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