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

Posts tagged ‘crusaders’

My Apologies

I want to let my Crusader pals know I haven’t forgotten about them. It’s not that I don’t care, it’s just been a rough couple of weeks. Too much work, too much drama, and then Wonder Babe was here. Right now, as we get ready for our first book launch, the Puddletowners are still working day jobs and publishing nights and weekends. I don’t take a break until about now, 2 am.

So I’ve read a few blogs, made a couple of comments, and now I’m going to do a quick post and follow it with bed.

To make it worse, we had snow. I love snow. But I have fibromyalgia and fibro hates cold. Add in stress and overwork, and most of my “free” time goes to naps.

Fibromyalgia, contrary to old theories that said it was musculo-skeletal, is actually a malfunction of the central nervous system. In layperson’s terms, the only way I can explain it, it’s like having your nerves gossiping with one another, sort of a brain game of telephone. The message gets sent, gets changed, and ends up in the wrong place. So over-stimulation, for example, travels to, say, your hip, and suddenly you have severe pain. The next day, or even the next hour, it’s in your shoulder, your back, your neck, your other hip. I had one day last week when it was my whole left side. Your sleep center also gets messed up and many people with FMS, myself included, have numerous sleep disorders. In my case, it means several psychotropic drugs and other things are required to help me fall asleep, stay asleep, breathe while I sleep, not kick other people out of bed, and to keep me from acting out my dreams. Seven, count them, seven sleep disorders afflict me. So many I can’t even remember the names of a couple of them.

Barometric pressure affects the CNS, although I don’t understand how. So people with FMS feel horrible, and flare, anytime the barometer swings. Good or bad, weather changes make us hurt. I live for summer, when I have a couple of good months (I live in Oregon. Summer is not a full season.) I’ve threatened to move south for the winter.

Because FMS folks are always in pain, we take heavy doses of nasty painkillers. I really should be taking narcotics, but so far I’ve been resisting since I seem to be quite susceptible to them. They turn me into a moron. However, a friend and fellow FMS person is trying to convince me that the time has come. She assures me that I will get used to them and the cognitive fog will lift. Since FMS has its own cognitive problems, called fibro fog, taking drugs that cause further cognitive issues frightens me.

Anyway, this may be TMI, but I’m trying to educate the world on how FMS really affects its sufferers. As I often tell people, FMS won’t kill you, but some days you wish it would.


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