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Living with Gilles de la Tourette Syndrome, these past two weeks

The wheel once again turns. The things which I am struggling with now have not been so much as emotional disturbances but more tic related problems. If you don't know what a tic is it's a involuntary movement or vocalisation. People with Tourette's experience both of these. The media has widely portrayed Tourette's as the swearing condition when in truth only a small minority of people with Tourette's actually swear or make obscene gestures. I myself experience a a wider range of motor - movement - related tics than I do with phonic tics. These mostly revolve about neck jerks and grimaces and blinking, they can occasionally be painful. The vocal tics I experience at this point were gasping sounds and ones that sound not too dissimilar to the hiccups, quite handy in masking usual behaviour in public. Certainly not swearing or giving people 'the finger'.

Two weeks ago I had some thing close to a tic attack. A tic attack is, as the name suggests, an explosion of tics in frequency lasting usually for hours. This occurred after having quite a peaceful day at my voluntary job, which was almost tic free. I had a phone call that day inviting me to a weekend retreat for some team building sort of activities which I agreed to attend. So I came home and I decided to look up on the internet the place I would be going to and the things I would be taking part of. These things included mostly a set of things involving heights. I had a mixed reaction of both excitement and anxiety; I'm not so much as afraid of heights as I do just not wanting to actively to part take at putting myself into positions at heights. But now knowing what this weekend involved it thus signalled the beginning of the relentless onslaught of tics.

The evening began with a compulsive need to hold my head in a particular forward position for minutes on end on top of all the normal grimacing and neck jerks I experience, this got painful after a while. The few times I was able to break myself from this I would go straight back into it within a few seconds. After a few hours of dealing with that it then switched to a need to strain my throat. This lead me to talking like I was a heavy smoker and limited my ability to breathe proper full breaths. This one was the taxing one. I eventually gave up with being awake I decided to call it a night which allowed me to return to normal. The next day saw an increase frequency of tics but it had gotten easier.

Fast forward a week and I just felt devoid of energy to continue on. I deal with having this condition very well but that day I had just had enough of it, I wanted it to go. I ended up crying because I felt like I could never once again have a day when I could just truly sit down and relax, not feeling this everlasting need to keep moving or making sounds. I couldn't remember what it was like to just be still. This is when things got worse, I developed yet another tic. If you've watch the recent BBC documentary called 'Tourette's: Teenage Tics (it's on BBC iPlayer and it's a really good watch, you can also find it bootlegged on YouTube) there's a man in there who has a tic that's a really good impression of a dog barking. I have some how been able to replicate this tic. One thing you should know about having tics is that one person ticcing can set off another person. They can also copy other people's tics like catching the lurgy of someone in the winter.

I am now officially barking mad. I have not yet had the pleasure to do this around people I don't know or know I have this condition. I did happen to bark on my way to see my psychiatrist last Wednesday, fortunately no one was about. I have to admit that no I am a little worried about being out in public knowing I have this tic. I guess this might be something I am going to have to get used to because this tic could hang around for a while. The good news is that it isn't a frequent tic.

After a disappointing start to the week I had had a good Wednesday when meeting my psychiatrist, we talked mostly about my tics this time, I showed him a range of the ones I currently have. He reinforced my stance on how to deal with this disability: simply don't worry about it and you'll be fine and to distract yourself as best possible when they do get bad. This gave me the energy I needed to walk around the high street and get a few things, which is quite a thing since I have problems with being on my own in public spaces. During this I barely ticced.

So, this brings me up to date on the situation. Apart from the down days and when it gets really bad, I don't really mind have TS. I think it makes me a more interesting person. Yes, it is lonely when there are few people around you who are like you but I think being unique is a good thing. After all, who wants to be a copy of another person?

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Southern Discomfort
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