I’m an old Yahoo homepage fan. Every morning I open my browser, click on Yahoo, and then click on the Weather Channel box. First, I note the temperature, and then I scroll down to where it shows the moment’s barometric pressure. I’m ever curious as to what it’s doing, even though my joints already know.
If they’re voicing their presence in anything from a growl to a screech, the barometric pressure is on the rise. Checking the official reading is merely a way to acknowledge what I already know. I always feel a sort of aggravated pride when I see the little arrows pointing up. “Ahah!” I think. “Yep, barometer’s rising. That’s the reason.”
I’m not sure exactly why this matters so much to me. Rheumatoid disease (aka rheumatoid arthritis) is so bloody inexplicable, so capriciously random in terms of pain or no pain and its intensity, which joint will be affected (and for how long), and whether other symptoms (swelling, fatigue, malaise) appear, perhaps being able to attach a reason for it gives me a tiny feeling of control.
And that’s important when it comes to chronic illness and pain. These maladies swipe away any control we might have had over our lives. They swipe it from day to day, sometimes even from hour to hour or minute to minute.
I pour myself a cup of coffee. But when I curl my fingers around the cup’s handle and try to lift it, a spear thunks through the small bones of my hand, setting them screaming in sudden pain. I put the cup down hard, slopping hot joe all over the counter, and clutch my stricken hand to my chest. I rock, moaning under my breath, as I wait for (hope for) that awful speared feeling to subside.
My RD just stole a random, routine moment of control from me. The feelings that bubble up along with the pain and sudden disability include shock, bewilderment, despair, frustration, aggravation, anger, and fear.
Carefully, I flex my hand. The pain is so gone it’s hard for me to believe it was even there a few moments ago. With a sigh, I mop up the spilled coffee and—gingerly—lift the cup again. No problem. No pain. Nada. So I get on with things, determined to ignore what just happened. But that tiny, sharp-edged pebble of despairing fear remains wedged in the depths of my mind, influencing everything I do for the next several hours, at least.
I can’t explain why my RD speared my hand. I can’t explain why the pain was so intense, or why it was so brief, or why it went away without a trace. And though I try, I also can’t dislodge that left-behind pebble of fear, the one that’ll make me wary about lifting anything heavier than a pencil for the rest of the day and make me wonder if that transient pain was merely a precursor of much worse pain to come. Because it has been in the past. Many times.
This is how RD steals control. It doesn’t necessarily have to totally disable us or wrack us with continuous, overwhelming pain. All is has to do is niggle now and then, reminding us that we’re not well like most of the people around us. It reminds us in a myriad of variable tiny ways that its part of our moment-to-moment existence, that no matter which powerful drug or combination of drugs we’re taking for it, it’s still incurable. That spear of pain reminds us that although the drugs seem to have been mostly working to slow down or halt the progression of the disease, it may have just found a way to circumvent them. It may have just rendered them useless, setting the stage for months of pain and disability as we try new, different drugs against it.
And it makes us feel like hypochondriacs. Like we’re obsessing over our disease, over our fate. It makes us feel like whiners and gripers, embarrassing us, forcing us to hide our disease—and our pain—as much as we can.
As I sit here writing this post, I’m suddenly aware of my hip joints, those magnificent, amazing ball-and-socket joints that allow me to walk, move, turn over in bed, and even sit and stand. I’m aware of them because they hurt, even though I’m still. The grating ache is mild, maybe a 2 on the 1-to-10 pain scale doctors like to use, but it’s pain nonetheless.
Why does this bother me? Well, because when our joints are healthy and not under attack, we don’t notice them. We don’t suddenly become aware of how smoothly and painlessly they’re working. We don’t note them when we’re sitting. We don’t think, “gosh, my hip-joints feel like, well, nothing. How great!” Forced by my RD to notice my hip-joints, I feel a sudden flush of disheartenment. And fear. And disgust at myself because once again, my mind is on my disease.
I guess it’s no wonder I like to see outside confirmation of my distress, even if it’s just in the form of two little upward-pointing arrows next to a barometer reading on a website. It means that my discomfort isn’t all in my head. It’s an affirmation.
“Ahah,” I think in triumph. “That’s why!” Take that, rheumatoid disease!
I can’t count how many times my RA has lulled me into a false sense and then suddenly appeared in a new way… it’s exactly as you say, “inexplicable”. There’s no rhyme or reason to this disease. I don’t even need to look at the barometric pressure, there’s a switch that activates all my joints when a change is coming. My affirmation came when my CRP was out of range – suddenly it was this revelation that I wasn’t crazy or imagining my pain…. although sometimes I think I would prefer that than to actually have RA ;). Thanks for this lovely post. I hope you are doing well. Cheers.
P.S. – love your new picture. You look radiant 🙂
Hi Wren! Love the new picture! So much more like the wonderful woman I met in Boston. Interesting, my joints hurt when the barometer drops — a storm is coming in. But I agree. I hate the inconsistency of RD. It would be so nice to go to the doctor and say, “It hurts here.” Instead you have to say, I have the occasional pains here, and here, and here, but not today. Still hoping Humira kicks in for you and gives you blessed relief.
And in this season of celebration and thanksgiving I a thankful for my RD family.
Oh Wren, you put MY frustrations into words so beautifully it makes me wonder why I blog! 🙂 I really hope the Humira works wonders for you soon though! I had agonising shooting pain in my wrist the other day from putting a SMALL packet of flour into a supermarket trolley and I’ve been ‘favouring it’ ever since in case I have more pain, but actually have hardly had any – so your post was spot on for me (again!)
You mean I’m not a hypochondriac?!!? Good to know others experiences, thank you so much for sharing. I had one of those “moments” yesterday with my knee. Up to this point, my knees have never been a problem. Whatever that zap was that I felt, it lingered for about 1 minute or two, brought tears to my eyes, then disappeared just as quickly. I hope your day is a good one…