I try to be positive about my Tourette's. But sometimes the dark side of TS creeps in and you suddenly realise that you are alone with the condition. It's hard being so positive about it all of the time. I mostly deal with positive tics and gestures but they turn on me and I find myself giving people the middle finger. I am in pain sometimes from a day of neck tics or I can't sleep because I am sitting up and down in the night. Or I'm just generally exhausted thinking about it and stopping tics.
TS is a spectrum condition which means that each person has a unique experience. More and more research shows that TS isn't just about the tics it's the internal stuff that goes on. The mind stuff.
Stress plays a big part in my TS, heightened emotions, and over stimulation. Sometimes it can feel completely random, sometimes more predictable.
Dwindling self confidence, anxiety and the comments people make create a cocktail of daily stresses for me and it can be hard to motivate myself, I can be flakey, I don't always see things through and I get exhausted.
The tics aren't always the worse part for me. I can hide them some of the time by wriggling my toes and nose, squeezing parts of my body, or using my hands a lot when I'm talking.
Some days I forget I have TS. Other days I can't ignore it. Sleep can be hard, social situations and work can be really tricky. But other times it can be hilarious and I share jokes with friends about it.
Even though I am talking now about the darker side of the condition, I find it hard not to be positive about it. I have had the most incredible 6 months of meeting new people, creating movies, and travelling to different cities. I have days where I am upset by it...but I wouldn't change the direction my life is going in.
Tonight I whooped, cried, shook, wailed like a monkey and now I am sat in bed wondering what tomorrow will be like!?....
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