Wednesday, June 24, 2009

DEAR DIARY: Ring in the New Year

The first dystonic storm of 2009, started and ended strange. I almost think that this one was psychosomatic.

I was online looking up of all things.. 'dystonia' on a mini computer with a toggle stick (I think its called) I have had the computer for three months and spent 3-4 hours a day on it. Well that night, as I leisurely browsed the internet after a very busy day I felt a familiar tingle in my right hand.

Oh NO! I thought to myself.

I immediately stopped what I was doing and layed down. Maybe If I went to bed before it spread Id be fine.

Not so much luck with that. I woke up with my hand cramped into its familiar C shape. Mocking me with its limpness. To add further insult a spasmic feeling shot through my forearm.


I moved faster to drive the kids to school. I knew it was only going to be a mater of minutes before my whole arm was spasming and and I was exhausted.

I drive the kids to school, left handed, and immediately go home and nap. I was going to end this with sleep.

Ahh, but this one was persistent, I woke up with two arthritic fingers, a visually spasming right hand, a spasmic right forearm, sore and sensitive triceps, tight shoulders, a spasmic right foot, sore right hip, weak right knee, sensitive right thigh and a freezing right foot and hand.


I was just gonna have to wait this one out.

The next day was a weekend, and thankfully, my father who had seen this happen before was home to cook the kids dinner. I stayed awake long enough to eat and tuck the children in, then I once again went to sleep..Hey it wasnt like I could do anything else..It hurt to do anything... walk, sit up, use my right hand in any manner... and my right extremities were sooooo cold.

I stayed home all of day 2 alternating between sleeping and eating, but by day 3 I was fed up.

I went online.. keyword "stop a dystonic storm". I was considering a warm bath, (my hand was so cold) cup of caffeine, and some prescription muscle relaxant samples I had from a 2007 episode.

Then I got scared..what if they made it worse?

"THATs IT! I have a LIFE! I'm tired of you spasming - I want my hand back.. I know my brain is controlling this! QUIT IT!"

1 hour later my hand was warm again. I could move my fingers. I could stand up on my hip and straighten my knee. I could wiggle my right toes!

It was over!My first dystonic storm of 2009..

All 60 hours of it was over.


  1. THANK YOU. This is what it's like for me, but my parents have so little knowledge about this or desire to learn, that they have no understanding at all. Sometimes it's only like this for me for a few hours, but sometimes it lasts days and I'm yelled at for skipping a class because of it or wanting to stay home from work.

    I honestly went through a full day of work at a retail store yesterday with my right hand, arm, shoulder, hip, and foot just screaming at me. This post totally captured how impossible that can be.

  2. Its funny because I wrote this for myself when it happened. So that I would remember what happened. (At that time my attacks were infrequent) But four months later I re-read it and thought.. I should share this. Someone might be able to relate. I am so happy that it was helpful for you!


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