The final guest post for National Carers Week is written by my wonderful sister.
I am Fat Sister, Touretteshero’s only sibling and King Russell’s long-suffering wife.
I can’t remember Touretteshero ever expressing an opinion on biscuits as a child. Most of her tics then were physical and a fair number were directed at me, including elbow-biting, hair-pulling, and one particular incident involving a banana being squashed into my face. I can remember being annoyed by these invasions of my personal space, but I don’t really remember being angry with her. I mostly just accepted this as normal sibling behaviour – though this may be seeing things through the rose-tinted glasses of hindsight.
When Touretteshero told me as an adult she thought she had Tourettes and was going to see a neurologist I was slightly baffled as to why, because the elbow-biting and hair-pulling had stopped. But there were still challenges in spending time with someone who had a pathological disregard for the integrity of my hairstyle.
For me, the biggest challenge of being a carer has been accepting that I fall into that category at all. Over the last two years I’ve been known to say, “I’m not your carer, I’m your sister.” I guess that in the same way I didn’t initially understand why there needed to be a diagnosis for Touretteshero’s twitching and whistling, it’s taken me a long time to accept a label for the stuff I do for my sister.
I think its meaning only really hit home recently when I was faced with the prospect of having to move away for my job. What I do for Touretteshero is by no means crucial: I don’t help at work, I have a reputation for drinking while on duty, and on the only time I was called upon to help in the bathroom I almost fell over laughing.
But I think we both felt a sudden wave of panic at the thought that I wouldn’t be there to drag her to the pub, pop in for tea, or flop about on her sofa watching endless episodes of Poirot – some of the key things I excel at.
All of a sudden I had to think about explaining to other people why I’m so closely involved with Touretteshero and why I shouldn’t have to make this unwelcome move for work. I realised then the importance of having the right words.
I know Touretteshero feels similarly about explaining Tourettes to bewildered strangers. I still don’t really think of myself as her carer but I do realise that using this word is easier than providing a list of recent activities, with accompanying notes.
My favourite tic has to be “Squirrel” – the original.