Asking for fucking help

Went for a regular appointment for my Tourette’s Syndrome psychiatry clinic.

I usually just go in once a year for a check in, have a very quick meeting and be out again in no time. Yesterday was different, after finding a level of peace with my tics a couple years ago this last year has become increasingly distressful for me. I dont take medication for it, mostly because I suffered badly with side effects when I did try it. I’m on a long waiting list for botox in my neck, and possibly throat, in the hope tnat my neck can be pain free for the first time in 2 years. I dont care that it’ll be temporary, a break from the tension and pain will be a most welcome relief. But that wont deal with anything other than my neck (and a lot of the resulting headaches)ย 

So I asked for help, a support group, to help me fully come to accept and be comfortable with my TS. Learning coping mechanisms I may not have encountered, and getting ideas on how best to deal with OTHER PEOPLE…..! I am far better/more comfortable with talking and explaining things but after around 15years of working hard to hide or disguise my tics, not being believed by doctors, told i was imagining, or making it up. I had become so adept at hiding, as best as possible, whenever anyone was around, its proving hard to break that behavioral pattern. And I really want to break it, I spend so much energy holding back and it causes so much pain, that i can do without!

It turned into a long and very emotional appointment, once i started crying I couldn’t stop for minutes. Luckily there was time for me to recover to a speaking state as it took a while to find information needed.

I have been given details about the Tourette’s Action group and contacted them as soon as I got home. And we have decided to increase my visits for the time being while I deal with this issue. overall it was a good visit, very productive and helpful, though it did leave me totally emotionally overwhelmed and exhausted. So back into my nest I climbed.

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6 thoughts on “Asking for fucking help

  1. I sympathise with your experience entirely, trying to learn to accept something like Tourette’s can be difficult at times – I constantly over-think how I appear to others with my tics. Gradually getting better at ignoring myself though, I hope that comes for you in time too ๐Ÿ™‚

      • I know this sounds completely counter-intuitive but for me the trick seems to be not trying not to think about it. No idea if that’s any help or if it just highlights how tangled my brain is ๐Ÿ˜›

        • No actually I agree! So either your brain is just ‘fine’ or, sadly for you, its as much of a mess as mine is!! ๐Ÿ˜‰

          Part of my long term plan is retaining my brain to focus on other things, when I manage it the tics often decrease (not always!) and what do occur I am less bothered by. thereby reducing the negative feedback loop where I tic, get frustrated, tic more, get more frustrated…….!!

          • I’ve noticed over the years that if I’m totally involved in something the tics almost entirely drop away. I can sit and play bass (I’m a bass guitarist) for ages in my calm patches and hardly tic at all – even during bad times like now I still notice a huge reduction in tic activity.
            We’re probably all neurologically ‘fine’ in similar ways really hehe ๐Ÿ˜›

            • From what I’ve gathered, through chats with neurologists and personal experience, it’s common for tics to disappear when focused on something. I like certain things as I find my tics almost completely vanish for a while, except for on the worst days. And though I get triggered by the urge to rebel during quiet meditation, that and yoga are extremely helpful, though I still long for the day where I am comfortable having a twitch fit and shouting Donkey Bollocks during a nice peaceful class!

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