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 31 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
This week I have been doing a lot of thinking; well, I guess my brain is always thinking, but this week I guess, I’ve been listening to my thoughts more. I’ve been trying to listen and understand why my body does the things it does. Even at 37 years old, my body still confuses me.
I’ve been doing the back and forth trips between New York City and Martha’s Vineyard. In the beginnings of my time in Martha’s Vineyard, I said my anxiety levels were at an all time low, but my tics had stayed the same. With all the back and forth trips, I have realized that my tics might have calmed down a bit in more relaxing situations.
There is always something going on in my head, whether it’s my OCD, my anxiety, tics or ADHD. It often feels like Grand Central in my head, so sometimes it’s hard to notice if something has calmed down, like my tics. Sometimes you just don’t realize when the tics are calm outside of a stressful situation, until you’re back in a stressful situation.
For the most part, people don’t realize I have TS, unless they are with me later in the day or early evening when my body is tired of suppressing. My TS affects me in many ways, but I would probably have to say the actual tics are on the bottom of the scale. Even though I tic throughout the whole day, they are usually very mild. It’s really all of the underlying disorders that affect me almost every moment of the day.
There is usually not a moment in the day that there is not some sort of OCD thought racing through my head, which then triggers the anxiety. I know I need to pay more attention to my triggers, and focus on what helps. I take my Klonopin, but I’m beginning to wonder, how much is it really helping? I know the one mg that I take at night helps quiet my mind and helps me sleep, but I’m not sure how much the .5mg that I take in the morning is really helping.
When I first started taking the .5mg in the morning it would make me so zombie like, so I started taking it with a coffee to somewhat level me out. I think it’s time to cut out the coffee part of it. Within 10 minutes of drinking the coffee, the caffeine is racing through my blood stream, causing more anxiety feeling. HELLO, why am I taking something for anxiety, but mixing it with something that brings out my anxiety? It’s time to cut the caffeine.
I know in the past, I have said that I like my OCD, because my house is always clean, and my life seems in order, but is it? I have noticed that if I have to talk to someone about something important, I will obsess about it forever. I will go over the conversation in my head repeatedly, thinking about different outcomes. I feel like most people do this, but the extent of the conversation in my head can go on for days, which then once again causes more anxiety.
It’s hard to calm down the anxiety, but I have discussed this with other people with TS. Most people that I have talked with have said that at the end of the day, the way they try to relax is watching TV, or listening to music. This week I put a lot of thought into that. When I get home from work, I can find some relaxing comfort in zoning out in front of the TV. It takes my mind to another place.
However, music is a big part of my escape. Music really effects my emotions, if I’m angry, or agitated all I have to do is listen to some calming or happy go lucky music. I have the weirdest collection of music for a thirty-seven year-old guy. I listen to a lot of folk and pop music. If I’m depressed, I usually go straight to something harder, or even more dance type music to pull myself out of whatever funk I might be in.
A funny thing did happen this week, I was flying back to Martha’s Vineyard, and my flight was delayed. Oh my lord, I’m stuck in the airport waiting for a three hour delay. What a nightmare! I walked around listening to my calming music, and at one point, I had to use the bathroom. I don’t have that many issues using the bathroom in the airport because everything is automatic.
This is heaven, I can go in there and not touch one thing. I still had anxiety due to the flight delay, so my tics decided to accompany me to the bathroom. I was standing at the urinal minding my own business, when I realized the guy next to me kept looking at me. Out of the corner of my eye, I could see him giving me some weird confused look.
It was at that moment I realized that I kept doing my “hum” tic. It wasn’t until he walked away when I thought about it, I think he might have thought I was relieving myself in another way. With the way my “hum” tic sounds, I could see why he might think that, but nope, just had to pee.
This week, I’m going to cut out the caffeine, and try some music therapy. I really need to start focusing on my triggers. I’ve lived with these neighbors in my head for so long, I know what triggers them, and what calms them down. I really have to start paying attention to my body more, listen to it and understand it. Everybody with TS has different triggers, but if we listen to our bodies, maybe we can make life a little easier. We’re not going to find a cure ourselves, but would it be nice to make our days a little easier.
Until next week, “I’ll tic to you later.”