I’m sitting on my sofa, my laptop on my lap-desk. I shift to get more comfortable. Now the computer is too close – my elbows are sticking out. I stop typing, grasp the laptop and lift it up to move it back a little.
Although I’ve been typing for quite some time without pain, the slight weight of the computer on the joints in my fingers make them feel like they’re being shoved rudely sideways inside my skin. I yelp and let go of the laptop. I stare at my fingers. They look the same as always. Of course.
Last night. Supper time. My sweet son-in-law-to-be, Matt, has prepared a lovely rack of barbecued ribs, baked potatoes, green beans and toasty garlic bread for us (he’s a keeper, that young man). I pick up a knife to slice between two of the smaller ribs. I start to cut. Pain – instant, shocking – shoots through my knife hand. I yelp. Drop the knife. OK, I give. I ask Matt to cut my meat for me. He does it cheerfully, but I’m humiliated. I feel like a child.
Is this disability? While the pain in my hands is mostly mild today, it feels disabling even though it hasn’t really stopped me for long. Had I been alone at supper time last night, I could have gritted my teeth and cut my meat myself (or I’d have skipped the ribs altogether). Today I was able to move my laptop even though it hurt. So what’s the big deal?
See, that sudden, wrenching pain, even after years of dealing with it, always catches me by surprise. It’s like a slap out of nowhere, for no reason. It reminds me that I’m not right, that I have to be careful or I’ll get smacked again. It hurts. It makes me tentative about just doing.
And, it’s insidious. My apprehension builds up over time, under the surface, working quietly but treacherously just like the rheuma itself. Not only do I become tentative regarding how I use my hands, my mood shifts. I get grumbly, at least to myself. And I also start to fear that a larger, more severe flare in my hands (or whichever joint is “twinging”) is imminent.
Sometimes I’m right. Sometimes I’m not. I’m grateful when it doesn’t get worse, but the harm to my psyche has already been done. I’ve been cowed again. Slowed down. The smile has been wiped off my face, even if just for a moment. And I’ve been reminded again (as if I’d forgotten) that even when the rheuma isn’t so bad that I want to cut the offending limb off entirely, it’s doing its sneaky, silent work, slowly breaking down and ruining my joints. It has one goal: to truly disable me.
I talked with my mom on the phone this morning. She asked how I was, so I told her. My hands hurt. She asked, “isn’t that medicine you’re taking helping at all?” Yes, I said, the doctor says my sed rate is lower than it was. He says that means there’s not as much inflammation in my body as there was before, which in turn indicates that the drug is doing what it’s supposed to do, which is slow the progression of the disease and perhaps save me from disablement down the road.
What the drug doesn’t do is relieve the constant pain, whether it’s low grade, like now, or terrible, which it has been in the past and I know will be again. Maybe later today. I never know, really. It’s like limbo. And that constant reminder, that knowledge, that big pain is waiting in the wings eventually starts grinding me down. It affects how I make my plans for the day, for the week. It affects my mood. I do my best to grin and bear it, but sometimes my grins are more like clown masks. They don’t reflect how I’m really feeling because to show that would be to give in, to let the hurt, crying child I feel like down inside come out into the open.
I don’t tell my mom all of this, of course. I don’t want to worry her any more than she already is. She’s long familiar with my disease, though she doesn’t understand it very well. “Can’t you take something for the pain?” she asks.
Yes, I can. I can take Tylenol (which I have, today) and tramadol, which blunts mild to moderate pain (which I haven’t, yet). If the rheuma decides (yes, I think of it as a thinking, malevolent, sentient being) to gift me with a really severe, nasty flare, I have a bottle of Vicodin in my medicine cabinet. It helps some, but not as well as I’d like, and it comes with a dark price. It makes my brain floaty. Drowsy. I don’t dare drive in that condition. I don’t dare pick up a sharp knife for fear of cutting my fingers off by accident. I also dislike the after effect they have on me. I feel like I’m slow and foggy-brained for half a day after I take them.
But worst of all, even though they work the best to relieve the pain, opiates like Vicodin are addicting. We build up a resistance to them after a while, so we need increasingly higher doses or more powerful drugs in the same family to get the same effect.
That scares me. How will I cope with severe flares when opiates don’t work anymore for me? As a result of that fear, I take them as seldom as I can.
I know this post is whiney. It helps, though, to put my feelings about rheuma and its affects on me in writing. It’s a rant, I guess, and there’s some relief in ranting, even just to myself and the few people who happen to read this blog. If you’re reading this, at least you probably know exactly what I’m talking about. It’s nice to know that we’re not alone in battling this disease, isn’t it.