My focal dystonia started 15 years ago and I’m still mourning the life I never had.
This post is, admittedly, a vent more than anything. Sorry.
My focal hand dystonia started when I was 14, completely out of the blue. It mainly affects my writing & typing, but my arm and shoulders hurt constantly from the tensing and general fatigue that we all know and love. I have general tremor too, and every extra bad day makes me feel like maybe it’s spreading to the other side, maybe I’ll eventually be unable to do normal things, etc. I’m in a constant state of panic and general pain.
I had sushi with a friend the other day and was self conscious that she’d notice the shaking while I was using chopsticks. I tense up and panic when asked to sign receipts in front of others. I had to fill out a form today that was hand-written only, and I had to ask my (wonderful) partner if he could do a lot of it for me to try to mitigate the frustration and pain that comes from forcing it.
Every day is a stressor, which feeds into the severity of the dystonia. I’m 29 and feel like I’m destined to be in pain every single day for the rest of my life, and that just sucks. Frankly, it just sucks, and I’m irritated today and needed to write it out to people who I know (unfortunately) get it.
I’ve tried Botox and various medications and nothing has made it easier. It just isn’t responsive to the current treatments and I feel like a normal life slipped away at 14. I’m mourning a life of less pain & more ability/less dependency on others that I never even really had.