It Only Takes a Minute….

… to rub your face raw on the carpet.

Part 1

It’s been freezing today, and despite the heating being on in the castle this evening I was still chilly, so while my agency carer was in the kitchen I wobbled along to my bedroom to get another top. I never made it to the jumper though – just as I got into my room I started to have a ‘ticcing fit’. I dropped down and moved uncontrollably and vigorously on the floor. I could see an orange smear forming on the carpet and felt the skin on my forehead being rubbed away.

My carer was very quick to respond and was with me in less than a minute. Nevertheless it seems that’s all it takes for me to get a massive carpet burn on my head.

Tourettes waxes and wanes, and this means the intensity of tics changes through the course of someone’s life. At the moment my vocal tics seem to be slightly on the wane. They still happen a lot but I’ve noticed that recently they’re a little less constant than they have been.

Now that they’ve calmed down a bit I’m sometimes quiet for several minutes at a time. While in many ways this is positive, it does make it harder for my support workers to know if I’m in trouble or not. Previously if I was quiet even for a moment they’d know something was wrong.

Part 2

After writing the first part of this post I went to sleep. I woke up during the night in urgent need of the loo. Just as I got out of bed I ticced and my body careered forward suddenly. My head, just above my eyes, collided with the end of the bed – it was incredibly painful. My night-time support worker heard the bang and immediately came to help.

These head injuries have reminded me how quickly I can hurt myself even when someone’s very close by. I need to be very mindful of this when I’m making decisions about what to try and do for myself and when to ask for help.

Luckily these injuries aren’t serious. But I know that given the intensity of some of my recent ‘ticcing fits’ it would be all too easy for me to damage myself very quickly in the wrong set of circumstances.

2 Responses to It Only Takes a Minute….

  1. Catwings says:

    Does your night support worker need to be awake all night to keep an eye on you or do they sleep too and just come when there’s trouble?

  2. My support workers do a ‘sleeping night’ which means they can sleep and are not expected to need to wake more than a couple of times a night. I have a buzzer that I press to alert them although I can’t always manage to press it.

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