Ouch
For the first time in some years, I missed Krewe du Vieux. Why? Because I felt like shit. Why? Fibromyalgia. The aches, the stiffness, the idiosyncratic and wandering sharp pains, the mental fogginess, the molasses-in-your-ass fatigue all get worse when it’s about to rain, raining, cold, or, especially, cold after a rainy day. I feel like I have marbles in my feet. In some places, at some moments, my skin hurts. I didn’t want to subject Mister to blocks and a couple hours of groans, sharp intakes of breath, grimaces meant to look like smiles, and a walk that got slower and more ginger with each block.
The main problem with FM—you look just fine.
Fibromyalgia is an “invisible” disease/syndrome. No one can see or measure how your skin hurts or how you can barely digest even the blandest of foods or walk across carpet without deep pain. No one can understand how someone under 70 can be so stiff and so bound to comfort items like heating pads, hot water bottles, seat cushions, wool socks, Epsom salts. With chronic insomnia, some days you truly look like shit rewarmed and served cold. With FM, no such luck.
It’s not that it was impossible for me to go. I could’ve. But it would’ve been less fun for Mister— he’d be looking out for me, concerned and/or solicitous, leaving earlier than he would alone—and I would’ve suffered not only last night but for the next day, 2 or 3, possibly a week. Can’t afford that right now.
And though teaching only 2 days a week is getting harder and harder, because I am still capable of thought, mostly, and am able to move, I am not eligible for any kind of disability. So I trudge through, spend more time in bed than I am comfortable with, and try not to push myself so far that bed is the only place I can be for a few days. Or more. With FM, “just do it” can mean a flare-up that keeps you in bed for days and that you can’t shake for months. I know this, all too well.
National Fibromyalgia Association
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photo courtesy of Migraine Chick, used under this Creative Commons license
Big ((((((hugs)))))) from me to you. Ya gotta do whatcha gotta do. Great thing about the interwebs: it is a well-documented parade.
Thanks for the hugs. And yeah—I get to see KdV without the cold and near-hangover next day.
It’s a day, though, I wish I could eat lying down…….
What you REALLY need is an elegant stretcher with lots of strapping young interns carrying you through the streets to the parades a la Roman Empire-type excess. Then everyone will REALLY have cause to say “WHO DAT?”
Figures—I’m looking for the wrong type of intern. No wonder I can’t get shit done.
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I feel your pain. I suffer daily from it…only thing that helps me (besides opiates) is swimming and constant movement.