I had a wobble today. Not just the physical type (that’s a very regular occurrence) but a more noteworthy emotional wobble. In the last few days I’ve written quite dispassionately about my year of ‘ticcing fits’. I’ve got used to suddenly having my day interrupted by my flailing limbs and loss of speech, and as I described yesterday, it’s become much easier to manage all this.
On the whole I’m happy and live an active life. And while there’s a great deal about it I wouldn’t want to change there are a few things that, given the opportunity, I would: my fits, my poor mobility and my need for constant support.
At my last hospital appointment my doctor did a blood test to see if my tics were linked in any way to the recurrent infections I’ve been having in my throat. I got the results back today, and it turns out they’re not. If they had been it might’ve opened up a new treatment option that would‘ve involved regular blood transfusions aimed at combating my autoimmune response.
I knew this would be a long shot and not worth putting any faith in until it was certain. But that didn’t stop hope slipping into my thoughts over the last couple of weeks. I hadn’t been thinking about it deliberately, but just as it’s easy to start spending theoretical lottery winnings the moment you buy a ticket, I’d caught myself wondering if a new treatment might improve my mobility and mean I could go for walks again.
When the results came back I felt disappointed, even though I knew it was silly to feel this way. The treatment would’ve been tough, and wasn’t guaranteed to help anyway. But even though I’m generally doing quite well I would’ve jumped at the chance of improving my mobility. Finding out this wasn’t an option was painful.
Thankfully when I wobble, physically or emotionally, I have solid stabilisers. Leftwing Idiot noticed my tears as I sat at my desk. He told me to take a break for a moment and we went outside. He comforted me and said lots of sensible things. He also reminded me of our brilliant trip yesterday. As well as pointing out how much I’m still able to do, he also understood why I’d felt disappointed. Later, when I explained it all to Poppy, she was similarly reassuring and empathetic.
I felt shored-up by their support and no longer particularly sad or disappointed. It’s likely that at some point my tics will change by themselves. This could make things much harder or much easier for me, but either way I know I’m in a strong position to make the best of whatever comes.