all about that brace

Lo these many years ago (all right, sometime in the early oughties), I bought a bodice at the Sterling Renaissance Faire.

It was, and is, a serviceable piece. It isn’t very period, especially considering I wear it over, not under, my clothes, but my silhouette does flatten appropriately when I wear it. I never learned to spiral-lace; someday I’ll find the right YouTube tutorial.

Today is not that day. Today is a chilly autumn day, not even 50 degrees F outside, and my whole body knows it. Thus, today is the day I test this wonderful non-period bodice as a mid-back brace.

“But, Mari! Why don’t you get an actual brace? Surely one could be prescribed.”

HAH.

The last thing my GP did before going on maternity leave was sign some paperwork for me. I swear this is relevant. She signed paperwork for ACCES-VR, which, I think I might actually need new paperwork because it’s been some time. Anhedonia bites.

That paperwork discussed my limitations in the workplace. One of them, as I spent September discovering, is how long I can(‘t) sit in a standard-issue office chair.

“So get a lumbar chair,” she suggested.

“That’s not where it hurts,” I said, more or less. Obviously I am paraphrasing. Very few people have the kind of recall to accurately reproduce dialogue. The point is that my lumbar spine is the last thing to go when I’m sitting at a desk. By that point, I need to stop and move.

You see, I’m a short woman. I’m 4’11”, and while I have long enough limbs for my height, I still need help reaching things like brakes in a car or, you know, the floor. Desks sit higher than I can manage. The last time I asked for help, I got a manky old cardboard box. Yep, that workplace was really invested in me! And I’ve seen those lumbar chairs for myself. I am a very proportional 4’11”, so the lump that’s meant to cushion my lower back jabs me too high. It’s not pretty.

Compounding this problem is the matter of sitting upright. It exhausts me fast. Could physical therapy build my muscles sufficiently to help without first making me worse? Sure, if I had a physio who understood the limitations of fibro/CFS, to wit: Stop very short of normal. We tend to roll low on endurance. I tried a course of aquatherapy and that’s why it failed. You can’t put us through the same paces as a hip replacement patient or a heart patient. You’ve got to account for the nature of the beast.

What hurts, when I hurt in the back and sides, is my thorax. My ribs and mid-spine hate me well before the end of the day. I am most comfortable with something to lean into, something with give that will cradle my torso and help me sit upright. Failing that, artificial stiffening of said t. might be the best way to go: it will force me out of my natural slouch.

I also sit with my legs up and under me most often because there is no out straight. (In case you’re wondering, this means I do deal with mild contracture.) The best sit for me is the tailor-sit, again on something soft because I haven’t enough fat in my bottom to cushion my nerves and bones. Honestly, I should consider getting a cheap folding wheelchair and using that: it’s portable, it provides for legs up and out, and it might just remind the people around me that I have physical limitations, if not as severe as the wheelchair implies.

But before I do that, I want to try bracing my ribs and T-spine, maybe extending into the C-spine area/over the shoulders for stability. This canvas contraption I am wearing is a start, but I can already feel it’s not enough. It has no boning. I pancake in on myself.

And this I cannot do alone. I would like my physician to help me, to see that it is a legitimate issue. Does she? Hell. Perhaps that means it’s time to find someone who does understand. Perhaps I need to consider getting a fibro doc and only going to my GP for normal GP things, like checkups and sore throats. The right doctor is the doctor who thinks as outside the box as I do, because my mother was necessity and I am invention. The best solution to a problem is the one that works. The one that works is the one a person will use.

So. Can we maybe actually consider what I’ve identified as my needs, instead of shoving me into an equation and trying to balance me? I don’t think I’ve met any two of us whose fibro/CFS expresses itself in the same way precisely. Some medicate, some don’t, some can’t. Some go to PT, some don’t, some can’t. And when you can’t medicate and PT’s been useless to you, yeah, you start to look at solutions that apply to non-fibro, non-CFS pain like yours.

Like a simple freaking back brace. Ye gods.

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