The ritual

This morning:

I wake up and, as I have since I was a child, immediately sit up and swing my legs off the bed. Morning is here—things to do!

Ow. Ow ow ow! The large joints in my shoulders, elbows, hips and knees growl in outrage at my sudden change in position. How dare I move without  warning!

In my mind, I growl back at them. And then I sigh. Right. I’m stiff from spending the long night in the basically the same position. Nothing new here, move along. I look at my hands. Yes, they’re swollen ‘round the knuckles.

This is my newish normal. I say “newish” because this pronounced stiffness in the morning only started about five years ago. Back then, I was only a little stiff in the morning. The first five minutes or so. But over the years it’s gotten steadily worse. I wonder if I’ll be able to get out of bed at all ten years from now.

But I don’t like to think about that. I’m taking powerful anti-rheumatoid arthritis drugs. Handfuls twice a day, every day. And there are more of them out there that I haven’t tried yet. They’re waiting in the wings, enthusiastic understudies, ready to step in should the principals stumble and fall.

Denial is a wonderful coping tool, isn’t it? Don’t let anyone tell you otherwise.

My mornings, while stiff and sore, are different to how they were when the rheuma-dragon first started gnawing on my joints, 26 years-or-so ago. Back then, my body wasn’t stiff in the mornings, but I often woke with some major joint or other badly flared. On top of that, putting my weight on my feet to walk first thing in the morning was always agonizing. I’d gimp grimly to the bathroom, teeth gritted, to get ready for what promised to be a very long day.

Now, all these years later, my whole body stiffens up overnight. I shouldn’t be surprised—my joints stiffen up these days every time I stop moving them for more than a couple of minutes. Yes, I’m a lot older now. But this daily physical impairment isn’t a a result of age alone.

It would be one thing if my joints were just stiff. But moving them hurts. And for an hour after rising—at least an hour—it hurts to move my whole body. It hurts just to stand in one place, let alone walk around.

But back to this morning. I go down the stairs slowly and carefully, gripping the banister with my left hand as tightly as I can. If for some reason I happen to trip and fall—a cat runs between my feet, maybe, or I put a gimpy foot too close to the edge of the riser and slip—my grip will not save me. My hand won’t hold. By the time I’ve tumbled down the stairs, I’ll also have wrenched every tender, grumbling joint in that hand.

In the kitchen, I take my morning meds, get my coffee, give Mouse the cat a couple of treats—she’s always right there, asking for treats and making me smile in spite of myself—and stump over to my favorite armchair. I sink down into it, relishing the softness of the upholstery and sighing with relief as my weight shifts off my complaining feet and legs and resettles on my behind. Whew!

(Let me pause here for a moment to say: I’m very aware of how lucky I really am. There are so many people with autoimmune inflammatory arthritis who cannot stand, cannot walk,  and cannot grip with their hands at all. They cope with far more pain every day than I do, yet they just get on with life.  I am awed. Humbled.)

A little later …

It’s amazing what a brief shower can do. As my muscles warm and relax under the spray, I do some gentle stretching and range-of-motion exercises.  But “exercises” is a silly word for them; they aren’t really that. I just force coax all my major joints—including the ones in my back and neck—forward and back, up and down, left and right a few times. Sometimes I have to grit my teeth, but the warm, soothing water generally wins out over any discomfort. When it doesn’t, I stop that nonsense right now.

I get out of the shower and pat dry carefully. My hands are still tender, even if they aren’t stiff anymore, and hanging onto the bath towel hurts. I dress without much trouble, though the bra clasps irk my fingers. Still, quickly done. Then I clean my teeth, grateful for my 10-year-old Sonicare® electric toothbrush. A tight grip isn’t required to wield it, and it’s not heavy. Technology at its finest! And if that’s not enough, that blurring, buzzing little brush also encourages any low-life gingivitis and periodontal disease that might think about settling in my neighborhood to move along.

I brush my hair this way and that, hoping I can get away without styling it this morning. Ugh. Nope—sleeping has made it stick out here and there without any sort of symmetry. Dang. I plug in my hair dryer, grab a brush and get started.

I bought a very small, very light hair dryer several years ago, when my hands first began their stiff-and-sore-act every morning. My old one was way too heavy, and with my diminished hand-grip, “fumbling” is the only word I can think of to describe my styling method. Oh–and painful.

My little dryer is a much better choice. The only trouble now is turning and rolling the brush under the dryer’s blast of hot air. Ouch! Ow! Grrrr … I manage to tame my goofy hair eventually. Good enough. It’s Sunday. I’m not going anywhere today, and Mom and the cats don’t care if my hairstyle isn’t perfect.

Thank goodness.

And now it’s time to get my real start on the day. I have some freelance writing to finish, work that challenges me and brings in a few occasional dollars. That I really love researching and writing—and get to do it for money!—is a gift to me from the world, and believe me, I’m grateful for it.

I just hope my hands keep working.

P.S.   1. I’ve changed my background color back to black because, well, I like it that way.

2.  Please excuse the blizzard. WordPress is behind it, not me. I like it, sorta, but it does quickly become tiresome. Be patient. It will be gone on Jan. 1, 2014. ;)

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11 responses to “The ritual

  1. Sorry you’re suffering Wren – but glad you’re able to work! I like the new-look black blog – but yeah, the blizzard does get kinda tiresome – but it’s fun ’cause you can move it about with the mouse!!! (It’s great provided you’re not actually trying to read a blog post!!)

  2. Hi, Penguin! :D
    I wouldn’t really call it “suffering,” you know. Aggravating, frustrating, even tiresome, yes. But not suffering. I’ve quite a few notches on the pain scale to go before this daily soreness reaches the high numbers. But thank you for the kind thoughts, anyway. Hope you’re feeling good, too!

  3. As always, a beautiful post.

  4. Yes, I know all too well that horrible morning stiffness…some mornings it lasts longer than others, but it always seems to be there. I get up, move around, take a hot bath and sometimes do gentle yoga to get my joints fluid again. I agree with you, it’s aggravating, but I too realize how lucky I am to have my mobility. Hope you stay well.

  5. I am sorry you have such pain. I have the opposite situation. I sleep downstairs so getting upstairs, sometimes I look like an old woman. Shuffling along, bent over, going step by step so hear you. It takes me some time to loosen up to where I can go up and down the stairs looking like my “proper age”. But so far each day it happens and the day goes on! And each it happens is a GREAT DAY! Watch those stairs!!

    • Adrienne! Hi!
      Oh, jeez, I don’t know what I’d do if I had to start every morning going UPstairs! At least I get to go downhill. And you’re quite right: every day that we get up and get going and get on with things is a great day. Thank you!

  6. I wondered where the blizzard came from – I’ve seen it elsewhere too! Our local ski-resort webpage used to switch one on when it was actively snowing real snow up the mountain – that was nice but they stopped for some reason. But would everyone (from central Italy to blogs) please give us our snow back????? Pretty please nicely ;-) – we’re running short…
    Do any of you with morning stiffness use pred to deal with it? Though I think the version I use is not available in the USA yet, or if so, only just. Lodotra was developed by a German company for that purpose, you take a low dose at 10pm and it is released early morning before the cytokines that are thought to cause the stiffness set out for the day. There is no restriction on it only being used for RA here so my GP gave it me – and it has made such a difference to me: much lower dose, no side-effects I can identify (except possibly steady weight loss :-)
    I used to be terrified of stairs in the early days of PMR – falling down, crawling up on hands and knees. The day I took my first pred I got up 6 hours later and walked down and back up normally, not like a toddler. It was such a relief to be here in the flat – stairs are optional for exercise, there is a lift and the flat is on one level!

  7. Hi, Eileen!
    I’m so pleased you stopped in! Lodotra sounds like a godsend. I probably can’t take it (if it’s even available here in the US) if it’s a steroid–I have osteoporosis and my doc says no, as steroids cause bone thinning. But it sure sounds nice.
    My own home, up in the mountains, is all on one level. MUCH safer for early-morning gimping!
    I hope this finds you feeling well, m’dear. :)

  8. I have been on over 10mg/day of pred for the last four and a half years – and the dexascans done at the beginning and then 3 years later were to all intents and purposes identical and perfectly acceptable! I have taken calcium and vit D tablets for the entire time but no bisphosphates (which encourage calcium uptake into the bones). There are other drugs besides Fosomax and friends which do the same. It’s thought that Lodotra works at lower doses – and since it is released at the same time as your body is releasing cortisol anyway should leave you body plenty of time between doses without any pred in the blood. And in fact, only 40% of patients on pred develop osteoporosis…

    I look in almost every day Wren – so get your skates on a post a bit more!