Saturday morning, a few hours before noon:
The fan in the window blows soft, still-cool air and white noise into the room. My chair creaks as I write; writing requires a certain stillness but my joints are stiff; shifting a little now and then eases them. Bright sunshine makes glowing, lime-green shapes out of the grape leaves on the tendril trying to wriggle through the screen and turns the pink damask roses climbing the arbor into the ones I used to gaze at on my grandma’s talcum powder box in her bathroom. I loved the scent of her powder: it evoked old lady and steel teaspoons offered for digging in the soft soil in her garden to make earthwormy mud pies. The talcum scent was grandma: the soft summer mistress of fresh cherry pies with open basket-weave crusts, served in wedges with grand scoops of melty vanilla ice cream on chipped blue plates.
She taught me the itsy-bitsy spider/water spout song.
EVENING, SAME DAY
Tonight my hands are swollen and hot. They hurt. There’s almost nothing you can do that doesn’t require the use of your hands, so there are very few moments when I’m not noting the pain and trying to ignore it. I’ve taken my magical potions. I’ve performed the solemn rituals with hot paraffin wax; the gentle massage with cool glycerin salve. I’ve put on my warm compression gloves, only to take them off again because my hands sweat and I get too warm wearing them. That’s just another discomfort, one I can control, so I did. I’ve meditated, hands loose at my sides, unmoving, resting. I’ve immersed myself in distractive activities, and I’ve bulled on ahead and done many things today in spite of the pain, proving once again that the rheuma dragon isn’t going to stop me from doing as I like.
So there. Neener-neener!
But what I keep coming back to is this: At this moment, every moment, my hands are swollen and hot, and they hurt. And there’s not a bloody thing I can do about it.
To those of you reading this who don’t have RA: Think of how you feel when you have a sick headache that just won’t let go, but you still need to keep going and get through your day. Now imagine that sick-headache-feeling centered in your hands, or your hips, or your knees. That’s how a medium-intensity RA flare feels to me. For a severe flare, think migraine.)
This, then, is the basic frustration caused by rheumatoid arthritis. There are times when the joints become so inflamed and painful that all activity has to stop. Just has to. No choice. It’s awful when it happens, but at least a severe flare means that I can justify my stillness, my aggravation, my rocking as I try to comfort myself, my tears, my anger, the handfuls of pills. But this kind of flare – the flare that inflames the joints only halfway, so that they’re stiff and full of pain, but still usable – is almost worse, in my opinion. Because this kind of flare is mostly invisible. Hide-able. I can still prepare meals, scrub dishes, sweep floors, feed pets, plant flowers, fold laundry. (An aside: folding the towels, each one dry and hot right out of the dryer, felt crazy good on my sore hands today. Thank you, universe!) I can still do all those things, but each movement, each moment, hurts. And hurts. And hurts.
Don’t get me wrong. I’m grateful that I can still function. I’m grateful that I can plant flowers and cook a delicious and nutritious meal. But this kind of rheuma flare wears a person down. It goes on and on. Days. Nights. Weeks. Once in a while there’s a short respite; I’ve gone half a day before I even noticed that my hands didn’t hurt. The constant pain, as low-level and therefore dismissible as it is, starts coloring everything in dark tints and tones of reddish-gray. My mood shifts from good to neutral to bad. I see the gifts the world presents to me, but I can’t conjure up more than a disinterested shrug. My creativity wanes; I lose my motivation. My mouth has to be forced to smile.
I’d almost rather have the rheuma attack me the way it used to: Hard and mercilessly, causing pain that was literally overwhelming and that lasted 24 hours or three days, but then went away as quickly as it came on, leaving me tired and shaken but pain-free for a while. That rheuma was awful, but after a while it became familiar. I understood its limits – and my own.
But this … this constant, day-after-day-after-day, low-grade pain is sapping my strength. It’s making me whiney, and angry, and hopeless. Because I know that it’s not going to go away, except for brief moments here and there, and then it will be back, just the same. It’s my rheuma-dragon’s newest tactic; he’s taken up guerilla warfare. War by attrition. Winning by simply outlasting the enemy. Conventional tactics don’t work against it; you can’t beat it with soldiers and heavy artillery (powerful drugs and painkillers).
You have to get to the root of the problem and make changes there. (Lose weight. Eat mindfully. Move your body). It’s slow. It seems useless. But over time, it can work.
Heh. I just imagined my body as Northern Ireland during the Troubles. Take that, rheuma-dragon! You haven’t killed my imagination yet, you bugger!
This post isn’t a call for sympathy; most of you who are reading this are quite familiar with what I’m writing about. And you know, as I do, that even this won’t last forever, that I’ll feel better before long, that a good night’s sleep will renew my strength and courage, that tomorrow’s another day, another battle, another victory. Instead, I wrote this post to get the feelings into something tangible. Into words. To get them out of my mind and while I did, forget for a short while how hot, swollen, and sore my hands are.