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 25 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
Yep, Week 26. Wow, the year is halfway done, and so is 52 Weeks of TS. After all of the craziness of packing and dealing with identity theft last week, I’m glad this week started in a new setting. I’m in Martha’s Vineyard for the next two months to finish writing my book “A Day in the Life of Tourette Syndrome.”
It’s nice to be out of the hustle and bustle of NYC, and in a setting where I can try to relax. I have spent the last week doing a lot of writing and relaxing. I do have to say my anxiety level is at an all time low, but the tics are still the same. They might have gone down a little bit, but I really can’t say I’ve noticed much change.
I guess I have to face the fact that I’m really stuck this way. Sometimes it’s just so frustrating that I want to scream. I know I could be dealing with things a lot worse or diseases, but I still have to play the “Poor me card”. It’s hard, always dealing with stares, or having to explain yourself.
Even though I’m not in the crowded city of New York, I’m still surrounded by people. I’m in a house with six other people, which is very different from what I’m used to. There is always someone around, and not much alone time. I thrive on my alone time at home, and now I’m in a situation where I’m not going to get that It’s just something that I will have to deal with and acclimate to.
Most of the people I’m staying with are family, which is a good thing. If they were strangers, I’d probably go crazy. I don’t have to explain anything to them, they all know about my TS, and my crazy OCD’s. If I’m not writing, I’m probably cleaning some strange part of the house.
I was able to escape most of my anxiety, it’s nice to leave that back in New York, but along with the tics, my OCD also accompanied me to the vineyard. I’d like to think that I’m not afraid of death. It’s inevitable, it’s going to happen. If it happens, it happens, but here’s the question: If I’m not afraid of death, then why do all of my OCD’s revolve around death?
The kitchen has to be clean, otherwise the germs will spread and then I’ll get sick and die. I can’t touch anything on the subway, because it’s filled with germs that will kill me. I don’t know, but it’s just an interesting thought.
Since I am in a more relaxed state, I have been trying to be more active. The first day here, I went for a nice morning run with a friend. Do you know how hard it is to run with your head flinging around? It’s not too easy or fun, but I do have to say, I think my muscles were tired and my tics did calm down for a little while afterward. It wasn’t that long, but it did help a bit.
The next day I went and got my bicycle fixed so I could do some bike riding. That’s another difficult activity, riding around with your head still flinging around, but now I’m trying to hold the handlebars. My head ticcing just caused me to swerve around. I really want to do a lot of bike riding around, but I’m really going to have to make sure I am not on any busy roads. The nice thing was that I rode to the beach and chilled on the beach for a little while, and rode back.
There are people that tic when they’re asleep and some people don’t. I am one of the people that does not, as far as I know. There have been those times that I might be having a dream of a tic, and I actually tic and wake myself up, but that’s very rare. While I’m asleep it’s one of my favorite times, because for the most part I don’t tic in my dreams.
I was thinking about this a few weeks ago. Do I tic in my dreams or not? I have been trying to pay attention to my dreams, but as we all know, half the time you can’t remember your dreams once you’re awake. From what I can remember, I don’t think I do. It’s a strange thing, most of the time I don’t tic in my dreams, I don’t tic while I’m asleep.
What is going on while we are awake that we start going crazy. Then it gets you thinking, is this why half the medications the doctors put us on for TS, put us to sleep? I’ve been fortunate to not ever be put on any of these medications, but the stories I have heard makes me think twice.
The problem with most of the medications out there are not exactly for TS, but for some other condition. The medications, usually try to work with dopamine levels in our brain. Everyone is different and different things affect their dopamine levels in different ways. One medication or cocktail of medication might work for one person, but might have a complete opposite reaction on another person.
Alcohol is a substance that effect dopamine levels. I know some people who can have a couple drinks and it calms their tics down, and then there are the others who take one sip and tics come out in full force. I am one of those people whose tics go crazy. I’m not sure if it is in fact the dopamine levels, or if it’s the fact that it relaxes me, and I just don’t care.
Let’s hope this next week is as relaxing as the last. Let’s hope I get some work done, and learn more about myself. There are certain people in our lives that think they know us inside and out, but if you really think about it, TS or not, how well do we really know ourselves? Our bodies are constantly changing and I think we can continue learning about ourselves, so that’s a goal for me this week. Learn a bit more about myself. Let’s all do it.
Until next week, “I’ll tic to you later.”
