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Tourette’s keeps fighting!

I haven’t written a post on here for an absurdly long time. I think that’s because everything was sort of just going quite well, and my tics had been really on the down low for ages. Quite frankly, there were no incidents to spark the inspiration for a post.

Now the fact that I am here again shows that nothing lasts forever, and my tics for the last week have been worse than I ever remember them being, even before I was on tablets! Quite annoyingly this happened as I was talking to some friends and said, “Yeah, my tics have been really quiet recently. It’s great!”

Tourette’s clearly didn’t want to be forgotten about, so two days later in a (tutor-less) drama tutorial I was twitching badly, hitting myself in the throat and saying my new constant vocal tic: “Achoo!”. But then, out of nowhere, I dropped the f-bomb. I didn’t know what to do. My group giggled, and I did initially because it was odd, and I don’t have coprolalia but this incident begged to differ.

Later on our tutor actually came to try and offer us some guidance, and I was still ticcing away, not subtly punching myself in the neck or face, and again accidentally swore. My tutor then just said “Language!” in a condescending, exasperated tone. And that was that.

I left the tutorial (luckily I had been leading them outside where I drama group wanted our performance to start with another girl, so she stayed and I ran away) and was left as a mess if tears wondering what on earth I was going to do.

Luckily for me, the small group I am working with for drama are absolutely lovely and gave me hugs and made sure I was OK (one even went with me to sit in a toilet while I calmed down), and they all seemed completely baffled that a tutor that I have had for over a year could even consider saying that to me.

I think that one simple remark upset me so much because what had come out of my mouth had upset me enough, without having someone else’s condescension piled up on top of that as well. The frustration of not controlling what comes out of me reappeared that day, and it was like being diagnosed all over again, where I started to question what I would do now and how this would affect me from now on.

A main concern on that day was that I was going to work, which for me is an after-school club for 4-to-7-year-olds. As I have never had bad tics while working with these children I had no idea what I was going to do if my tics were bad, let alone if they were offensive. Luckily, I was fine by the afternoon, and I was able to have a relaxing evening watching Glee with my lovely housemate.

From then on, my tics have been very bad. On Friday night we had a party at our student house, and I had to keep taking tic breaks in my bedroom at the beginning of the night. By the end of the night I wasn’t even able to hold tics in to allow myself to go and have a break. This night I had a couple of coprolalic tics as well. They just happened. Luckily the party was enough fun so that it didn’t bother me.

I’m hoping my tics calm down again soon, as hitting myself is more annoying than it is painful, and I would like to be able to sit still(ish) and quiet(ish) in lectures again.

One thing that has helped me through last week, aside from very supportive peers, has been reading Jessica Thom’s “Welcome To Biscuitland,” which is such a super book about Jess’s life, and living with Tourette Syndrome.

When I was feeling bad it was great (in a strange way) to read about her upsetting experiences as well, as I felt less lonely reading something where someone had gone through very similar things to me. But the best part of the book is reading all the positive experiences she has, not just despite her tics but because of them as well.

It was also comforting to read that she works with children, and she is accepted in this. Hopefully reading this book will help me keep positive, because the one thing I don’t want to do is increase my anxiety levels, and go back to when I felt sick all the time, and refused to be in public on my own because that was the most disabling affect Tourette’s has ever had on me.

I have to remember the distance I have come.

AislingL

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