Dear Daytime Self

When, how and why I’m writing this post feels horribly familiar. It’s 3.10am, I’m typing slowly with one extended finger, and I’m writing because I feel freaked out and alone.

About an hour ago I woke up and discovered my hands had contorted back into their pre-Botox dystonic positions. This didn’t particularly worry me because, as I described the other day, they’ve been doing this regularly during the night before loosening again within five minutes of me waking up. But this time an hour’s gone by and I’m still waiting.

It’s just my hands and fingers, not my wrists, and it may well correct itself by morning if I just go back to sleep. But going back to sleep is easier said than done because now I’m worrying about what’s happening.

Difficult things always feel so much worse at night because there’s no one to talk to. Poppy’s doing my support and I called through when I first woke up. She helped me go to the toilet but then she went back to bed. If it was an emergency I could wake her again, or call Leftwing Idiot. But it’s not an emergency, it’s just weird and I feel as unnerved now as I did when my hands first locked up on Boxing Day.

But writing feels like telling someone, and actually it’s an important message – to my daytime self.

By the time I read this back in the morning I’ll probably feel much more positive, regardless of whether my hands have uncurled or not. In the busy-ness of a day I often brush aside worries like this, or downplay them. But though that’s my natural reaction, it’s not helpful because it slows down the process of getting the problem resolved.

So Touretteshero, regardless of what your hands are doing when you read this back, you’ve got to accept that there’s still a serious problem and push hard for some answers.

But for now, it’s time to go back to sleep.

3 responses to Dear Daytime Self

  1. Michael Burke says:

    Hi Touretteshero, I have just finished reading your wonderful book WELCOME TO BISCUIT LAND. It is the most inspirational book I have ever read. It demonstrates your great courage, strength, determination and spirit of optimism.
    About six months ago the London TIMES did a survey of it’s online readers – among other questions it asked us to name the best book we had ever read. Were the TIMES to ask me that question today I would without hesitation name your book.
    In my opinion you are the personification of all that is best in the human spirit of determination.
    Sincerely, Michael Burke. (Aged 73).

  2. Michael, thank you for such lovely feedback. I’m really glad you enjoyed your time in Biscuit Land. Please do continue the journey with me through this blog.

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