52 Weeks of TS: Week 50

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just TWO weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

I’ve been doing a lot of thinking lately, thinking about what I’m hoping to achieve through my writing. I was asked about this topic this week when I did an interview about blogging, writing and reaching out to the TS community. The interview was for the TSA newsletter, and it got me thinking: Besides a little ADHD and having a little difficulty concentrating, I don’t have that many problems writing. I can set a time line and finish the project in that time line. If I sit down in front of my computer, the words just roll onto the screen. I might not have a hard time now, and enjoy what I do, but this wasn’t always the case.

Back in school, I was always behind with my work and it was always a struggle. Being in a classroom full of students with all sorts of distractions did not make it easy. I know there are still children today who are struggling the same way, too scared and embarrassed to say anything. I wish I knew then what I know now, maybe I could have changed something in my educational process to make it easier and more enjoyable.

I have noticed recently that my tics are changing. I guess that they are always changing, but this is different. I’m not sure if they’re getting worse or if I’m just having a harder time suppressing them. I have said before how I have been getting more comfortable with my tics and not feeling the need to suppress them, but even in situations when I’m trying to suppress them I am finding it to be a struggle.

I’m starting to think it might be the Chinese herbs I’ve been taking. I have been taking them for more than six weeks now, and I don’t feel as if it’s helping at all. Now I’m just in a panicked state, wondering if I screwed up my body more with the herbs. I have made a decision to stop taking them, I have not spoke to my herbalist about this yet, but I just feel as if it’s something I need to do.

Our bodies are constantly telling us what they need. If we lack vitamin C, we crave orange juice; if we need protein, our body will let us know it needs some. This is how I’ve been feeling this week. I have been having many smaller tic attacks that I can’t control, and there is something in my body that is pointing to the Chinese herbs. So yet again, one more failed attempt to find my nonexistent path to normalcy.

One of the new tics I have noticed is a violent flipping in the middle of the night. I always thought I did not tic in my sleep. Even my husband has said that he knows when I’m asleep because I don’t tic anymore. In the past few weeks, I have noticed that In order to roll over, I tend to do this violent full body twitch to roll over. It’s so violent that I actually wake up. It wasn’t until this week that I started wondering about this new strange movement. Is it a new tic?

The other morning my husband woke up and told me I was not allowed to keep complaining about his snoring if I was going to continue this violent flipping thing I was doing. That was it, I was convinced that this was a new tic. My husband has noticed this new tic, and it is even keeping him up. Well I guess it’s even with the amount of time he keeps me up with his snoring.

I think this new tic was the last straw in my decision to stop the Chinese herbs. Is this new tic caused by the herbs or is it just more of the waxing and waning of the syndrome? It’s just gets me thinking more about what I might be doing to my body with all of these attempts to find a cure. Is there a cure? Is little old me going to be the one to find it? Is my life that bad that I need to keep attempting to do this to my body?

The truth is my life is good. I’m happy; I just do these weird movements. I’m sure I could continue educating people about the reality of TS, but how much would I really get across if I looked normal. If I twitch and tic, it will be easier to start a conversation if someone notices.

Maybe all of these attempts to find the cure, might be one more way for me to hide from whom I am, and that’s not what I want to do. Throughout this year, I have tried so hard to educate people and every time I do, I experience the greatest, warmest feeling inside. When I was hiding from who I was, all I felt was shame and loneliness. Why would I want to go back there?

I still find myself doing little things to hide from who I really am. This week I did some shopping for some winter clothes and I realized something else. I love hoods. Most of my shirts, sweatshirts, or coats have a hood. Wintertime is the best time for me to show off this love, but there is more behind this fascination. It is a way for me to hide. If I have a hood on, I feel like people can’t see my tics.

Armed with my hood, my sunglasses, and my earphones, I am hiding from the world. I think it is time to take off my armor, take off the sunglasses, take out those earphones, and pull that hood down off my head. Life is a learning experience and we spend our whole life doing this. Perhaps the whole reason I have gone on this journey was for me to learn. Let the world see me for who I am.

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

52 Weeks of TS: Week 41

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 11 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

Change, change, change. I have made so many changes in my life in the past few weeks and months, but I can’t say there is much of a difference. It’s really hard to tell. I was sitting on the subway the other day thinking, and I started thinking about my anxiety. Has is calmed down? I’m not really sure, but I think it actually might have a little bit.

With all the changes, I can’t really say what has caused the slight relief of anxiety. Could it be the vitamins, the fish oil, or the fact that I left the setting of my stressful workspace? The anxiety might have calmed down a bit, but the tics and OCD’s are still there. Now I’m not saying that I’m completely stress free, and void of anxiety. It’s still there; I just feel it might have calmed down a bit. I guess for this upcoming week I’m really going to feel it out and see if it really has calmed down.

I’m actually surprised that my anxiety has not skyrocketed this week. I started my new job this week, and that’s usually not the calmest of moments, but I have to say it has been a stress free change. I have told everyone that I have TS, and I’m very comfortable with the new people in my life. It’s actually really nice to want to go to work, and not have to deal with the dramatic situations I was dealing with in my previous work setting. To keep it simple, I’m happy.

I’m still trying to gather up the nerve to make my yearly dentist visit, but the time has really come. The anxiety might have calmed down a bit, but the tics are in full force. One night, I was having a tic attack. I was trying to relax the tics, but the tics were in control. Besides all the head jerking, minor vocal tics, back contorting, nose pinching and rubbing, I was also grinding my jaw. I always forget to mention the teeth/jaw grinding tic — it’s one that is just there. I forget that I’m actually doing it.

This one night I was reminded that I was doing it, when I chipped one of my teeth. Both my parents had bad teeth, and my dentist has told me my teeth are soft. No matter how much I brush, floss, and take care of my teeth, something ends up going wrong; I just never thought a tic would cause me to chip a tooth.

This same evening while I was having my tic attack and chipping teeth, I post a status update on Facebook at 12:30 a.m, saying, “stressed, ticcing, and can’t sleep :-).” I had many supportive comments back, but one that really made me laugh. One of my friends told me to meditate. He said he found meditation and it has helped him out in stressful situation?

I responded that anxiety disorder and meditation doesn’t really combine well. I have tried meditation before, but with anxiety disorder and ADHD, I just can’t do it. I wish I could. The same goes with yoga. Try staying in a yoga pose, while your mind is telling some part of your body to move. It’s impossible.

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Today I practice what I preach

God, grant me the serenity to accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.

Yup, just another week of tics and noises, and yes, after hearing them over and over, I get a wee bit exhausted.

CONFESSION TIME: Dearest vocal tics, I am sorry for finding you annoying. I wish I didn’t feel that way. There’s a mom who I read about over on some Facebook TS page who just thinks all your clicks and throat clears are awesome. “They are just so adorable,” she squeals. Um, sorry, I don’t. Why? Because I want to hear my kid tell me a story he is writing about the Magic Egg without having his sentences disjointed every other second with this squelched honking sound.

CONFESSION TIME TO ANYONE READING WHO HAS TS: I must come off like a total boob. To be fair, let me tell you that if you hang out with me enough, you’ll get tired of my crazy nonstop talking, my annoying “vintage” clothing that has me often looking like a polyester Minnie Pearl, and my butt that seems to be getting bigger with each passing day.

CONFESSION TIME FOR ME: I know that I am doing a great job with my boy. Why? He still so happy and thriving. Tourette is just one more opportunity for me to focus on what is truly important — the soul of my child. The heart of my family. When I get distracted about noises, I only need to remember my Friday wine companion, Ellen (above) who, despite being in an auto accident when she was 18 and living life from a chair, is one of the most kick-butt human beings I know. She teaches at our local Cal State. She bowls, surfs, swims and posed for Hugh Heffner ( a full spread… oh my) back in the day. She doesn’t let a few things like, oh, walking, stop her.

TAKEAWAY: To pretend something doesn’t bug you just to look better to other people who might judge you for having negative feelings… that’s lame. It’s fine to vent. But here’s my personal conviction: Don’t just vent and run. (Have you ever been around someone who farted and left the room? Not pleasant.) Release and then clear the air! (In the cases of gas and tics.)

Speak your thoughts but have a plan for restoration — if not for the tics — for you. How are you going to take care of yourself so that maybe the noises don’t bug you so much? How are you going to discipline your child, tics or not, so that they grow up to be healthy members of society? Are you willing to accept that, twitches or not, your kid might have amazing gifts and change the world anyway?

Just a few random thoughts.

Oh What A Tangled (Neural) Web We Weave: A first-person account of Tourette Syndrome (part 7, medical overload)



EDITOR’S NOTE: This multipart series first appeared in the March 2010 edition of the Journal of Clinical Psychology Practice and also can be found on Life’s A Twitch, a website run by Canadian psychologist Dr. B. Duncan McKinlay.

The wretched private depths I inhabited for many years as a patient with TS, OCD and ADHD go far beyond any diagnostic criteria. Symptoms are a moving target: having gotten used to one tic another more bothersome one takes its place — likely because the very act of becoming accustomed means one’s attention is no longer priming that tic as readily.

Symptoms sometimes wane long enough to see what a “normal” life would have been like, and how the world would interact with me differently. Then the mirage ends, also baffling, disappointing or infuriating those who based their expectations of me on a ‘good’ day.

There are many costs involved (time, effort, emotion and money): not just in the treatment of tics but also the comorbid conditions. I have rituals to prevent, Concerta to buy and structures to implement and adhere to. Associated medical costs accumulate (e.g. chiropractic care for tic-induced subluxations) as do the costs of replacing objects, people or electronic data not able to withstand tics, impulsive decisions or explosive reactions.

Sleep deprivation and painful symptoms exacerbate an already trying situation, and social costs attached to all this inner warfare are high. Even social cues I’m not too consumed to catch can be misleading, as the interactions modelled are of the type reserved for those who are different. Continue reading