Today’s guest post for National Carers Week is written by my friend Claire.
I met Touretteshero a few years ago through Tourettes Action. She immediately impressed me with her attitude, ideas and talents. We worked together on a few events, both for Tourettes Action and Touretteshero, and the more I got to know her the more I liked her and felt inspired by her. She’s now a friend and I feel privileged to call her that, and after a few weekly swimming trips with her and Poppy earlier this year, I also became part of her support team. For me, this means hanging out with someone I like, who occasionally needs my help to do stuff.
We’ve had a few road trips lately, which have been made special by the unpredictability of Tourettes and people’s reactions to it. By now I’m used to Touretteshero leaning out of my car window to tell the world she’s being kidnapped, but going through customs at Gatwick Airport with her and Ruth declaring between them that my hand-luggage was full of a potent mix of petrol bombs, crack cocaine, chlamydia and a Springer spaniel took things to a whole new level. It was lovely to see the people around us react with smiles and chuckles to the way Touretteshero and Ruth handled the situation with typical good humour, clear explanations, and style.
I support Touretteshero out of choice and I really enjoy spending the time with her. Many carers don’t have this choice and I have nothing but admiration for them. Touretteshero is pretty good at articulating what she needs people to do, but I think sometimes it’s harder for her to tell people what not to do, or that she needs some space. A challenge of supporting a friend can be knowing when to be a mate, when to be a carer, and when to take a step back.
My favourite Touretteshero tic changes as new ones come and go, but at the moment it’s, ‘Oh myself’ said with a rather posh and slightly dramatic sigh. Anything about bears also makes me smile.