52 Weeks of TS: Week 39

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 38 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Where is the bubble boy?! I am sick once again. Now I’ve just spent the whole week feeling miserable and obsessing on who and how I got sick. Ironically, before I got sick, I was able to use my extreme couponing abilities and I bought twenty bottles of hand sanitizer for 50 cents each. Even with the sanitizer, I still got sick, but at least I can keep bubble boy fully equipped.

Truthfully, if bubble boy did actually exist, I’d get more stares from walking around in a big bubble holding hand sanitizer and Lysol than I would for just my tics. Here we go, back into thoughts of agoraphobia, I will just never leave my house. Yet another impossible option.

How is it actually possible to be agoraphobic, when you live in NYC, you have to go to work, and you’re the person who runs the social group for the TSA-NYC? I guess what I really need to do is work on my anxiety. I know my anxiety is taking a toll on my immune system, but I’m at a point that I’m not sure what to do. I know there are things in my life that I should rid myself of, I can rid myself of some anxiety, but most of the causes of my anxiety I think I’m stuck with.

Speaking of the TSA-NYC social events, we had our Social Hour this past week. We have this the last week of every month, and I love it. It is a time to hang out with other people with TS in our area, but this week I really realized how hanging out with other people with TS really triggers my tics. I guess the alcohol doesn’t help, but even without the alcohol, I still am triggered.

For the most part, I can usually control my tics to a point, but while with other ticcers, I don’t. I’m not sure if it’s the comfort of being around people who understand what I’m going through, or just the increased social anxiety. This week I was actually embarrassed by my tics. When I’m out with them, my coprolalia comes out. Usually I can hide this in a whisper, but I was just screaming out my special words, especially if I hear the words.

That’s one of the problems, there are a couple of friends who know my tic words and they will say them, then I just scream them out. We all laugh jokingly, but the next morning I had such a feeling of shame. It’s not fun to be out at a crowded bar screaming out “peanut butter f—er” or “Hey.”

The “hey” tic isn’t that bad. That one I let out a lot throughout the day, but most people just think it’s a conversation starter. I do try to suppress this one until the right moment. I can easily walk into work, an elevator, or a room full of friends, and do the “hey” tic without anyone knowing it was just a tic. It’s one of those subtle ways I let my tics out without people knowing it’s a tic. While I talk, I can easily do my throat-clearing tic without people knowing it was a tic. I also move my shoulders and arms around a lot while talking to someone and people think I’m just very theatrical while I talk.

I do have to say, besides being sick, it was a semi-calm week. I’m glad to be back in the comfort of my own home, and back into my ritualistic daily. I know my ritualistic life can actually cause me more stress. It takes a lot out of you to wake up and do the same thing every day, the same way every day.

Right now, I’m feeling the need for change in my life. Change to reduce the amount of stress and anxiety that I go through in my day-to-day life. I think in this upcoming week, I’m going to take moves to change. I’m starting a new, reduced work schedule, which I hope will help with my anxiety. I think with my extra day off, that I’m going to look into a vitamin regimen, try to talk to a Chinese herbalist, and maybe discuss the possible outcomes of acupuncture.

I’m not saying I will actually get acupuncture, but it’s not going to hurt to discuss it with a professional. I have discussed this option a few times over the past many weeks, but never had the nerve to go through with it. My OCD just takes control, and I start thinking about where those needles have been before they are put into my body. I know that they have been sterilized, but still, they have been in someone else’s body. Ewwww!

Who knows, maybe it’s the season, or maybe I’m reflecting on all the brave kids at camp last week, but I think my life can be a lot more manageable than it is right now. Am I letting my TS control me, or am I controlling my TS? It’s a question that’s been racking my brain, or a question that I’m obsessing about. I can write and talk about what’s going on in my mind and body every week, but unless I do something about it, I’m not going to change it. I always say, “We have to open our mouths.”

We need to educate others about the realities of TS, but education starts with us. We also need to educate ourselves more about our own TS. I say I’m open about my TS, but I think the truth is there is still a small boy suffering inside me, the young Troye suffering and hiding. In these upcoming weeks that we near the end of my “52 Weeks of TS,” I’m going to work on changing myself, educating myself, and stop hiding.

Until next week, “I’ll tic to you later.”

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