Climbing through it

Went to Costco yesterday and found two thick, fluffy, memory foam pillows for my bed. Since my camp-out at Mom’s house became permanent, I’ve added a thick memory foam pad to the guest bed. It has helped a lot in the long, painful night department. Pillows of the same material, I figured, could only be good.

I was right. I felt enveloped in softness from head to toe when I crawled into bed last night. All of my body’s painful pressure points disappeared. I fell asleep quickly and stayed asleep all night. It was absolutely lovely.

The price—and there is always a price for good things, I’ve found—was hot, sharp pain in my hips and surprising disability when tried to get up this morning. The transition from comfort to not-comfort was instantaneous as I sat up and swung my legs over the edge of the bed. I could walk. Slowly, taking small steps. My first trip downstairs for coffee, yogurt and my morning rheuma meds was dicey. I took the carpeted stairs carefully, one at a time, gripping the banister hard for support, wincing and holding my breath, and as I did, I flashed back to the stairwell to my third-floor flat in Northern Germany, where I lived when I was first diagnosed with RA. This—carefully, slowly, painfully—was the way I’d made my way up and down those stairs each day, usually more than once, since we had a dog who needed walkies. The downward journey was just as hard as the upward, and often more frightening. Stepping down on a flared knee or foot or ankle is an invitation to fall even on level ground. I remember standing at the bottom of those stairs, gazing at them, knowing that if I wanted to get home, sit in a comfortable chair and rest, run a hot, soothing bath and yes, finally take the powerful pain meds that would relieve the pain but make me dopey for a while, I’d have to climb those stairs. And the sooner I started, the sooner I’d be done. So I’d set my jaw and climb. Sometimes the pain was so stunning it made my stomach sick, but I’d climb. I’d lift my right foot to the step, set it down carefully, grip the banister tight as I put my weight on it and do the same with the left foot, so I’d be standing on both feet on the step. Then I’d repeat the action 47 more times, resting and gathering courage on the landings.

The good news is that the hard pain from the bursitis this morning eased after I’d moved around for a while. The muscles in my thighs and that long band of ligament that runs along the outside of my leg between my hip and knee warm up. They stretch after tightening during the night. Bursitis is a much different disease to RA, awfully painful at times but not fearfully so. It’s aggravating, a constant background ache. It sucks energy and grays my mood—something I really, really need to work on—but  even at its worst, bursitis pain barely touches the pain of a bad RA flare.

What I’m getting to is this: Those of us who have had our lives infused and colored by rheumatoid arthritis are strong. Incredibly strong. We live, we meet our responsibilities, we love and laugh, we play and weep just like anyone else—and we do it while bearing pain that would make Schwarzenegger wimper. I’m not kidding. Just think, for a moment, of all the things you accomplish each day. You do a lot. And you do it in spite of the pain.

Sure, sometimes you have to stop. Sometimes the pain becomes too severe, and moving causes agony. During those resting times you and I store up reserve energy, somewhere out there in the cosmos, but handy at a moment’s notice. We know we’ll need it, once the current flare has passed. We might use it in dribs and drabs, a little at a time when the rheuma just makes us twingy and sore, but not disabled. We’ll use it when the rheuma wallops us with a heavy, wet sack of fatigue. We’ll use it at work, forcing ourselves to keep going when what we’d really like to do is curl up under our desk and rock until the pain goes. And we keep going. Keep doing. It’s what we humans do, even the ones with autoimmune diseases that make us live with awful pain.

At this moment, my rheuma is dozing. My hands are only a little stiff, a little achy. My hips hurt more from the bursitis (which is, I’m told by my rheumatologist, a co-morbidity of RA). Unlike rheuma, though, keeping the muscles and ligaments in my legs loose and warm and stretched out helps. And today is a nice, lazy one. There’s nowhere I have to go, and little that I have to do. I’m resting. Storing up spoons. And even though that good night’s sleep last night resulted in hips more painful than I’ve felt in a long, long time, I’m looking forward to my soft nest again tonight. And of course, I hope that the morning pain was just a fluke.

Hmm. I think the same way when the rheuma bites hard and unexpectedly. I hope—even after 24 years—that it’s just a fluke.