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52 Weeks of TS: Week 35

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

Well I’m back in NYC and trying to acclimate to the city living. I made sure my housekeeper came before we came back, but that didn’t help too much with my OCD’s. After such a long time away from home, and a four-hour car ride home, the first thing you want to do when you get home is sit and relax in front of the TV. That’s not how it worked out.

As soon as we got home, I spent about two hours cleaning, disinfecting my whole apartment and getting rid of the strange smell. It nice to come home, but I still have to deal with a houseguest for the next few weeks. She’s staying on our sofa, and has her stuff all over the apartment driving my OCD’s crazy. I’m really trying to return to my normal routine, but it’s hard when I wake up and see my apartment in disarray with suitcases, clothes and makeup bags.

Once I did get my apartment to a satisfactory state, I was finally able to sit down, relax and watch TV — or so I thought. Did I really think it was going to be that easy? Nope, the TV was broke. I then spent the next hour trying to figure out if there was some connection problem, but it wasn’t the case. The TV was dead. I then had to disconnect the TV, and bring the TV from our bedroom into the living room and then had to reprogram the remote to work with the TV.

I don’t deal well with being in cars, especially after a four-hour car ride, I just wanted to relax. My tics were going crazy, and I was exhausted. I was finally able to sit on my sofa, relax and watch TV. At one point my husband turned to me and told me to, “Stop moving your legs.” I was a little surprised by this comment, we’ve been together for 13 years, and he just notices this now.

I do a lot of shaking and stretch with my legs. If I’m sitting, or lying down my legs are never comfortable, and I always have to move or stretch them. I never considered this a tic, but rather just self diagnosed this as restless leg syndrome. This incident got me thinking, and I Googled, “Restless leg syndrome and Tourette syndrome.” I came across a web article saying that individuals with TS are likely to have underlying disorders including anxiety disorder, ADD, eating disorder, hyperactivity, poor immunity, Restless Leg Syndrome and many more underlying issues.

I’m not saying to believe everything you read on the internet, but I did find this interesting. Everything they describe, I have felt or dealt with at one point in my life, if not all of my life. Most of these underlying disorders I have discussed as part of my TS, but it was interesting to learn that there could possibly be more that I never tied in with my TS.

I have had issues with eating disorders in my life, and as for the poor health, I get sick very easy. The article explained that especially if you have anxiety disorder, your immune system could be poor. If you think about it, it make sense, anxiety takes a toll on your body, which can then take a toll on your immune system. This explains why a few years back, when I was going through a very stressful time, I got shingles. The doctors at the hospital were concerned that I was so young and seemingly healthy, but still got shingles. I did not tell them I had TS.

I consider myself a healthy person. I’m a vegetarian, and I always try to eat healthy. I do smoke and drink, which I know is not the best for me, but I try to maintain a healthy lifestyle and exercise. I do plan to quit smoking soon, it’s disgusting, and I know it’s so bad for me, but it’s hard. However, with what I’ve learned this week, maybe it will push me to quit even sooner, and maybe try to be even healthier. I have a syndrome that is taking a toll on my body. It is not just a series of tic, but many other disorders that are affecting many parts of my body, and maybe it’s time to look and listen to my body more.

I did return to my job at the hair salon this week, which was nice. I’m glad to be returning to my everyday life, my normal routine, and schedule. I had a client, who I have been doing for years, come in this week. She brought her sister in for a haircut. We were talking about our summers, and my client asked how the writing was going. I told her that I finished the book, and her sister inquired about the book. I told her I wrote a book about Tourette syndrome.

Oh, here we go again. She asked me how I decided to write a book on Tourette syndrome, and I told her I had TS. She acted surprised, and said she would have never know, she did see me ticcing. I jokingly explained to her that I was working very hard on suppressing my tics; otherwise, I might cut off her ear. She then went on to say that her 20-year-old son has TS.

I find this crazy, I spent so many years in my TS closet, and all I really needed to do is open my mouth. It is coming to the point that I meet someone else affected by TS at least every other week. For all those ticcers out there that feel like they are alone, open your mouth. There are so many of us out there. I am learning that the more we talk about it the more we learn. We meet others who have similar stories and people that can relate to us. The more research we do the more we learn about what is going on in our body. Be an activist, do research, and open your mouth. We have an incredible community out there.

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

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