Saturday morning, a few hours before noon:
The fan in the window blows soft, still-cool air and white noise into the room. My chair creaks as I write; writing requires a certain stillness but my joints are stiff; shifting a little now and then eases them. Bright sunshine makes glowing, lime-green shapes out of the grape leaves on the tendril trying to wriggle through the screen and turns the pink damask roses climbing the arbor into the ones I used to gaze at on my grandma’s talcum powder box in her bathroom. I loved the scent of her powder: it evoked old lady and steel teaspoons offered for digging in the soft soil in her garden to make earthwormy mud pies. The talcum scent was grandma: the soft summer mistress of fresh cherry pies with open basket-weave crusts, served in wedges with grand scoops of melty vanilla ice cream on chipped blue plates.
She taught me the itsy-bitsy spider/water spout song.
EVENING, SAME DAY
Tonight my hands are swollen and hot. They hurt. There’s almost nothing you can do that doesn’t require the use of your hands, so there are very few moments when I’m not noting the pain and trying to ignore it. I’ve taken my magical potions. I’ve performed the solemn rituals with hot paraffin wax; the gentle massage with cool glycerin salve. I’ve put on my warm compression gloves, only to take them off again because my hands sweat and I get too warm wearing them. That’s just another discomfort, one I can control, so I did. I’ve meditated, hands loose at my sides, unmoving, resting. I’ve immersed myself in distractive activities, and I’ve bulled on ahead and done many things today in spite of the pain, proving once again that the rheuma dragon isn’t going to stop me from doing as I like.
So there. Neener-neener!
But what I keep coming back to is this: At this moment, every moment, my hands are swollen and hot, and they hurt. And there’s not a bloody thing I can do about it.
To those of you reading this who don’t have RA: Think of how you feel when you have a sick headache that just won’t let go, but you still need to keep going and get through your day. Now imagine that sick-headache-feeling centered in your hands, or your hips, or your knees. That’s how a medium-intensity RA flare feels to me. For a severe flare, think migraine.)
This, then, is the basic frustration caused by rheumatoid arthritis. There are times when the joints become so inflamed and painful that all activity has to stop. Just has to. No choice. It’s awful when it happens, but at least a severe flare means that I can justify my stillness, my aggravation, my rocking as I try to comfort myself, my tears, my anger, the handfuls of pills. But this kind of flare – the flare that inflames the joints only halfway, so that they’re stiff and full of pain, but still usable – is almost worse, in my opinion. Because this kind of flare is mostly invisible. Hide-able. I can still prepare meals, scrub dishes, sweep floors, feed pets, plant flowers, fold laundry. (An aside: folding the towels, each one dry and hot right out of the dryer, felt crazy good on my sore hands today. Thank you, universe!) I can still do all those things, but each movement, each moment, hurts. And hurts. And hurts.
Don’t get me wrong. I’m grateful that I can still function. I’m grateful that I can plant flowers and cook a delicious and nutritious meal. But this kind of rheuma flare wears a person down. It goes on and on. Days. Nights. Weeks. Once in a while there’s a short respite; I’ve gone half a day before I even noticed that my hands didn’t hurt. The constant pain, as low-level and therefore dismissible as it is, starts coloring everything in dark tints and tones of reddish-gray. My mood shifts from good to neutral to bad. I see the gifts the world presents to me, but I can’t conjure up more than a disinterested shrug. My creativity wanes; I lose my motivation. My mouth has to be forced to smile.
I’d almost rather have the rheuma attack me the way it used to: Hard and mercilessly, causing pain that was literally overwhelming and that lasted 24 hours or three days, but then went away as quickly as it came on, leaving me tired and shaken but pain-free for a while. That rheuma was awful, but after a while it became familiar. I understood its limits – and my own.
But this … this constant, day-after-day-after-day, low-grade pain is sapping my strength. It’s making me whiney, and angry, and hopeless. Because I know that it’s not going to go away, except for brief moments here and there, and then it will be back, just the same. It’s my rheuma-dragon’s newest tactic; he’s taken up guerilla warfare. War by attrition. Winning by simply outlasting the enemy. Conventional tactics don’t work against it; you can’t beat it with soldiers and heavy artillery (powerful drugs and painkillers).
You have to get to the root of the problem and make changes there. (Lose weight. Eat mindfully. Move your body). It’s slow. It seems useless. But over time, it can work.
Heh. I just imagined my body as Northern Ireland during the Troubles. Take that, rheuma-dragon! You haven’t killed my imagination yet, you bugger!
This post isn’t a call for sympathy; most of you who are reading this are quite familiar with what I’m writing about. And you know, as I do, that even this won’t last forever, that I’ll feel better before long, that a good night’s sleep will renew my strength and courage, that tomorrow’s another day, another battle, another victory. Instead, I wrote this post to get the feelings into something tangible. Into words. To get them out of my mind and while I did, forget for a short while how hot, swollen, and sore my hands are.
I am sorry that you feeling so stiff and achy. I am dealing with my own stiffness and achiness today as well. RA is all about frustration Wren and often times, we have to continue on. We can’t break and we can never really plan for the next flare up. I know that it is hard when you see a sink full of dishes or piles of paperwork to do and you move no matter how much it hurts. I know because that has become the norm in my life. Often, when I have good days, I go out and enjoy them instead of staying home and trying to clean and do stuff that I do even when I feel like crap. Life is too short. RA teaches us the true meaning of grateful but it does not mean we don’t get to mourn sometimes. I hope you feel better soon and I am glad that putting these feelings in writing helped you.
BTW – I love the changes to your blog.
Thanks — I like the theme change, too, Lana. I’m still getting used to it, though … when I pull up RheumaBlog I keep doing a double-take, thinking, THIS isn’t my blog! Heheheh…
I know that you, of all my friends, know exactly what I’m talking about in this post. It’s so nice to have friends that truly do understand. It’s a relief, isn’t it. Anyway, I hope that tomorrow brings you one of those precious, less-painful or even pain-free days so you can thoroughly enjoy it and get the rest, physically and mentally, that you need. You’re always such an inspiration to me, you know?
I’m really sory you’re having a bad few days – with the flare and the work situation. But you still managed to write a wonderful post which will speak to so many. That’s pretty amazing stuff. Sending you get well soon wishes.
It is good to have a place to just put it all down, especially a place where people get it! I stop speaking about it at home (unless it’s really bad and I need help) because its the norm, so why bother. I do feel guilty on those rare good days though when I don’t notice until mid-day that it has been pain free – you think that would be the first thing we notice about the day. I love your writing, it’s so full of great description, I can’t but help be drawn in : ). Here’s to winning our daily battles!
My Mama has had a weekend like this. And she was so looking forward to the festivities. The fireworks took her mind off of the dogged pain a little bit, but it is terrible to see her face drawn and etched with exhaustion. So much pain that she wasn’t even able to watch Germany play Argentina in the quarterfinal match of the World Cup.
I can very much relate to most of this. I so wish I could cast a spell and relieve all of us.
Ugh – I hate that all-over, flu-y ache. I haven’t had much of the really severe, localized joint pain I used to have in childhood in many years. Now it’s just an all-over “ill” feeling, and in some ways, it’s worse.
I hope you start to feel better soon. I’m thinking of you.
You’ve been so quiet latley. I hope it wasn’t my stupid bus analogy that got you down. Those stinkers may not be hiring right now, but you’re still MY favorite writer, so don’t ever stop. We love ya.
The sympathy days, I hate them the most and yet need them the most to regroup, charge on using your analogy. I need them to humble me & remind me of what I manage to accomplish on the not so bad days. Is there ever really a good day with RA? I’ve not found one in 16 weeks. That’s right, 4 month flare that my doc can’t explain. Other than to say my Lupus and RA are tag teaming right now. Drugs, I wouldn’t wish these drugs on anyone. But, they do help. Granted, not as much as I like, but they do help. I feel your quiet and your pain. I offer you my ear and a gentle hug. I’m so glad to have found you. Hugs. Taz