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One of those days where I just hate Tourette’s

I’ve been having a rough couple of days with my tics. They weren’t all that bad for a little bit, but with the waxing and waning of Tourette’s you always know that with a period of time where your tics aren’t all that bad you also get a period of time when your tics get bad again. Sorry if this post isn’t very well-written, my brain is just fried and tired, but I still felt the need to post this.

Anyway, yesterday I was having a sensory reaction/tic — I’m not really sure what it is, truthfully — where I just scratch everywhere on my body really, really hard. I will just have this horribly uncomfortable feeling where I feel like I need to climb out of my own skin when this is going on, too, so it’s really not very fun at all.

So I’ve been itching and scratching everywhere, and ticcing A LOT, too. It’s like my body has been having a meltdown the past two days. I’ve ended up falling on the floor and writhing around quite a few times between yesterday and today because of my tics. It makes me feel really silly to be laying on the floor ticcing and squirming around. Right now, my neck and head really hurt and feel uncomfortable from all the tics I’ve been having — and all the scratching, too.

When my tics are this bad and when I feel like I constantly want to climb out of my own skin, I feel like I just can’t be very productive because every time I go to write or do homework or read I just start ticcing more, start scratching more and get really frustrated and end up having a meltdown.

I just turned in an essay that I had to write over the weekend, and I feel like the essay is just pure junk because I had such trouble writing it and getting my thoughts onto the paper. I usually am a good writer and take a lot of pride in my academic work, which is why it upsets me so much that I am turning in an essay that I couldn’t feel any less proud of.

This is one of those times where I really hate having Tourette’s. Most of the time, I don’t hate it. Most of the time, I live with it and go on with my life and try to think about all the good things Tourette’s has brought to me, such as my amazing Camp Twitch and Shout family, my work in the Tourette’s research lab and my involvement in the Missouri TSA.

Right now, though, I’m just feeling down and like my brain is scrambled and like I can’t think straight. It’s hard to think straight when you feel like your entire body is filled with itching powder and like you just want to go and get a new body — a body that doesn’t move and make noises and feel so uncomfortable like this one, a body that can handle the sensory stimuli of the outside world without shutting down and throwing a temper tantrum like a 5-year-old.

I guess trading in this body for a new one isn’t going to happen, but at least I know I’m not the only one who has to deal with this. I have much love and support from the people around me who don’t have Tourette’s and much love and support from my Camp Twitch and Shout family, and others I know who do have Tourette’s.

In the meantime, I’m using my strategies to try to calm my tics down, such as trying as much as I can to stay focused on other things, trying to keep my stress and frustration level down, and trying to get enough sleep, food and water in my system.

I also do some random things that I have found sometimes helps, such as laying under my weighted blanket, putting on comfy and loose clothes whenever possible, drinking milk to help me calm down, and putting cold compresses on my head.

RuthieP

One Comment

  1. That’s exactly how I feel right now. One of my recent tics is clenching my throat and digging my toes in my shoes. My throat feels so raw as if I had the flu. Today I feel fed up with it. Just want to scream aha.

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