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 15 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
Here we go. I said last week that this week would be an interesting and special entry. I didn’t quit smoking once again, but I’m conquering some fears — or at least trying. I’m on a four-hour bus ride to Boston from New York for work. I have practically bathed in Purel and Lysol, and have taken extra Klonopin.
A gentleman sat down next to me and within about five minutes, I warned him I have TS, and besides the four-hour bus ride, he will also have to deal with my ticcing. He was actually very responsive and thanked me for my honesty. Suppression is usually our first agenda, but not today. I’m completely out of my comfort zone. There will be no suppression on this four-hour bus ride. I’m just pretty much praying he doesn’t start sneezing, or coughing.
I’ve done this ride dozens of time, but always in the comfort of my own car where I can tic with no problem. We’re ten minutes into the ride, and I have an overwhelming feeling to just burst out crying. We’re actually going to pass by my house in about 10 more minutes, and I’m trying to control the urge to just get off of the bus, get out, and go home, but I won’t. If I do that, I’m just giving in to my disability. I think I’m going to try to channel that super hero inside of me and make my way through this.
I’m trying to suppress my tics as much as I can, I mean I don’t want to punch the guy next to me. My neck shoulder and throat clearing are the ones I really can’t suppress, so those are the ones he has to deal with. In all honesty, I could of just triple dosed myself on Klonopin and passed out, but I think writing about my experience will be more interesting — especially for all of my readers.
Speaking of Klonopin, I guess the big question on hand is, three weeks of medication, but are they working? It’s still somewhat hard to say. This week has been so crazy with work I’m confused on what I’m actually felling. This week I have been doing a freelance job doing hair for a musical. Besides being a very stressful situation, I’m also just overly exhausted.
I’m normally in bed by 10:00 pm and awake by 7:00 am. I don’t actually go to sleep at 10:00 pm but I do go to bed and watch TV until I fall asleep. I usually fall asleep around 11:00 pm. I am fully aware that lack of sleep triggers my tics, so I always make sure I get a good eight hours of sleep.
Working freelance on this musical has altered my sleeping schedule, and is screwing with my system. I have been going to sleep around 2:00 am, if not later, and still waking up at between 7:00-8:00 am. I have an internal clock called OCD that wakes me up at the wee hours of the morning no matter what. Today is not any better.
Last night was the last show ending with the cast party. I made a brief appearance, knowing that I had to be on this bus at 8 am. I got to bed last night at around 2:00 am, and woke up at 6:00 am to get ready and get to the bus. Fatigue being a big trigger for my tics, I feel like a human vibrator, who knows, maybe this guy next to me is enjoying it, but I’m not.
So we just passed my house and I’m still on this bus. The Klonopin has somewhat kicked in, I’m somewhat relaxed, well as relaxed as I will ever be. I still have a well of tears building up, but I’m not even sure what the reasons for wanting to cry are. I think it’s just the anxiety.
All that is going through my mind is all of the bus crashes that have happened in the very recent history. I don’t know this driver, what are his credentials? He could be just some guy off the street that said, “Hey I could drive a bus”, but can he? Oh god, tears building up more! Even though I want to cry, I’m laughing inside. This poor guy next to me, He has to sit next to the human vibrator who’s on the verge of crying.
On a separate note, there is an update to last week’s post about a certain pop star that I tweeted about and her stereotypical reference to TS. I still never received a response from her about my tweet, but I was informed that she closed her Twitter account. I don’t think she deleted it because of my tweet to her, I was very polite in what I said. I hope it wasn’t because of my tweet, I’d hope that she would just educate herself rather than running away from the situation by deleting the account.
All right, we’re about forty-five minutes outside of Boston. I’m almost there. Thank God. It hasn’t been that horrible. I’ve tried to relax as much as I can, but the tears did start flowing. It wasn’t really crying, just tears pouring out. Anxiety sucks! I have been ticcing like crazy, but pretty sure I have not bothered anyone besides myself. I just can’t wait until we get there. I need to get off this bus. I need fresh air!
The anxiety level is very close to the uncontrollable level. My neck hurts from the ticcing, my hands are shaking from the anxiety, and I want to jump out of my skin. I’m sitting here looking out the window and have very little fears about jumping out of the window because at least I would not be on the bus anymore.
I do have to say my OCD’s are not that bad, but I have my earphones in so I can’t hear if anyone is sneezing, coughing, or spreading any type of germs. I really wish I had my super hero costume on (my bubble). My bladder is about to explode, but there is no way I’m going to the bathroom on this sardine can of germs. I can’t stand and go to the bathroom because of my tic. I would end up urinating all over the bathroom and not actually in the toilet, especially on a moving bus, and there’s no way in hell that I am going to sit on that gross seat.
Yay! I made it! I conquered a fear, and I’m still alive. I do want to pass out, I’m just so exhausted due to the anxiety, suppression and life, but I did it. Until next week, “I’ll tic to you later.”