If Only I Got Frequent Flyer Miles for My Tics
What It’s Like Living with Constant Movement and Noise
I’m tired a lot of the time. Sometimes it’s down to a sadistic coach writing a punishing training session at the gym, and sometimes it’s down to going down a YouTube rabbit hole and staying up later than planned. But mostly it’s because my body and mind are almost constantly active.
Imagine that your leg was bouncing up and down, and you couldn’t stop it. Now imagine that this was happening constantly throughout the day – you’d probably get quite a tired leg by the time you were ready for bed. This is kind of what it’s like to have Tourette Syndrome.
For most of the day, even when I’m sitting at my desk, or lying on the sofa, there aren’t 5 minutes that pass where part of my body isn’t involuntarily moving. It might only be small like fingers tapping on a table or a shake of the head, or it might be much bigger, like punching my own face until it bruises. But it’s pretty much constant.
There are some times when my body is still, but my brain will step up to the plate instead. Trying to calm down my tics, or thinking about what people thought when I was in full flow with my worst tics. Aside from the TS, or maybe linked to it, I do have a very hyperactive brain. It just never seems to switch off, which I’m told is not the case for everyone.
Now, I will caveat all of the above by saying that it isn’t every single day. I do have some days that are better than others, where I feel a bit of calm. But there are times where my tics go supernova and more than make up for the quiet times. Although sometimes I can’t pinpoint a trigger, there are a few things that I know have a strong chance of making my tics worse.
Tiredness
The number one trigger for me is tiredness. If I get too tired my tics will intensify what feels like a million fold, so sleep for me is really important. I know if I don’t get a minimum 7 hours sleep then I’ll have to deal with increased tics all day.
I used to work night shifts and those 22 months were among the worst I’ve had in terms of frequency and intensity of tics. I noticed a massive difference when I went back to working a normal 9 to 5.
Stress
I’m generally quite a relaxed person, and try to not let things get to me. Part of this is because when I get stressed my tics get worse. It’s a good warning sign that I need to clear some things off my plate when I notice my TS get worse.
Drinking
When I go out for a few tipples I know there is a chance I’ll be whistling away – and not just because there’s a banger playing. I don’t know the science behind it but I’d say 50% of the times I get drunk, my tics come out to play in a big way. I think it’s because alcohol makes you lose your inhibitions, and so I lose the ability, or desire, to hold them in. So I think they’re always in the background trying to get through, being held back by an invisible barrier.
Social Situations
When I’m in a group of people and there are some that I don’t know, or some that don’t know I’ve got TS, I’m much more likely to tic. I’m very conscious of ticcing and people not knowing why I’m doing it. If you read my post ‘The Day My Tourette’s Showed Up at Work’ I talk more about what it feels like to tic around those who aren’t aware.
But when I know, or even think, that people who don’t know about my TS have seen me tic, I will tic even more. It becomes a never ending cycle – the more I tic, the more I worry and the more I tic.
I am actually someone who would rather get asked why I’m doing that, than be sitting there worried that I’m being judged.
I will say, if I’m in a small group with people I’m comfortable with, I tic so much less. Which shows that it really is exacerbated by the anxiety I feel being around new people.
Stopping the Tics
I don’t have any surefire way of stopping one of my tic attacks, but one thing that often helps is just forgetting about it. Tuning my mind to a different topic. The problem is that this is much easier said than done. It really only happens by accident, I’ve not yet figured out how to make myself change the channel – the more I try, the less I succeed.
Focusing on something is a mechanism that helps a lot of TS sufferers. You may have seen documentaries where a kid with TS will put on a roller blade or start drumming and immediately stop ticcing. I don’t have any hobby like this that will immediately stop my tics, but I do notice that if I am really concentrating on something, like driving, making LEGO or watching live football, they are drastically diminished. But that does mean that when I start to relax, they tend to make a reappearance.
Despite living with this condition for around 20 years, I’m yet to figure it all out. I learn new things about my TS and how to live with it all the time. Hopefully, one day, my tics will just be background noise — not the main event. Until then, I’ll keep learning, adjusting, and tuning out the noise the best I can.
If you live with TS or know someone who does, I’d love to hear your experiences or tips in the comments.
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