Guest Blogger: Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

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Exercise … why don’t I?

I wrote a post recently, Positive Distractions, in which I listed six things you can do when feeling low or anxious or just really ‘meh’. I have been thinking more about the things I wrote in that post and thought I would share what has been on my mind. So, in a way, I suppose this post is a bit of an update or part two of that post.

First of all, it has been bothering me that I posted six distractions. Don’t ask me why. It just has. It just isn’t a comfortable number for me.

Next, I would like to inform everyone that I have officially bought a NEW COLORING BOOK! Yay!

Thirdly, and the actual reason for this post, my fiancé and I played tennis the other night. We have been talking about doing this for a while now. So, we met at a local park when I got off work one night earlier this week to play. It was a very interesting experience. During the two hours we were there, the ball strayed outside the fence twice. I think I was finally starting to be able to return the ball sometime in the last half hour. I’m sure I looked ridiculous flinging my racket through the air and hitting…..nothing but air. Needless to say, I am horrible at tennis and Jacob had a good two hour laugh.

I learned two great things that night. The first of the two is something that I learn over and over again. I learned the importance of being able to brush off a failure, laugh at yourself, and start all over again. It is also what I am officially making number seven on my list of positive distractions.

Do something ridiculous, make a fool out of yourself, and laugh about it until your sides hurt! Go out and play a sport you are super terrible at with a friend and laugh at yourself. Or don’t go out. Just do something goofy and laugh at yourself until you can’t help feeling good. I know that sometimes it’s just not that easy, but when you do find yourself laughing uncontrollably at the fool you have made of yourself, you tend to feel so much better. Besides, laughing at yourself is so much better than sulking about something. I could have just given up, figured I would never get the hang of it, and ruined not only my night, but my fiancé’s as well.

The second thing I learned is something I knew once, but gave up on and ignored altogether. If you read the positive distractions post, you know that I said that I felt like a bit of a hypocrite for suggesting exercise because I really don’t utilize that one…..like ever.

Here’s the thing. I actually used to run a lot. I started taking walks just to get out of the house and clear my head

It was a great distraction and it felt really good to get out. There is just something about exercising that causes you to feel really good once the initial shock and feeling like you are going to collapse if you make another move passes. I eventually made enough progress that I started running occasionally. Occasionally eventually turned into everyday runs in the ridiculous Missouri summer heat, which included crazy humidity and heat indexes over 100 degrees.

I replaced all my negative coping skills with exercise. The problem is that I became absolutely obsessed with working out. I ran in unhealthy conditions. I didn’t eat well, ran in dangerous temperatures, and literally felt like I was going to pass out by the time I reached home on several occasions.

So, why don’t I exercise like I know I should? Well, I’m not going to try and make excuses. I know that I need to start doing it more often and on a regular basis. It is a great stress reliever and simply makes me feel great in general! So, here’s to accepting and admitting the truth. I don’t exercise enough. I realize I need to do it more often and more regularly. I also have to not let it become an obsession. I have to be smart and cautious.

We have to be careful not to let positives become negatives. It is so easy to let what is good for us get out of hand and become unhealthy.

Stay Safe, Stay Strong, Stay Beautifully Imperfect. Bye!

Tourette’s and OCD, Cousins or Siblings?

I have yet to meet another person with Tourette’s who does not also have at least one comorbid condition. For me, there has not just been one, but at least three of these ‘cousins’ as they are frequently called.

There are so many disorders and syndromes that are so closely related and occur simultaneously that I could not possibly begin to list them all. the symptoms of some disorders are so similar that it is easy to mistake one for another. There are many people who go misdiagnosed because of this. This is why comorbid conditions are often referred to as “cousins”, because they are so similar and closely related, just as members of a family might be.

I have family members who have been mistaken for each other either because they sound like the other person over the phone or because they look so much alike that someone who has not seem either one of them in a long time mistook one for the other. For example, when my sister and my cousin were younger, people mistook them for sisters rather than cousins when they were together. My sister has always looked as though she belonged to my aunt rather than my mother.

Obsessive Compulsive Disorder (OCD) is one of the conditions that can co-occur with Tourette’s. A person with OCD has obsessions and compulsions. Basically, you have an obsession, a thought that will not leave and causes you anxiety, and the only way to relieve that anxiety is to carry out a compulsion. The obsessions and compulsions can consist of a variety of things.

Everyone forgets what day of the week it is once in a while. At least, I think everyone does that once in a while. I’m really hoping it’s not just me. For me, though, it causes this anxiety and I think, “Oh my gosh, I thought today was Saturday and it’s really Friday. What if I forget what day it is tomorrow and something bad happens because I forget what day it is and forget to do something or go somewhere?”  Actually, it feels a bit more like this as it goes through my head,

“OHMYGOSHITHOUGHTTODAYWASSATURDAYANDITSREALLYFRIDAYANDWHATIFIFORGETWHATDAYITISTOMORROWANDSOMETHINGBADHAPPENSBECAUSEIFORGOTWHATDAYITISANDFORGETTODOSOMETHINGORGOSOMEWHEREORSOMETHINGLIKETHAT!?!?!?!?”

To relieve the anxiety caused and keep ‘imagined bad thing that will happen because I forgot what day it was’ from happening, I repeat this over and over in my head or even out loud if it feels necessary, “Tomorrow is Saturday, not Sunday because today is Friday, not Saturday.”

For a lot of us who have both OCD and Tourette’s, it is sometimes easy to mistake the two as siblings.

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