Dystonia Diary

This is what it's like to have cervical dystonia - the good, the bad, and the ugly. Actually, there's nothing good about it.

Saturday, May 20, 2006


Since my 16 Botox shots, I expected to have great pain relief. And I expected to be able to hold my head more-or-less straight while walking, without having to use my hand. I also expected to get a good night's sleep. Well, about a month later, I have great pain relief.

I'd do just about anything now to be able to sleep more than 4 hours straight. I wake up about 2 - 4 hours after I fall asleep, then stay awake for an hour or two, or more, fall asleep for a few minutes - maybe almost an hour - then wake up again for an hour or so...etc., etc. It takes me 11 hours to get about 7 hours of sleep - if I'm lucky.

Another disapointment was my last Doc appointment. He was running late, which can happen. The nurse took my information (what's my level of pain, how am I sleeping, etc.) I told her about my sleep problem, and she said she'd ask the Doc about it. When I saw him, he examined my neck, we discussed the stiffness, pain relief, and deviation briefly, then he said "ok, I'll see you in about a month then". And that was it. So I get to spend another month with sleep problems.

Still another disapointment is my so-called "friends". The one I though was my best friend loaned me a book in Jan 2005. (I may have told this story before). Anyway, she shops at the store where I work, and occasionally I hear that she shopped and said that she means to stop by and visit me (and pick up her book), but she's just been so busy. She never did stop by. To spare her the hassle, I gave the book to a co-worker who sees my "friend" regularly when she shops. Now she won't have to trouble herself with the 3 minute drive from the store to my home. Actually, I haven't seen any of my former friends in a few months, even though I sometimes hear that they said "hi" and they'll stop by sometime. Right. I don't even care anymore.

Actually I'm glad I don't see them anymore. They look at me with sadness and pity, even when I tell them I'm doing better. They know it'll never really "get better", because I told them that much. That was a mistake. I never told them - or any of my co-workers or customers - that Dystonia is an "incurable neurological disorder", because that would just make things worse. I get enough looks of pity as it is just for my odd appearance. I don't want anyone saying "Oh you poor baby". I despise pity.

It's gotten to the point that I try to avoid eye contact as much as possible. I don't even look at peoples' faces when I'm out in public, just in case I catch someone looking at me with the "oh that poor thing" look. As much as I miss having someone to talk to, I hate the way they look at me. There's no way I'll ever be able to talk about dystonia with them without getting their condescending pity. Good thing I have the internet. I don't know what I'd do without it.