This month’s Patients for a Moment, hosted by Leslie at Getting Closer to Myself, asks: what gets you down, and what do you do to pick yourself back up?
This took a bit of thinking. At first, my mind wandered to all the things I can’t do. Skiing, circus performing, general running about. But that’s not what really gets me down. Maybe I’d be more bitter if I’d grown up doing those things and then had to give them up, but I didn’t. It’s hard to feel cheated out of something you’ve never been able to do.
No: what bothers me more than almost anything else is when it hurts to do nothing. When I find myself saying things like:
“Ow, it hurts to sit on the couch and read.”
“Ow, lying in the bath hurts.”
Or, worst of all,
“Ow, lying in bed hurts.”
That’s when I really feel helpless. The fact that I’ll never be a trapeze artist seems reasonable enough in the circumstances. I’ve got a chronic illness. My joints are all shitted up. Of course there are lots of things I can’t do.
But I feel like I should – I REALLY SHOULD – be able to lie around doing nothing without pain. And when, after a day at work or school, I’m plopped on the couch and everything still hurts – well. That’s when the shaking-of-fists-at-the-universe happens. Because I feel like I’ve given a lot to this disease. I was a more careful child, a more careful teenager, than any other kid I knew. I turned down invitations, felt my face seared with humiliation whenever I attempted and failed some simple physical task. I spent mornings in physio, swallowed pill after pill, awkwardly explained my puffy knees to classmates. The least RA can do in return is let me put my feet up occasionally.
And there’s another reason this whole thing gets me down: it scares me. I mean, come on: it hurts to lie down? Really? I know I can handle it now, but what if one day I can’t? What if it gets worse? It’s hard to ignore pain and discomfort when there’s nothing to distract you, and so it’s these times, when I’m attempting to do nothing, that my arthritic future looms most frighteningly in the near distance.
So I mope. But wait - all this, and I’ve only answered the first part of the question. Now that I’ve gone all maudlin, what do I do to pick myself up?
The answer, underwhelmingly, is nothing. But it’s also an okay answer, because I get picked up anyway, just by carrying on. Inevitably after a night of uncomfortable tossing comes a normal day of running around, working, having conversations. Distractions, in other words. The future will be full of them, and I’ll get on with it then just as I do today.
Not much of an answer, I know, but I think it's all we can really do. I could - and sometimes do - treat myself to a new top or a manicure, watch something that makes me laugh, or moan to a friend, and all of those things would help. But there would, sooner rather than later, be another moment in which I would lower myself into a warm bath and think, "well this doesn't make any difference. It still feels like someone's grinding broken glass into my ankle."
The only way to pick up my mood in the long term is to pick up my body in the short term; to do the things that need doing. Sometimes it'll hurt, and sometimes I'll have to do less than I wanted. That's the way it is. And meanwhile, there will be the occasionally couch/bed/bath mope-athon.
I guess that’s just another thing RA wants from me.