The official blog of Susan Landis-Steward, writer of whatever she likes, and co-founder of Puddletown Publishing Group

Posts tagged ‘fibro’

Fibro Report…As If You Wanted to Know

People talk about having “raw nerves” and that’s as apt a description of fibromyalgia as I can think of.  Your nerves are so raw that, instead of being nice little insular beings,  they are able to talk to each other in a neuromuscular game of telephone. The message sent is seldom the message received. A nerve starts a conversation saying “ouch” and by the time it hits the optic nerve it says “close me.” Hence today’s problem. I am stiff, sore, can barely move, and all I want to do is close my eyes. Good thing I only had to go to the post office, less than 1/2 mile away. There is no way I could have walked it, just too much pain and too much rain. But I was able to drive there and back and keep my eyes open, barely. It’s not that I’m tired, although there is that as well. It’s just that when I get this bad, the eyes flat out refuse to take in sensory information. As I write, I find myself typing by touch with my eyes closed. And I have to struggle to make my eyes focus to read anything. Which is sad as I have a new book.  My guess is there is “no knitting for you” at my meeting tonight, too. Bummer.

All this because of the convergence of working really hard for the party this past weekend with the rain and cold I woke to today. The brain is such a funny thing. It clops along, doing all the things it should, day in and day out, for many years. Then it starts to go. In my case, it was my first death that did me in. I died on the operating table, minor surgery, and my brain was oxygen deprived for a short time while they jump started me and then forced me to learn to breathe on my own again over the next several hours.  Just long enough to do minor damage. I lost my sense of direction and I got this lovely parting gift of fibromyalgia. So now I have no sense of where I am in space but it hurts to be here anyway.  I can now get lost finding my way home from church but I seldom feel like leaving the house so it really doesn’t matter a lot. I have Jenny, she-who-will-drive-anywhere, as my personal chauffeur and I work in a home office. I can shop on the internet, I have both a cell phone and a landline to keep me connected, and I am an introvert. The furthest I need to go for most of my social life is about 10 minutes from here. For the most part, I do well.

And there are drugs. It’s odd, just like fibro is odd, that many of the drugs are really drugs for other things. Treating it is a matter of treating symptoms, sometimes with drugs meant to treat other things. Example: I take Parkinsons drugs to treat one of the sleep disorders, anti-psychotics to treat another, and an anti-depressant to treat the pain. It’s like the whole brain turned into fried noodles and now nothing, including the drugs, works the way it should.

But some days, like today, remind me that the suicide rate is quite high for folks with this crap. Now don’t freak. I’m not suicidal. But on days like today it’s hard to take it one day at a time. This is one of those shitty days when I am reminded that a) fibro won’t kill me and b) sometimes I wish it would. And, unfortunately, it will never go away. Although I look forward to summer because it’s almost like being remission for a few months.

A friend says I should try living gluten- and corn- free. I think I’m going to give it a try. This is ridiculous.

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