52 Weeks of TS: Week 17

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 the first 16 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

The brain is often compared to a super computer — the body’s computer, which not even the smartest person has been able to duplicate. Computers get viruses that attack their systems, and just like a computer my brain has a virus called Tourette Syndrome. I’m not saying that Tourette syndrome is a virus, I’m just trying to explain how I feel. I feel like there is a virus attacking my computer/brain, and no one has developed an antivirus. Computer specialists find antiviruses for computers just as fast at the virus is released, but we are still here waiting for some type of fix for our body’s computer.

Doctors try to give us a pill. Is this our antivirus? Well let me tell you something, you had better get back to the drawing board because it’s not working. I’m on Week 4 of my medication trial, and honestly I don’t feel much of a difference. As I have described in the past few weeks, I have been off my normal schedule, working on many different and stressful freelance jobs.

This week I am finally starting to get my normal schedule back and this is also the week that I have reached my full-prescribed dosage of my Klonopin. Three .5 mg pills a day, one when I wake up, one in the afternoon, and one at bedtime. Guess what? I feel the same, I’m still as anxious as usual, and crazy stressed out.

I was somewhat hopeful that this new medication regimen would relax me without making me into a walking zombie. I’d love to be more relaxed but I really think it is impossible with anxiety disorder, and I’m really getting sick of people telling me to, “Just relax!” I swear one more person tells me to relax, I’m going to punch them in the face.

Imagine you’re stuck in traffic on your way to the airport and you’re cutting it close to missing your flight — that’s how I feel. Imagine you’re strapped to a bungee cord about to jump over a bridge to the rocky cliffs below — that’s how I feel. Imagine that second before you’re about to get into a car accident — that’s how I feel. It’s a non-stop nagging feeling that won’t go away. Twenty-four hours a day, I’m always worried.

I take my morning pill and get on the subway to work about an hour later. I feel it kick in, but it’s not doing much. Besides my normal subway freak-outs, I spent most of my 30-minute ride writing lists — lists of things that I have to, need to or even want to do, things that pop in my head. I pull out my phone and make lists — lists of things to do today, things to do this week or just things to do at some point. It drives me crazy, because the anxiety grows if I don’t finish all of the things on my list.

I had a friend this week tell me that he was worried that I’m headed for a breaking point. Am I? Thanks now I have anxiety that I’m going to have a nervous breakdown. He also told me that he thought my tics were getting worse. I know over the past few years they have been getting a little worse, but I explained to him what he is seeing is not the tics getting worse.

What he has been seeing is me being more comfortable around him and more comfortable in my own skin. I have TS and I’m trying not to hide it anymore. This is who I am, except me, or back off. I’m just trying to be more open about myself and not spend my life suppressing my tics.

Last week I posted a very interesting entry. It was not so much about my week, but more about a four-hour bus ride to Boston. This will be something that I will never do again. I did it, I survived, but would rather not put myself in that situation again. Wednesday I did make it back to New York, but this time I took my much more approved form of travel — flying. I know it sounds crazy that I would rather be up in the air than on a bus, I don’t understand.

Actually, I guess that’s TS, I don’t understand much of what I do. I’m still learning and learn more every day. A funny thing did happen on the flight back. A gentleman sat to the right of me and I turned to him and said, “Just wanted to let you know I have Tourette syndrome, so don’t mind my twitching”.

I think this got me very close to being kicked of the flight and put on the no-fly list. The gentleman looked at me extremely confused and said, “What?!” I repeated myself and with great relief and told me he thought I said, “I am threatening, so don’t mind the ticking”. Imaging trying to explain that to the TSA, and I’m not talking about the TSA that I’m on the board of.

I’m glad to be back at home with my husband. Don’t get me wrong, I love some time away from him, but he is one of my biggest supporters. I know he has a weird way of showing it but it does come out every once in a while. Some of these times are at night. We all know the worst time for our tics is at night because we have spent all day suppressing them.

If it’s a really bad day for me, and my tics are bad he rubs my back to try to calm me down. It can be so frustrating lying in bed and you just can’t control your body. You just can’t lie still. I think he sees this and maybe feels my pain and he does what he can to help.

I look at my life, and besides having this computer virus in my bodies computer, my life is not half bad. I have a great support group of friends, family, and my husband. I’m sure if we all take a long hard look at ourselves, we all have great people in our lives that understand us and that we can talk to. I also have you, my readers.

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

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