Big Orange Gloves

I decided a while back I would make Monday nights my blog posting day. It's worked pretty well, until tonight. I've just realised it's 9.30pm and I haven't even thought about a topic.

So I'm going to fall back on something that's been going around the New Zealand arthritis community this week. Having arthritis does not feel like wearing big orange gloves!

- For my non-New Zealand readers, this last week has been Arthritis New Zealand's appeal week. Arthritis New Zealand is a wonderful service. They've helped me so much with emotional and practical support. It's been really great over the past few years knowing that if I need help with anything, from advice on appropriate exercise programmes to getting subsidised taxi vouchers, I have someone I can call.

Unfortunately, the appeal adverts have not been so helpful.

They feature New Zealand celebrities trying to do everyday tasks while wearing big orange gloves. Everyone I've talked to agrees, arthritis does not feel like wearing big orange gloves.

For one thing, these ads have absolutely no mention of pain. Personally, I have almost full function of my hands, but that doesn't mean that they are not extremely painful. Yes, arthritis does sometimes make my hands fumbly. There are times when I can't do up zips or find using a knife and fork difficult but this is a minor irritation compared to the long list of other symptoms and difficulties that come with the disease. For me, things like, not being able to put my socks on myself, not being able to pick up things if I drop them, not being able to walk/get up and down from chairs un-aided would be more relevant. Then of course there is the pain and the things that go along with constantly being in pain. Lack of sleep, inability to concentrate, general exhaustion and floods of emotion.

Too many people already think that arthritis is just something you get in your hands. I do give the campaign credit for using younger celebrities. This at least hints at the fact that arthritis is not only a condition you get as you age.

I don't know if it's possible for a 30second ad to really explain what it is like to have arthritis. Even as I read over this post I'm thinking I haven't really captured it. For people who haven't experience long-term pain, it's probably quite difficult to imagine what it's like. I guess what I'd really like to see in an arthritis campaign is people with arthritis telling their stories. Maybe next year, Arthritis New Zealand can do some ads similar to the Like Minds ads (people with experience of mental illness telling their stories.) I know those ads have helped with people's understanding of mental illness. It's time for people's understanding of arthritis to change too.

Little Miss Autoimmune

Blobfish

So this week has not been a good one.

I had a really bad flare. I've had many psoriatic arthritis flares and many of them have been pretty horrible - LOTS of pain, not being able to walk, difficulty sleeping and even the simplest tasks becoming impossible. This was something different.

I spent most of the week on the couch. The fatigue hit me so bad. My muscles felt really heavy and I was so exhausted I had trouble breathing, let alone moving. My skin hurt so much that even the sensation of my clothes touching my skin was like being burnt and the muscle spasms, which are normally not a big deal, were so violent I nearly threw my laptop across the room when my leg jerked. Added to that, I developed a stutter for a couple of days - this was pretty difficult to deal with especially since I work on a mental health help line and I was rostered on that day. Needless to say I had to take some sick leave.

I wanted to come up with an analogy of what this flare felt like. The best I could do was: It's like running an all night marathon, while you have the flu and are really sunburnt (I think there should be something in there about being repeatedly punched too, but I couldn't fit it in without the desciption becoming rather rambly.)

Anyway, brain fog meant that I had some pretty interesting conversations with people. I either forgot what I was saying halfway through a sentence, or seemed to vocalise every thought that came into my head. On a good day, my conversations are kind of random, as the things I find most interesting are pretty weird, but this was a whole new level as I was verbalising all the weird things I think about as well.

Anyway, several times over the weekend I found myself describing a blobfish - I actually can't remember why, but it seemed really important at the time. My description went something like this "It's like a bowl of pudding - like if you put gelatin in milk." You'll see from the picture this is actually reasonably accurate.

What I realised later is once you've established what a blobfish looks like (preferably with a picture, not the pudding description) this is the perfect description of what a flare feels like. A flare feels like a blobfish looks.

So in future, if I'm having a flare and someone wants to know what it feels like, I will not start a list of symptoms, I will say 'go google a blobfish.' Then I will probably have to explain that this is not a more creative way of saying 'go get f*#ked' - 'cause I just realised that's kind of what it sounds like. Hmm... I think I'll have to work on the wording, but the idea is there.

Little Miss Autoimmune

Can I go to work flowchart

So the other day my supervisor asked me why I was at work when I wasn't well. I explained that when you have a chronic illness you have a new baseline of 'well' and 'not well.'

My thought process over 'can I go to work' goes something like this.

1) Am I in pain?
No - I haven't not been in pain for about 16 years, so my first point of call would be to check whether I have a pulse. If I don't and I'm dead, probably don't go to work. If I do, I'm still not in pain, and have established that I'm not paralysed or dreaming - don't go to work. A miracle has occurred - celebrate.
Yes - go to question 2

2) Is the pain so bad that I can't get out of bed/fall over as soon as I get out of bed?
Yes - don't go to work
No - go to question 3

3) Is the pain so bad that I can't walk/get stuck in a chair as soon as I sit down?
Yes - don't go to work
No - go to question 4

4) Am I so depressed about the pain that I am unable to concentrate/am constantly bursting into tears? ie am I going to be a distraction to others at work?
Yes - decide whether I can get this under control i.e. will a nice relaxing couple of hours, perhaps filled with chocolate, a walk and a bath possibly make me feel better? If no, don't go to work, if yes, try these things then reassess.
No - go to question 5

5) Am I any kind of contagious sick?
Yes - don't go to work, my work mates will not appreciate me spreading my bugs.
No - go to question 6

6) Am I some kind of sick that is not pain and not contagious? ie nauseous from medication, ulcers, dizzyness or general out of sorts-ness.
Yes - Is this a long term or short term thing? If short term, it's probably OK to miss a couple of days work, if long term, I'm going to at some point have to go to work with it. Decide whether this will be a distraction to other people/will other people end up having to look after me - if so don't go to work.
No - Go to work

This thought process sometimes changes when things I haven't thought of pop up and I have to factor them in to my decision making process and of course, this is only my physical wellness can I go to work flowchart. I have a whole other one for my mental health.

So basically, it's not as simple as 'am I well/am I sick?' There are so many degrees that sometimes I don't judge it right. Sometimes I will go to work and feel absolutely awful and have to go home. Other times I will stay home and later realise, maybe I would have been OK at work.

I'm really lucky that I have a supportive work who understand this.

The important thing is, only I can make this decision. The best way is to trust myself, and trust my instincts.

Little Miss Autoimmune

Meltdown Spaces

So, I have an idea for a new kind of business. I used the term business pretty loosely as I have no clue how you could actually make money from this idea, but I'm sure that can all be worked out later.

Have you ever noticed that when you're having a really bad day, and you get to absolute meltdown point, there is nowhere you can go and have your meltdown other your own home? I discovered this the other day. Things were not going well, I was in a lot of pain, really tired and sick and I had like a million (read three) things to do. All I really wanted to do was go home, go to bed and eat masses of chocolate. Instead I found myself limping down Courtenay Place on my way to get a blood test. On a good day I'm not that keen on blood tests so on a bad day it just put me over the edge.

I burst into tears on my way out of the building. There was no where I could go to cry in private other than Reading Courtenay bathrooms, which are by no means an ideal meltdown space. The stalls are pretty claustrophobia, and since there were other people in the bathroom, I was forced to have a very quiet meltdown, which is just not as cathartic as a noisy one.

I've heard from other people that they've had similar experinces, having meltdowns in banks, the middle of the street etc. They've all said they would all like a nice, comfortable, private place to go and cry where no one would judge you, or try to make you feel better (preferably with copious amounts of chocolate and tissues available.)

So this is my idea: I set up a chain of "Meltdown Spaces." I'm thinking I may petition John Key for some funding. He's clearly overlooked this vitial need in our community.

If I can figure out how to do it, I'm going to attach a video of some people who clearly needed a Meltdown Space. Also, the song on this video is by Rob Thomas who's wife Marisol has an autoimmune disorder. He wrote the songs "Her Diamonds" and "Ever the Same" about her experiences with it... OK, so it seems I don't know how to attach the actual video, but here's the link to it on YouTube.

http://www.youtube.com/watch?v=crKS_fMTRJo

It's my absolute favourite video.

Little Miss Autoimmune

Laughter is the best Medicine

I am not fine. I am flaring really badly and I feel awful. For the last few days I’ve been sleeping pretty much ‘round the clock, sometimes on the floor because it felt more comfortable than my bed. I’m back to the stage where I’m having falls ‘cause the joints in my legs won’t support me so in general, I am not fine!

Rather than going on about how not fine I am, I thought I’d follow my friend Mary’s suggestion and do a post of random stuff that has very little to do with autoimmune disorders and loosely connect it under the guise of ‘laughter is the best medicine.’

Mainly this is just going to be some lists of things that I think are funny. You may or may not find them funny also.

Weirdest Compliments I’ve Received

“You have eyes the colour of blue M&M’s”
From: A girl at school.
My reaction: I think I laughed at the time. Now every time I look at M&M’s I think of eyeballs.

“I like your necklace and I like your bust.”
From: A friend of a friend who I was having dinner with.
My reaction: At first I thought I’d misheard her, then I thought maybe it was a lost in translation situation as English was her second language, but no, that is what she meant. She went on to tell me why she liked my bust and that she wished she had a bust like mine. At that point I wished I had worn a less revealing top. I also think it’s funny that she tacked “I like your necklace” on the front of that.

“You look like the Virgin Mary”
From: Random drunk guy.
My reaction: To be fair, I was handing out promotional stuff for a Fringe play that had a picture of the Virgin Mary on it and he was really drunk, so I suppose it wasn’t that weird…

“I like your dancer’s calf muscles.”
From: Guy in my class at drama school
My reaction: What strikes me as weirdest about this, is I can’t remember why he was holding my calf muscle in the first place. I suspect it was some weird drama game that I’ve blocked out. Anyway, he decided I had the calf muscles of a dancer. It’s a pity that’s about all I’ve got of a dancer in me.

Misheard Song Lyrics

Song: Matchbox 20, ‘Disease’
Real lyric: ‘All my life, oh, was magic’
What I hear: ‘All my life the phone was magic’
Thoughts: I made up this whole story in my head about how he’d always loved talking on the phone to this girl until they broke up and had lots of arguments over it. I thought it was some kind of phone phobia reference. Clearly I have an active imagination.

Song: Eskimo Joe, ‘Black fingernails, red wine.’
Real lyric: ‘All of us stand and point our fingers’
What I hear: ‘I don’t understand the point of fingers.’
Thoughts: It amuses me greatly that I thought this made sense. Personally I think my version is more interesting.

Song: Bush, ‘Little things’
Real lyric: ‘It’s the little things that kill, tearing at my brain again.’
What I hear: ‘It’s the little pink pill, tearing at my brain again.’
Thoughts: I really thought this song was about antidepressants. It kind of disappoints me that it’s not.

Song: Alanis Morisette, ‘Princes Familiar’
Real lyric: ‘Please be philosophical’
What I hear: ‘Please be ever so fickle’
Song: Alanis Morisette, ‘8 easy steps.’
Real lyric: ‘I’ll show you how leadership looks, when taught by the best.’
What I hear: ‘I’ll show you how widdershins looks when taught by the best.’
Thoughts: I put these both down to the fact that Alanis takes forever to get a syllable out. It did intrigue me as to how you could teach widdershins as I’m pretty sure it means anticlockwise.

Weirdest thing I've found I’d written in my beside the bed notebook

"He smiled, exposing wisdom and teeth."
I’m pretty sure I thought that was brilliant at 3 in the morning. Not so much when I read it again when I woke up.

OK, so that one is not really a list but I thought this post was getting a bit long.

Check out Mary’s blog for her lists:

http://jumpinginpuddles89.blogspot.com/

Yay! Shameless friend promotion!

Anyway, hopefully I'll be inspired to write something more autoimmune related soon.

Little Miss Autoimmune

Interpreting the "I'm fine's"

I will always say I’m fine when asked. I can be bawling my eyes out, half unconscious in hospital or unable to breathe, but if you ask me how I am I will answer with the traditional “I’m fine, thank you. How are you?”
My supervisor at work has taken to having conversations with me that go something like this. Her – How are you? Me- I’m fine, thanks. Her – Yes, but how are you really?
I find I am not alone in this. Several guys have asked me why girls do that (though I’m pretty sure guys do it too.) So much so, that I included this conversation in my novel:

“You OK?” He sounds uncomfortable. His voice comes out with a laugh in it.
I stare in the other direction. “I’m fine.”
He scoffs. “Why do girls do that?” He pauses. I’m pretty sure he wants me to ask ‘what’ but I don’t bite. When I don’t say anything he sits down next to me.
“I’m fine, I’m fine, really I’m fine.” He mimics a high-pitched voice then laughs at his own joke.

It always seemed strange to me that people couldn’t figure out why I’m saying ‘I’m fine’ when I’m not. Then I thought about the myriad of reasons behind my ‘I’m fine’ and realised their problem.
I can’t answer the question why do girls do that, but I can explain some of the things I’m thinking when I do it.

1) I actually am fine. It confuses me greatly that you keep asking. Do you think I’m lying?
2) I’m mostly fine, but I’m hungry/tired/nervous/cold/bored/headachy. This may look like I’m not fine but it’s not really an issue
3) I mistook your genuine inquiry as to how I am for the customary greeting so I’m replying with the customary “I’m fine, thank you. How are you?”
4) I’m really not fine but I don’t want to talk about it. This is not your fault. You don’t need to do anything
5) I’m not fine, I do want to talk about it, but I don’t think you really want to know/don’t think you can deal with what’s going on for me so I’m just going to say I’m fine
6) I’m in a lot of pain. Talking about the fact that I’m in a lot of pain will make the pain worse so I’m just going to say I’m fine.
7) See number 5 – replace “in a lot of pain” with “nauseated” and replace “the pain worse” with “me throw up… possibly on you.”
8) I’m NOT fine. I have PMS. I am angry at everything and everyone right now, especially you because you keep asking me if I’m fine. I do not believe at this moment in time that my anger if irrational and if you keep asking me I may hit you (this one is recognisable by the murderous rage in my eyes.) Again, this is not your fault but I may not realise this right now. Fell free to avoid me until I’m less hormonal.
9) I’m angry. Not because I have PMS but because you have done something. Because I have issues with conflict I don’t want to say anything so I’m saying I’m fine.
10) I’m tired, sick and in a lot of pain but I feel I’ve told you that too many times over the last day/week/year/lifetime. I’ve decided to just say I’m fine so I don’t feel like I’m burdening you. Or, I think that I will feel better if I pretend I’m fine even though I’m not (go positive thinking!)
11) I’m very sleep deprived/low on blood sugar. I’m starting to think maybe you are a sea monster in disguise who will eat me if I don’t say I’m fine (OK, that one has never happened, but I do get a bit out of it when I haven’t slept/eaten so I may very well think I’m fine even though I’m clearly not.)
12) The reason I’m not fine is so incredibly stupid/embarrassing I can’t possibly tell you without you loosing all respect for me e.g. I’m crying because that pigeon over there looks sad.
13) I am fine, I’m just walking very slowly/can’t eat anything ‘cause I allergic to everything here/have hay fever or this is the first time you’ve seen me walking with a stick. These things may look to you like I’m not fine, but this is a daily thing for me. Thanks for your concern but you really don’t need to worry.

There are many more reasons but this post has gone on a bit long. Hopefully this will help with some of the “I’m fine” confusion, but probably not. They all look pretty much the same and most of the time I may not know myself which one I am.

Little Miss Autoimmune

Dramas (and a whole load of thank yous)

It's ranting time again, this time about myself not about anyone else. I've had a dramatic couple of weeks with my health. At one point I was convinced I was dying of fibromyalgia (which was interesting, since fibromyalgia isn't a fatal condition) at another I was in hospital having an allergic reaction, and to top it off I had an incredibly classy moment and threw up in the kitchen sink.

All in all, not the best couple of weeks.

As you may have guessed, I was rather sleep deprived when I thought I was dying. I had incredibly bad nausea from my medication so couldn't eat, sleep or at times form a coherant sentence (thanks to all the Warmliners and Writing Group for putting up with me) and the pain was really bad so I was loosing the plot.
I got to the point where I thought taking an entire pack of panadol would be a good idea. I wasn't suicidal, I'd just got to the point where I couldn't make sense of what I was doing. When two panadol didn't make the pain go away I thought maybe the whole pack would (thanks to Kim for talking me out of that one.)

I saw my GP a couple of days later and she and my rheumy nurse were really good. They got me switched to the injection MTX instead of the tablet, which has none of the nausea side effects. Drawing up and injecting myself wasn't anywhere near as hard as I thought it was going to be apart from my hands shaking on the first one. Unfortunately....

I woke up a couple of days after the first injection covered in hives and with my lips swollen to about four times their normal size. I wasn't terribly worried by this at first (in hindsight, I probably should have been) until Healthline told me to go to the hospital immediately and told me that I may stop breathing, so someone else needed to drive me to the hospital (thanks to Dad for the early morning run to A&E.) Fortunately, I didn't stop breathing, and the doctors told me it was unlikely to be the injection 'causing the reaction as it seemed to be a contact allergy. This was a relief for me as I'd noticed my arthritis had improved with the switch. I'd actually even run up the stairs in my house without holding on to the handrail which a few weeks ago would have been impossible (I did, of course, trip and face plant into the stairs, but let's not focus on that part...)

So, for the next week I woke up every morning with hives and looking like I'd been punched repeatedly in the face. I went through a trial and error process, trying to find out what I was allergic to. It seemed to have something to do with sleeping as it only happened when I woke in the morning. Finally, I realised what it must be. My Dad has many allergies and food intollerances. I'd inherited all of them except for his allergy to rubber... until now. Everynight I had a hot water bottle and everynight I was reacting to it. Somehow, the injection must have triggered this allergy. I'm kind of annoyed I now can't have a hot water bottle and that all my clothes with elastic in them are going to have to go, but it's nice to have an answer.

Finally, the throwing up in the sink... Not really sure what 'caused this. It's pretty unusually for me as I don't normally throw up (I'm not exaggerating, I didn't throw up for 14 years before this, even when I had food poisoning in that time.) I think it was just a combination of generally not being very well and some rather gross gluten free bread. Oh, yes, and for the record, it was the waste disposal part of the sink and I did disinfect it afterwards.

I'm hoping this is the end of the health dramas and that the next few weeks will be a lot calmer. Thanks to everyone who supported me through this.

:-) Little Miss Autoimmune

Buckle Me Up News

Just a quick post to let you know about a couple of cool things happening with Buckle Me Up, International Autoimnnue Arthritis Movement.

1) This month, to coincide with May being Arthritis Awareness month, Buckle Me Up have launched a new charity bracelette. These only cost $1.50 American, and 100% of the proceeds go to help Buckle Me Up.

To learn more about Buckle Me Up or to order one of the bracelettes, go to:

http://www.bucklemeupmovement.com/

2) Tiffany Westrich, founder of the Buckle Me Up movement, has been nominated for a Robin Hood Lionheart award. This award would potentially pay for everything Buckle Me Up needs to move forward to Not For Profit status.

Voting closes on May 16th, so go to:

http://www.robinhoodlionhearts.com/?m=profile&id=twestrich_thebucklem18213

to learn more or to vote.

Thanks

Little Miss Autoimmune

Physio

After years of avoiding it, I’ve finally started doing my physio exercises regularly. Before I knew I had arthritis I was very good at doing the physio programmes I was given (for injuries to my neck and hand) but something went wrong when it came to the arthritis programmes.

I had a bad experience with physio early on after my diagnosis. The exercises I was given took me over two hours to do each day because there were so many, and so many repetitions of each. I was given written descriptions and diagrams but no demonstration or explanation so I wasn’t sure I was doing them correctly.

My pain got worse each time I did them and lost range of movement. The physio-therapist was testing my strength each week and that went down dramatically. Eventually, I just stopped going to see her.

Since then, I’ve been given two new physio programmes by the hospital which I have ignored. Finally, I decided something had to change and started doing them.

Surprisingly, I’ve actually really enjoyed doing them. They only take about an hour all up and I can do them while watching TV. I feel like they’re helping both my joints and my fitness. Again, there were only written instructions and diagrams but they were much clearer than the last lot and there were warnings about stopping as soon as it becomes painful. In a couple of places, there were too many repetitions listed and things became too painful to continue. I had one day of not being able to turn my head after doing too many neck stretches but I cut the numbers down and things are now going well.

I was thinking about that first physio-therapist the other day. At first I was kind of annoyed about the whole thing. I had an argument in my head with her (which was interesting since I can’t remember her name or what she looked like.) Then I stopped and thought about my part in the whole thing.

At no point did she hold a gun to my head and say: “Do these exercises or I will shoot!” (imagine this said in a vague accent that comes not from any country but from daytime-soap-opera-land.)

I knew those exercises were doing damage but I kept doing them. I knew I didn’t know how to do them properly but I didn’t ask, and I knew there were too many repetitions but I didn’t adjust the numbers.

I was just as much, if not more to blame for the damage the exercises did to my joints. Often, I think that I have to defer to anyone in a medical profession simply because they are in the medical profession. I forget that they are still human and above all that they are not psychic. If something is wrong, I need to tell them, ask questions or talk through the problems with them. Otherwise they can’t do anything about it and neither can I.

Little Miss Autoimmune

Random Acts of Kindness

OK, so I felt like a bit of a bitch after yesterday's post.

Moral of the story: don't post things on the internet when you're feeling angry. I still agree with what I said, I just wonder if I presented it in the best way.

I do understand where the guy was coming from, and while it hit a nerve with me, I appreciate that he was trying to help.

I decided to put myself in a more positive frame of mind by thinking about the random acts of kindness I have received recently from some very wonderful members of the public.

Without these, many of my days would have been a much bigger struggle than they ended up being.

* Many lovely people have given up their seats for me at bus stops and on buses. Sometimes they've even given up their seat when there have been others available, but theirs was just that little bit closer.

I don't think I can even explain how much I appreciate this. Being able to sit down for five minutes, or while on the bus makes such a difference to my day. In fact, it makes my day possible. Thank you so much.

* A man in the supermarket offered to help me with my shopping because he thought it might be a struggle for me to manage it. I'm not sure if he worked at the shop or not but, either way, it was was very thoughtful of him.

As it happened, I was only buying a packet of chippies, so I politely declined the offer.

Even so, it was a kind gesture and one I'm thankful for.

* A teenage boy picked up my shopping for me when my biodegradable bag biodegraded on the bus.

There was no way I would have been able to pick it up myself. He saw I was struggling and helped me out. I'm not really sure what I would have done without him. It may not seem like much, but believe me, it made a huge difference to me.

* The people in the blood test office always take my blood in the small room off the waiting room because it's closer. They were also really wonderful in cleaning me up and looking after me when my arm randomly decided to start bleeding out.

* When I left the blood test office that day, I collapsed in the foyer and many lovely strangers looked after me. One woman even offered to go buy me chocolate and another walked down the road with me back to my writing space.

I wonder if any of the "givers" of these random acts of kindness actually remember doing them. Possibly the people who found me on the floor in the foyer do but I bet the others forgot about it pretty quickly. The people who gave up their seats probably didn't even think about it again.

For me, these are things I won't forget because they made such a huge difference to my day. I can't repay them, but I can pay it forward and start the cycle of random kindness again. I know it's very unlikely that any of those people will read this but even so, I hope they know how big a difference they made.

Little Miss Autoimmune