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Monday, March 4, 2013

Life Sentence

I've had fibromyalgia since I was 19, and it's been flaring up lately. Fibro, for those not in the know, is a disease that causes widespread pain throughout the muscles and connective tissues and it is wrong. The first half of the word, fibro, comes from the Latin word for fibrous tissues. The latter half, myalgia, comes from the Greek words for muscle and pain. Latin and Greek can't live alongside each other like that. It would be anarchy. 
The symptoms I live with are pain throughout my neck, shoulders, and arms. On a good day it feels like you might feel after spending an afternoon playing tackle football. On an average day, it feels like the aches you get with the flu. On a bad day, it feels like you've been run over by a car (this I have on good authority seeing as I have fibromyalgia and was once hit by a car). There are a bunch of other symptoms that can go along with it, the worst - for me - being fatigue and insomnia. 
The first doctor who diagnosed me gave me the verdict, then handed me a sheet printed up from the Internet that essentially called my disorder a highly-specialized form of hypochondria.  Rather than being angry at being told my problems were all in my head, I threw myself into believing it was true. If the disorder was psychological in nature, after all, it wasn't really there, and it would go away if I could stop believing it was. It didn't; it got worse. 
The fact is that the majority of the medical community now accepts that the disorder exists and is medically treatable; though the efficacy of various treatments varies from person to person. I've found a combo of meds, exercise, good sleep, and mindfulness meditation that gets me through the day most of the time. However, with pain flaring and Jeremy and my trip to Europe looming, I went to the doctor to ask him to put me back in physical therapy. He suggested aquatic therapy and it's amazing. The therapy pool is so toasty warm and the exercise so low-impact, that it's literally less painful to me than lying in bed. Which is why I find it funny how so many of the other patients seem to hate it. I had the same experience in the physical therapy sessions I did several years back. Folks would complain that their doctors wouldn't "do anything," for the pain or didn't take their pain seriously. Many seem to be of the opinion that prescribing PT is the doctor's way of blowing them off. In physical therapy, every time the therapist left the room, half the room would start cheating - lowering resistance on machines, doing fewer reps, or just stop work altogether.
Back when I did regular PT, I thought this was just laziness - people wanting the easy way out, wanting to take a pill and feel all better. But this time around, I'm starting to wonder if I'm selling everybody short.
Maybe the reason folks resist therapy is that the treatment forces people to face the fact that this thing isn't going to go away on its own, that there's no magic pill that will fix things. Maybe therapy seems distasteful because it means accepting an illness or injury as a part of your life - something you'll have to work on and manage; that you'll have to learn to live with and make peace with the pain or else keep on suffering.

1 comment:

Janice said...

Thank you for writing this. I've seen you struggle with this and you do so with a grace and civility that would elude me. As always, if there is ever anything I can do to help (or help to distract!), please give me a call. :)
~Janice

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