This post will be included in the International Foundation of Autoimmune Arthritis’s World Autoimmune Arthritis Day Blog Carnival.
I am so lucky.
A day in my life today (with rheumatoid arthritis) is, first and foremost, not as painful as a day in my life was when I was first diagnosed in 1987. Since then I’ve experienced years of truly awful pain, years when my RA seemed to go to sleep and I was blessed with the elusive “remission” we all dream of, and finally, the recent years, when the “dragon” woke up again.
Today, when I wake up in the morning, my body feels stiff, sore and sludgy. The knuckles of both hands are swollen, so I have to be careful not to drop my handful of RA meds when I take them. I pour myself coffee (one hand grasping the handle of the glass carafe, the other supporting it with a potholder) and gratefully, I settle into my armchair. I pick up my laptop computer, open it, and sip coffee while I read over the news of the day, enjoying the peace of the morning—and the fact that I don’t have to rush around anymore …
Not like the old days, when waking up meant stiffness and sludginess, just like now, but it also meant that standing up from bed gave me my first breathtakingly sharp, rude jolt of pain for the day. My RA attacked joints in my feet all day, almost every day. It made every step I took painful. Some days my joints swelled, and I’ve have to wear loose, slip-on shoes. And if I was lucky, that was all I’d have to deal with. If I was unlucky, another joint would be flaring as well: a knee, an ankle, a shoulder, the pointer-finger of my right hand…
Today, by the time I’ve been up for two hours the worst of the stiffness has gone. The Tramadol I took first thing has sent the pain in my hands to a back room in my brain (though they remain swollen and a bit clumsy). By 9 a.m. I’ve finished my coffee and had a little breakfast. I go back upstairs to take a shower and get dressed, and now I can walk up the stairs comfortably. Going to work is a breeze: as a professional freelance writer, my workplace is my desk upstairs.
What a difference! In the bad old days, there was no time to wait for my meds to work. (And since they consisted of NSAIDs alone, they didn’t work anyway.)I was into and out of the shower first thing. Dressing could be interesting; putting a shirt on over a flared shoulder or tugging my slacks up with flared fingers was an exercise in stoic determination. I tried to keep any moans and groans to myself, not wanting to worry my daughter. She was seven. Once I was dressed, I’d wake her up, get her dressed, comb her hair… all those things moms do on school-day mornings. I’d get us some breakfast and pack her lunchbox. Some days that was easier than others. Somewhere in the middle of all that, my husband took off for work …
Today the knuckle at the base of that same index finger is fairly painful—it’s just annoying, though. It won’t slow me down much. At my desk, as I wait for my laptop to boot, I put both hands through a series of exercises, warming them up, getting the joints moving more smoothly. That one knuckle is going to be aggravating. I take a deep breath, accept it as it is, and get to work.
Back in the late 80s, getting to work meant driving my little stick-shift car. Work wasn’t far away, but driving could be an agonizing—and dangerous!—undertaking when my left knee, or my big toe on my left foot, or any joint in my right hand flared. Some days instead of risking my life or the lives of my fellow drivers, I’d take the city bus instead. But that meant walking several blocks to the bus stop, and then standing there for 10-15 minutes waiting for the bus. Walking and standing were dreadfully painful every day. It felt like I was walking on gravel. And once on the bus, which was always crowded, I’d usually have to stand, hanging on to a hand-strap. By the time I got to work, I couldn’t wait to get to my desk so I could take my weight off my throbbing feet.
Today, my days are pretty darned good in comparison. My feet hurt sometimes, but never as bad as they used to. I generally don’t have flares in any of my larger joints anymore, either. Because my hands are swollen, a bit stiff, and sometimes painful, I can never really forget that I have RA during the day. It’s not like breathing, which we mainly do without even thinking about it. But I’ve got to say right here that I realize how lucky I am. I realize how fast things could change for the worse.
It could happen overnight. Just like the onset did. Just like the remission, when it came in the mid-90s. And just like the way my RA returned after a six-year nap. Like Jack Nicholson in The Shining, there it was, wielding its wicked knife to thrust into my joints. I’m b-a-a-a-a-k!
By tonight’s early evening my hands are a little more swollen. They’ve become more painful, too. The Tramadol isn’t working so well anymore. But usually by then my work is done for the day. No more typing. I can relax, dip my hands in the paraffin bath or microwave my lavender-scented gloves and slip my hands into their soothing, moist warmth. When I go to bed, if I’m lucky—and I usually am—I’ll be able to drift off to sleep without too much trouble.
I try not to remember those miserable, countless nights in the old days. I was often in so much pain there was no way I could sleep. I can remember nights when I stood crying at the bedroom door because it hurt too much to open it. Nights spent sitting on the sofa, rocking, trying to concentrate on the book in my lap instead of the monstrous pain. And other nights spent floating gently in a narcotic fog, aware of the pain that lived in it, somewhere, but thankfully locked up for a few hours.
They’re behind me, those times. And if my luck holds, that’s where they’ll stay.