Recently, my normally tamped-down, RD-triggered fear for the future crept up on me. I began to believe that my rheuma-dragon would win our lifelong battle after all. I started doubting that I could keep on keeping on, the way I have for so many years. The fear came on during a bad flare. It was worse than any I’d endured in a very long time.
I call my fearful, nail-biting, drooping spirits The Dreads.
Usually, like my namesake, I’m a tough little bird. I like to believe that I can handle whatever hardships rheumatoid disease can toss at me. After all, I’ve been through some seriously rough times in the past. I’ve endured countless elongated, sleepless nights, wracked with the kind of pain I wouldn’t wish on my worst enemy. I’ve stood and cried helplessly in front of a closed bathroom door because my hands hurt so badly I couldn’t grasp the knob to open it.
Dramatic? Yes. True? Oh, yes. Over the last 28 years I’ve overcome--or at least, waited out--overwhelming pain and disability many, many times. You know the old saw: “what doesn’t kill me makes me stronger.”
Yet there I was on this recent weekend, tightly wrapped in a serious case of The Dreads. It’s hard to say why. There are so many reasons our courage can drain away without warning to leave us crouched and quivering with apprehension.
Maybe this was it: the increasing, disabling pain that had settled into my wrists, hands, ankles and feet over the previous week suddenly blew through the roof that weekend. Then, I got to thinking about the cocktail of chemical DMARDs I’ve been taking for the last five years. They obviously haven’t been working very well lately, so now I’m shooting up a biologic TNF-blocker once a week along with them.
But my pain was increasing anyway. Without meaning to, I visualized the damage the disease might be doing to my joints--and to other parts of my body. Why, I wondered miserably, aren’t those drugs--especially that powerful, futuristic biological wonder drug--absolutely murdering my RD? Here I was, facing the start of a long, blistering hot, drought-stricken summer feeling positively crappy. The thought made me wilt. I was in pain, feeling sickish and dull, and worn all the way down to a nub.
Even more worries piled on. I live with and care for my elderly mother, who’s becoming weaker and more frail with each passing season. How can I take care of her, I fretted, if my RD gets worse? And if it keeps getting worse, how am I going to keep bringing in a living, as meager as it is? Another frightening thought hooked into my trembling mind: all those drugs I’m taking have potentially awful side effects. Are they murdering me instead of my RD?
The Dreads closed in around me. Oh, I had them bad.
The extent of the pain, illness, and disability rheumatoid disease causes may vary with each individual, but they’re dreadfully real. Even the bravest among us can find themselves occasionally overwhelmed and fighting for air against The Dreads, like I was. It has nothing to do with physical or mental strength, and everything to do with the stressors of the moment.
I’d faced and dealt with a lot in the previous weeks. My mother’s health had been up and down. My sister had visited for one of those weeks, and while we had a great time, I’d been far more active than I usually was while she was here, and I was very tired. I’d scrambled to meet a couple of writing deadlines, even though my pain levels had been slowly ramping up in spite of the new biologic I’d started a few weeks earlier. The previous one I’d taken had failed me miserably. Naturally, I was worried that this one might, too, and now I was enduring serious pain and disability.
It’s no surprise that I had an attack of The Dreads.
But here’s the thing: in today’s world, we can fight rheumatoid disease. The drugs available really can and do slow the progression of the disease down to a snail’s crawl. I’m living proof: the chances are very good that if I hadn’t started taking DMARDs for my RD five years ago, I’d be far sicker and more disabled than I am right now.
We’ve also learned a lot about how nutrition and exercise can help keep RD symptoms under control. And eating a healthy diet and moving our bodies can help us cope with the disease mentally, as well, keeping depression at bay.
To cure myself of The Dreads, I had to shift how I was thinking. Instead of focusing on my pain and disability, I forced myself to think about everything I could do anyway. I got out a good book and started reading to distract myself from myself. I streamed some great movies and watched them with Mom. I played with and stroked my cats.
And to help me wait out the flare--and its attendant pain--I got my ice packs out of the freezer and alternated them with microwaved heat packs. I took a hot shower. I went to bed early. I went out of my way to make myself as comfortable as I could.
Most of all, I reminded myself of the many times I’d lived through bad flares in the past. They’d all ended eventually, and I was able to pick myself up and move on. I was doing everything I could to treat my disease. I made myself look at all the things I can do, instead of all the things I can’t.
And I forced myself to stop thinking about a future that hasn’t taken place yet. There’s no sense in living in that future and being fearful of it any more than it does to live in the past. Today is what matters. I might as well make it the best I can.
Here’s the facts: many--even most--people can live full, happy lives with rheumatoid disease in spite of the fact that remission remains rare and there’s still no cure. There’s serious reason to hope that those facts change one day soon. Dump The Dreads, but be sure to forgive yourself if they creep up on you now and then. You’re only human, and humans think too hard sometimes. They’ll go away as soon as you pull yourself back to living right here, right now, and leave the future to come as it may.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?