I went for my long-awaited appointment with a Neurophysio at the National Hospital this afternoon. My consultant had referred me for an appointment back in July and I’d understood this was because (like me) she was worried about the long-term impact my tics were having on my body.
But this wasn’t what the Neurophysio I saw today had understood. She made it clear she was only going to assess my ankle alignment following an injury earlier this year. The fact is, the orthotics team at King’s have largely sorted this already.
Leftwing Idiot and I have been waiting desperately for this appointment because the ‘ticcing fits’ are making my body and muscles contort, leaving me in pain and him and my other carers unsure what to do to help without causing harm.
We’d both been expecting to get some good advice today but I was just told they couldn’t help and they didn’t know who could. And this made me cry. I’d pinned a lot of hope on this appointment and the disappointment was overwhelming. It felt like they’d made up their mind about me before I even got though the door.
I don’t care which department gives us advice and help but until someone does, I feel I’m at risking injuring myself all the time. There may be no answers for this, as is so often the case with Tourettes, but at the moment I feel like I’m being bounced from one specialist to another, and each time my expectations and hopes are raised, only to be dashed.
“Pisshead donkey on the dusty road.”