Tuesday, May 13, 2014

Forgetting You're Sick

Me and Rebecca having High Tea
(photo taken by our other lovely friend Andrea)

My lovely friend Rebecca from In My Body and I were talking on Facebook chat the other day (at 2am – neither of us could sleep) and this is part of the conversation we were having:

Me: Do you ever feel like sometimes you are so busy being sick, and managing living being sick, that it's almost like you forget you're sick until there is something... (usually something quite small) that you're irritated about not being able to do. And when you're sitting there being irritated about not being able to do it, you suddenly remember all the other things you can't do and it's like you're "remembering" that you're sick?
This was something that I felt very odd about saying. It sounds so stupid to say that I forget that I'm sick when it's a constant and ever present factor in my life. There was a part of me that wondered if Rebecca was going to come back with a comment like "Uh, no. Not really." But this was her reply:

Rebecca: I hear you! I sometimes also get this thing were I have been sitting still and I'm not in much pain and there is energy (or maybe it's motivation) in me to get up and do something and so I get up and go to do something and it's really hard to do and I'm like 'What's wrong with me? I'm so unless at this' and then I remember I'm sick.
It was such a relief to realize that someone else felt the same way I did. We went on to talk about the fact that we both have dreams where we are not sick, but are still experiencing pain. Our dreaming brains have invented monsters, attackers, insects and (really unprofessional) surgeries to explain the sensation of pain without having to admit to ourselves that we’re living with chronic illness and disability. Similarly, I often wake up in the morning and panic because I can’t move. My brain strays to thoughts of strokes or paralysis before I finally remember that this happens every morning. My joints are just stiff, not paralyzed, and will eventually start moving again once I calm down. 

But yet, it’s still so easy to forget it all in the in-between moments. We’re forever healthy people trapped inside sick people’s bodies.

Sometimes I think living with a chronic illness is like a prolonged grieving process. You lose the ability to do something or develop a new symptom, grieve about it for a while, learn to adapt find and that life is not so bad, forget about it for a while, then remember it and start the process again.

While of course I would never wish for anyone else to be in pain or experience the frustration of forgetting/grieving about it, it was almost exciting to realize that Rebecca felt the same. And that’s why I'm sharing this here. If you’re busy swinging around on the roundabout of repeatedly “forgetting” and “remembering” that you’re sick, try and also remember that you’re not alone. There’s a least two of us that feel exactly the same.

Thanks for reading
Little Miss Autoimmune

Sunday, May 4, 2014

One Hundred and One Small Problems

“How do you do up your bra when your joints are swollen?”

After I got over the shock of being asked this question out of the blue the other day (and stopped laughing) I admitted I don’t. When my elbow/hand/shoulder joints are too stiff or sore to reach behind my back, I skip the bra and just opt for clothing that makes that fact less obvious. This is just one of the many small problems I face living with autoimmune arthritis.

Often people focus on the big issues with autoimmune diseases – permanent disability, mortality rates, infertility, risk of infection. And don’t get me wrong, these are BIG problems, but there are hundreds of other small problems that I, and others like me, face every day. Most of them seem insignificant in comparison to the big stuff. Some of these problems are even kind of funny, and make good anecdotes if told right.

I once went to a dinner party, and had to keep my coat on until a good friend arrived because I hadn’t been able to do up the zip in the back of my dress.

I once had to get the sales assistant to take the tag out of a top I was trying on while I was still wearing it - not because I was so desperate to wear it home - but because once I’d put it on, my shoulder froze and I couldn’t get it off again.
And a couple of non-clothing related ones: 

I once splashed a whole cup of water into my own face in front of a group of people, because my arm and neck spasmed at just the wrong moment. No-one saw the spasm. Nervous laughter ensued.

My leg once gave out while I was standing on the bus, and I collapsed into the lap of a complete stranger. Fortunately he thought it was funny too.

But most of the daily problems are not so funny. 

Tonight I took ten minutes to break the seal on a jar of pasta sauce. When I finally got it open, the jolt hurt my wrist so badly I literally screamed from the sudden pain and started crying.

Yeah, not such a great anecdote. So now I’m sitting here with my wrist in a splint and typing this one handed, while I recover enough to use the pasta sauce to make my dinners for the rest of the week. These kinds of problems make even the simplest tasks a lot harder, and often problems involve asking myself a lot of questions before I do anything:

·         Can I carry this without dropping or breaking it? If I carry it for too long will my hand “lock” around it, so I can’t let go? Will my handbag be too heavy if I add tissues/water bottle/medication/eye drops etc. etc. etc.? If I don’t bring them and end up needing them, will I be able to manage, or will I have to come home early? 
·         Can I go to ---insert place name--- since my symptoms mean I can’t drive? If I go by bus, will I be able to get on and off again safely? When so-and-so says it’s within walking distance of the bus stop, is that my walking distance or a healthy person’s walking distance? If I walk/bus will that use up all my spoons, before I even get there?
·         Will I be able to dress myself without assistance if I buy this piece of clothing? Will people notice that I haven’t been able to wash/brush my hair today? Can I open my jaw enough to brush my teeth today? Can I brush my teeth anyway, since my mouth is filled with ulcers? If I don’t brush my teeth, is that tempting fate for infections? Should I just stay home?

Still not as significant as the big stuff, right? Well, if there were just a few of these problems, it wouldn’t be that big of a deal. But when there are hundreds of them every single day, it’s easy to grow weary of them. Even the funny problems, aren’t so funny when in the back of your mind there’s one more looming question:

Why can’t anything ever be simple?

Thanks for Reading,
Little Miss Autoimmune

I wrote this post as part of the lead up to the 2014 World Autoimmune Arthritis Day online conference (6am ET/USA May 19th- 5am ET/USA May 21st) the theme of which is “A Day in The Life of An Autoimmune Arthritis Patient.” You can learn more about WAAD14 or register at http://www.worldautoimmunearthritisday.org/! REGISTRATION IS REQUIRED for the online virtual conference.