who have chronic pain don’t have a problem with it because they have low pain thresholds – they’re just in a tremendous amount of pain. Before I was diagnosed with Psoriatic Arthritis I was told by medical professionals that I have a high pain threshold – it doesn’t make a difference. I’m still in a sh**load of pain now.

People who have autoimmune disorders are often on immunosuppressant drugs. Their immune systems are squashed down, making them susceptible to every bug and germ out there. They have to work hard just to not get sick often.

 
I think sometimes people say these things, because they don’t know what to say. It’s hard to know what to say when someone is sick, particularly when they are always sick. My feeling is, if you don’t know what to say, think about what you want to convey to that person. Do you want them to feel heard? Do you want to let them know you are there for them? When you know that, I think the words will probably come and my guess is, they won’t mention pain thresholds.

Thanks for reading

Little Miss Autoimmune.

My onset story

This is me, at age nine, just before my onset of Psoriasis and Psoriatic Arthritis.

When I was nine, my parents took me and my sister to South Africa – most of my dad’s family were living there at the time. Because some of the areas we were travelling to had a high risk of malaria, we had to be on anti-malarial drugs as a precaution.

We didn’t know this at the time – and chances are even if we had it wouldn’t have changed anything – but certain anti-malarial drugs can bring out Psoriasis in people who have the gene, but no current symptoms. I say knowing this probably wouldn’t have changed anything because my mother and I didn’t know that we had the Psoriasis gene. Even if we had – the risk of malaria probably would have outweighed the risk of what we initially thought was a minor skin complaint.

When we returned to New Zealand, I fell over and grazed my leg. That in itself wasn’t anything major – except that the wound never healed. Six months later, the area that had been cut had turned into a raised scaly patch. I soon found that any broken skin did the same. Being a reasonable active (and clumsy) nine year old, I was soon covered in similar patches. This was the onset of Psoriasis.

A few months later, I developed excruciating pain in my right thumb joint. As I was at school and spending a lot of time writing, it was assumed I’d developed RSI. After a few weeks of resting it, the pain got a little better. It never quite resolved though.

At the beginning of the next school year, the pain came back worse than ever and this time it wasn’t just in my thumb. All of the joints in my hands and feet were affected, and several of my larger joints were too.

I believe the anti-malarial drugs were the trigger for my Psoriasis and Psoriatic Arthritis. Ironically, these same drugs can be used to successfully treat other types of autoimmune arthritis.

As you can see from the photo, I wasn’t overweight at the time of my onset. Full disclosure – at times during my childhood I was overweight. When I was ten/eleven, I put on a lot of weight after large amounts of steroids for my asthma (those same steroids probably put my arthritis into remission, meaning my early teen years were relatively arthritis-free and I wasn’t diagnosed until age 19.)

I mention this because there has been a lot of debate recently about whether obesity causes autoimmune arthritis. My personal feeling is no, it doesn’t CAUSE autoimmune arthritis. In some cases, it could possibly be a TRIGGER or one of several triggers, but that is not the same thing as it being a CAUSE. Just as, no-one would say anti-malarial drugs cause Psoriatic Arthritis – there would be a lot of unnecessary deaths from malaria if that was the case – but for me, with my particular genetics, the anti-malarials probably were a trigger.

My autoimmune arthritis numbers are 32-9-27.

Today is World Arthritis day. If you’d like to, please feel free to share you onset story in the comments, or comment on your thoughts about the weight-debate.

Or you can post “Your numbers”

“Your numbers” are a combination of three numbers we all have:
#of (approximate) weight at time of onset - #of age at onset - #of (approximate or what everyone thinks you are) current age. So mine – I was approximately 32kilos at age of onset, I was 9years old, and I’m 27 now. Weight can be measured in any system used in the country of residence; it’s the formula that is most important. All of us have those three numbers.

If you have facebook or twitter, please post or tweet your numbers – but keep it secret! Don’t publically explain what these numbers are until the end of the day.

You can follow this awareness event Here

Thanks for reading

Little Miss Autoimmune

Happiness is...

So, for a while I've been posting my articles for work up here. This one doesn't have all that much to do with autoimmune disorders, but is more about depression and anxiety, but since these often go hand in hand with physical illness, I thought I'd still post it.

Recently I was having a conversation with my friend about what constitutes a hobby, and on a more abstract level – what makes us happy.

We came to the conclusion that there were many things that we enjoy, that don’t quite constitute “hobbies” but that didn’t mean they made us any less happy. For example, I really like reading children’s books, painting my nails and drawing pictures with felt pens. I think most people would think I was quite strange if I called those things hobbies, but having things like these, that I find both relaxing and enjoyable, is essential to my well being.

A few years ago, when I was really unwell, I watched the film ‘Labyrinth’ just about every day. I think most people thought I was a bit weird for doing this, but I really felt it helped my emotional recovery. For a lot of the time, I felt too sick to get out of bed but if I wanted to watch the film – which I did – I had to at least make it to the living room.

If you’ve never seen that film, or if you haven’t seen it since you were a child, I would really recommend rewatching it. In particular the last scenes.

I’m guessing most people reading this won’t know the film word for word by heart, so I’ll summarise here. Spoiler alert – if you haven’t seen the film and don’t want me to ruin the end for you STOP READING NOW :-)

In the last scenes there are some lines which as a child I completely missed the significance of. Now as an adult, I see them not only as significant in the film, but as a comment on life in general.

“You have cowered before me. I was frightening.” The dialogue then goes on to explain that Jareth, the main character is living up to her expectations – therefore, she wasn’t cowering because he was frightening: he was frightening, because she was cowering. I realised this line, “You have cowered before me. I was frightening” could easily be talking about anxiety, depression or any number of other things associated with mental illness. Often a situation does not become frightening until we have anxiety about it – not that we are anxious because of the situation. We are anxious because we are anxious in effect. Similarly, I know if I’m feeling sad I will be upset by situations that I wouldn’t normally be. Essentially, I’m sad because... I’m sad. Not because of whatever is happening.
So this is all very well, but it doesn’t change the fact that the end result is feeling anxious or sad whatever the cause.

I think one of the final lines in the film addresses this: “You have no power over me.” Sarah, the protagonist of the film, realises that even though Jareth is frightening, he is only living up to her expectations. In reality he has no power over her.

The other night, I couldn’t sleep, and since I only get two TV channels, my choice of viewing was motorsport racing, or the Grudge 3 – neither of which is quite my cup tea. So – on went Labyrinth. I could have sat there, feeling sad and lonely, unable to sleep. Instead, I chose to do something that made me happy. I still couldn’t sleep... but that had no power of me.

Thanks for reading, 

Little Miss Autoimmune

I am Proud of my Hands

I have painted pictures with these hands
I have written a novel
I have comforted friends
I have comforted strangers
I have learnt sign language
I have made a patchwork quilt
I have made clothes
I have mended clothes
I have bandaged knees
my own and others
I have made meals
and brilliant brownies.

Last night at work, we had to take a team photo – little bit difficult since our team is anonymous – so we were taking a team photo of our hands.

Yeah - so that bit in the picture above, where my little finger looks like it's broken/dislocated? That's my hand relaxed!

My manager had told me beforehand what we were doing, so I had come prepared with a pair of gloves. I was kind of surprised to discover that my whole team were all very self conscious about their hands – I’d always thought it was just me. I regularly get rashes on my knuckles which cause them to blister and bleed and with each flare, my joints twist a little more.

At the moment, I don’t have this but in the past I have had swelling in my tendon sheaths, which causes lumps the size of eggs to appear on the back of my hands.

So, I decided to hide all this by wearing gloves in the photo.

Something else interesting happened at that meeting - we were asked to think of something we were going to do in the next week to look after ourselves. I struggled to think of anything positive because I was feeling sick and down and, quite frankly, I was behaving like a sulky child (sorry guys!)

Later that night, as I was staring at my hands obsessively, I realised I’ve actually done some pretty cool things with my hands. Feeling ashamed of them is really quite self-indulgent and just silliness. While I'm sitting there staring at my hands obsessively, I'm not doing anything remotely useful or cool - I barely doing anything.

So, the thing I am going to do to take care of myself this week is be proud of my hands, and all the things they’ve done.

I will no longer being playing the “hide my hands from view” game – though since my people drawing skills are a bit rubbish I will still be doing this with any art work.

:-) Little Miss Autoimmune

The online autoimmune arthritis art show and auction

The art auction is this weekend! You can bid on items in live auction or buy prints/cards from the Fine Art America gallery. All pieces donated by either patients with autoimmune arthritis, or members of their whanau. Read more below:

The International Autoimmune Arthritis Movement (IAAM)started as The 'Buckle Me Up" Movement in 2009, created as a way to raise awareness by rebranding the face of 'arthritis' with young and trendy jewelry (original “buckle bracelet” shown on left). In just a month, the word of this rebranding went International and the need for global awareness became apparent. On May 7th, 2011 (ironically also the 40th birthday of the Founder and CEO) notification was received that, what is now called the International Autoimmune Arthritis Movement, official 501c3 nonprofit status was granted. This weekend marks their first fundraiser, using donations to fund the start up costs necessary to get this nonprofit up and running!Continue reading on Examiner.com The online autoimmune arthritis art show & auction - National Autoimmune Arthritis Examiner.com http://www.examiner.com/autoimmune-arthritis-in-national/the-online-autoimmune-arthritis-art-show-auction#ixzz1SDSOhqh4

Clarity

Hi there,

I decided I'm going to be lazy again, and just post the article I wrote for work up here, instead of writing a new post. Saves on coming up with extra inspiration!

When I saw the topic for this month’s Links* (clarity,) I was trying to think about what helps me to think clearly. I struggled to come up with an answer to that question, other than the obvious things – time, space, someone to talk things through with.

What I did keep coming back to me were the things that make me not think clearly, and the fact that when those things are influencing me – I just can’t see it.

My sister and I were talking recently about our teenage years. She was telling me about how when she was a teenager, our parents (and other adults) would say things like “I understand this is a very confusing time for you,” or “I understand you’re feeling very emotional right now.” Both of our reactions to these kinds of statements were pretty similar “I’m not confused! I’m not emotional!”
It’s only looking back that now, my sister and I could say: “Wow, we were really confused and emotional!”

My point is, when I’m in the middle of a high stress time, it doesn’t matter how clear headed the people around me are: I know I’m just not going being able to see it myself until I come out of it.

At the end of last year, I was very physically sick. Looking back, I can see that my thinking and ability to make decisions was very influenced by how I was feeling. I can also see that if someone had told me that at the time, I wouldn’t have been able to hear it. Now, while I’m well, I know that even if I get sick again, it will be okay. It will be horrible, and uncomfortable and unpleasant while I’m sick, but that eventually the flare will end and I’ll be all right again.
Ask me if I know that in the middle of the flare and my answer will probably be: “I’m not confused! I’m not emotional!” (or words to that effect.)

That’s why I like to write letters to myself. The clear-headed me can remind the non-clear-headed me, that I’ve felt like this before and that it’s not going to last forever. A while ago when I came out of a bad episode of nausea I wrote a list of nausea Dos and Don’ts for myself. (see the list here )This really helped me the next time I felt sick, because I knew that they came from me. Not from someone outside, who just thought they knew how I was feeling.

I probably won’t ever feel the same way I did when I was a teenager again, but I wrote something for 15 year old me anyway – just because I wished I could.

Letter to my 15 year old self

I won’t tell you
that it will get better.
You won’t believe me
and that disbelief
will make you sad.

I won’t tell you
that you’re not as fat
as you imagine.
You will only hear
what you want to
and will believe I’m saying
“You are fat, just not as fat
as you imagine.”
Someday, you will learn
to hear what people
are really saying

I won’t tell you
to try and focus
on the good, to let
the bad stuff go.
That bad stuff
will shape you life
in ways you can’t
understand yet.
Some of it will
lead you down paths
you don’t like
but those paths are
just that.
They are not the destination.

I will tell you
that you’re doing okay.
You probably won’t believe
that either
but I still want
to say it.**

:-) Little Miss Autoimmune


* 'Links' is the name of our work newsletter
** I wrote this poem as part of a thirty day poetry challenge. You can check out the rest of the poems here

IAAM Art Auction

Hi again.

I posted earlier about the IAAM Art Auction - well here's the poster :-) (please excuse my technologically challengedness, if it is a strange size or anything like that!)

I'm donating a couple of pieces - I was working on one last night while puppy-sitting my sister's hyperactive chihuahua. He was convinced that I was actually making some very-tasty, extra-special food, that I wasn't sharing, and not just mixing paint!

Anyway, I'll post again once the auction is all go

:-) Little Miss Autoimmune

IAAM News

I’ve blogged before about the wonderful work IAAM (Buckle Me Up) are doing in raising awareness for autoimmune forms of arthritis. Well, as of 7th May IAAM is officially the first 501c3 nonprofit organisation, solely benefiting autoimmune arthritis!

You can check out IAAM’s website, including new initiatives like The Awareness Hotline and Wellness pages, here:

http://www.iaamovement.org/Home_Page.php

Also, if you’re an artist (or in any way artistically inclined) and have any form of autoimmune arthritis, IAAMs first fundraiser is going to be an online art auction in July of art and crafts made by the hands of those with autoimmune arthritis. You can see more details on the home page, or email tiffany@IAAMovement.org for more information.
If you’re not so artistically inclined, but would still like to help with this fundraiser, do check out the page and maybe place a bid on some of the pieces once it’s all go.

Final plug – as IAAM are so newly a nonprofit there are a whole load of start up costs needing funding (website, email newsletter service, phone line, mailbox, advertising and PR costs, general office supplies and initial programs) and also organizational costs, such as salaries, program development and finalizing official documentation.)

If you’d like to make a direct donation (remember – they’re tax deductable! and no donation is too small) go to:

http://www.iaamovement.org/Home_Page.php

or you can mail a check to:
IAAM
646 S. Barrington Avenue, Los Angeles, CA 90049
Note: if donating with check please provide an email address where we can send your tax receipt.

Finally, you may be wondering why the picture. I was talking with my friend Mary about the online art auction. I said I would donate a piece, but I just wasn’t sure what. This wearable picture book came up (don’t worry, I won’t really be donating this!) My sister and I made this for the Wearable Arts Competition last year, and this is a picture of me and Mary wearing it. Although I have no plans to try and sell this in an auction, we decided it really was quite an apt image. Having autoimmune arthritis can feeling like you’re carrying a huge burden (a giant wearable castle perhaps?) but you don’t have to be in the castle alone. Having an organization like IAAM can help carry the load…

All right, I’ll leave you with that rather tenuous metaphor and the request that you really do check out the website and make a donation.

:-) Little Miss Autoimmune

Pacing, planning and prioritising....

I am again, sitting on the couch in my pyjamas, though this time I am actually working (and by working, I mean waiting for a call to come through.) Note: if you ring a mental health helpline, the person you speak to may very well be wearing pyjamas. It's kind of an industry thing :P

Anyway, I wrote a blog post last night, but then the internet stole it and won't give it back.... or maybe I'm just really technologically challenged. The point is, I was too tired to re-write it and in the interest of not exhausting myself, I'm just going to post an article I wrote for my work newsletter instead. It's about pacing, so I thought it was apt...


When I think of self-care, I usually think of adding things to my day: adding exercise, eating healthy foods, getting enough sleep. Recently I’ve realised self-care is just as much about saying “no” to things. Now, I’m not talking about the obvious – saying no to cigarettes, alcohol, stress etc. (although that’s a part of self-care too!) What I mean, is saying “no” to those things that suck up our time and leave us collapsed on the couch at the end of the day.

When I’m trying to explain what it’s like to live with a chronic illness, I often talk about Christine Miserandino’s “spoon theory”. The essence of this theory is that, when you live with a chronic illness, everything you do costs you a “spoon.” Under normal circumstances, a healthy person will have an almost unlimited supply of “spoons”. They don’t need to worry too much about overdoing it and running out. A person with a chronic physical or mental illness will have a limited amount of “spoons”. To make sure they still have enough energy to make dinner at the end of the day, they will need to keep an eye on how many “spoons” they use up during the day.

This is where pacing, planning and prioritising come in. I know that for me to stay healthy, I need to really think about what I include in my day. There are things that I have to do because... well, they’re just facts of life – work, study, chores, cooking. There are things I need to do for my health – exercise, physio, doctors appointments, and then there are things that I want to do – creative projects, socialising, retail therapy etc. Prioritising doesn’t mean anything that’s not 100% necessary gets chucked off the list; it just means I have to work out how I’m going to fit it in without running out of “spoons”. It might mean that I choose to meet up with friends on the days I’m not working. Or it might mean that if I’ve got a doctor’s appointment and a deadline on a writing project, the cleaning might have to wait until tomorrow. If I know I’ve got a busy day coming up, I’ll make a big meal the day before so I can have leftovers for dinner rather than having to cook after a long day.

Learning to pace myself has been a hard journey. Sometimes I’ll wake up feeling like I have an unlimited number of “spoons” only to get halfway through the day and realise I just don’t have the energy to get everything done. Then there are the days where unexpected things happen, and my energy is taken up with things I hadn’t planned for. Either way, the next day I have to come back to it: pacing, planning and prioritising. It’s a slow journey, but in the end, it will all get done. Just maybe not as quickly as I thought.

Check out spoon theory at:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Little Miss Autoimmune :-)

Shoulds don't work for me...

There's a part of me that feels silly, sitting down to write a blog post at this stage. This is only partly due to the fact that as I write, I'm sitting on my couch wearing pyjamas - that can only be described as reminisant of the ones Bridget Jones wears during her All by Myself meltdown - fluffy pink bed socks and an over-sized dressing gown. See, this doesn't embarrass me. Despite the fact that I'm still in my twenties, this is pretty much an average Saturday night for me. After years of thinking "I should be doing what other people my age are doing" or more realistically "I should pretend that I want to be doing what other people my age are doing" I have come to the realisation that "shoulds" just don't work for me. I'm happy sitting on my couch in cozy clothes on a Saturday night, and if I'm happy, why "should" I be doing something else.

But I digress...

The reason I feel silly writing a blog post at this stage, is that it has been *gulp* five months since I posted anything. I gave up even pretending I was going to post soon, because I could tell it just wasn't going to happen.

When I last wrote, I was incredibly sick. Both the joint symptoms and systemic symptoms of my arthritis were out of control... things got pretty hairy there for a while. I was having trouble... well doing anything really. Even getting up to go to the bathroom was a huge struggle, especially as I was having frequent falls. Simple tasks had become incredibly difficult and solid food had become a distant memory as the pain and stiffness in my jaw made chewing near impossible (eating icecream and soup for months on end, is not as fun as it might seem!)
Added to this, I'm prone to periods of insomnia and the constant pain was making falling/staying asleep hard to say the least. Crazy Helen was starting to emerge...

But, it's not all bad news. In fact, what happened next was about the best news I could have hoped for. I'm currently in a partial theraputic remission*

A stint on pain killers helped with the pain levels and sleep problems (thus saving my sanity!) but they couldn't do much to help the systemic symptoms. Among other symptoms, I had to have several weeks off work as the inflammation in my voice made shifts on the phone impossible (no-one ringing a helpline in crisis really wants to talk to creepy-croaky voice lady) and I had near constant double vision.

Fortuately my nurse managed to get me switched from Humira injections to Enbrel. Up until this point, I'd been told there were no more medical options for me. My doctor (and my nurse too, really) believed my condition was drug-resistant. Therefore switching me was going to have no effect. My nurse insisted on at least trying (she told me later that after arguing with my doctor he ended up saying "fine, do what you want, but it's not going to work.")

12 hours after the first Enbrel injection I was in a partial remission - at which point my nurse became pretty much my favourite person in the world! For a year before this, I hadn't been able to leave the house without Molly Stick, but the day after the injection I walked down the stairs unaided. Of course, my dad wouldn't actually let me go anywhere without Molly. I was all for going for a run that first morning, but he wasn't so keen on having to rescue me, if I collapsed!

It became clear that I wasn't in a full remission - I still had symptoms, though for the most part they were pretty minor. Every so often I'd wake with full on swelling and pain, but mostly they were at a manageble level.

Now... this post is getting a bit long, so I will pick up the story from here in my next post... (in the next installment I go to pain clinic and almost get murdered by an ipod!)

I'll just skip to my point. Part of the reason I've left it so long between posts is the number of shoulds piling up in my brain - "I should have posted already" "I should write my post tonight, despite the fact that I'm too tired" "I should have something more interesting to say" "I should be able to write this more coherantly" "I should do the housework/washing/cooking before I post" "I should write something BRILLIANT to make up for the long absence."

Well, I'm done with shoulds. I refuse to be paralysed by shoulds.

So there it is - I'm a Bridget Jones look-a-like, slack blogger... and I'm proud of it.

Thanks for reading

Little Miss Autoimmune :-)

*Not sure if everyone will understand the word "remission" in this context. I'll include a definition in my next post.