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) 

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 🙂

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

          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 😛

            • 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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