Leftwing Idiot and I are hanging out at the castle – he’s watching TV while I write this post.
Earlier he made us a delicious dinner – a stew packed with fresh vegetables. Towards the end of the meal I started feeling surging sensations rippling up from the base of my spine. They made me wiggle about even more than usual. I was in my wheelchair so I fastened my seatbelt just to be safe. Several minutes later I felt the muscles in my feet go tense, first my left foot, then my right.
I knew it was the start of a ‘ticcing fit’ but I hadn’t yet lost my speech so I let Leftwing Idiot know my feet had gone rigid. By the time he got to me the tension had spread up through my body and I was stiff as a plank.
Still able to speak I apologised as he manoeuvred my un-co-operative body out of my chair and onto the crash mat on the living-room floor. I wasn’t able to help at all – every muscle was taut and pushing outwards towards my skin. I could hear the effort he had to put into moving my unyielding body.
As I felt my back coming into contact with the mat I realised I could no longer speak. The only noise I could make was a whine of pain driven by my now burning muscles. Leftwing Idiot began massaging my stiff and twisted hands straight, but it was a job he quickly abandoned because I began to retch.
My choking tic only ever shows up during a fit. It’s one of the most unpleasant and distressing of all the tics I experience. This time the forceful wrenching sensation came from deep inside my body and pushed up through my throat, making me gag violently and repeatedly. At times the choking was constant and left little room for breathing.
Leftwing Idiot quickly turned me on my side. He was careful to make sure it wasn’t onto the side where, from an earlier fit, I’d got a large carpet burn stretching down across my forehead and eye.
He reassured me gently as the waves of choking consumed my body and tears filled my eyes. It doesn’t matter how many times this happens it never feels any less shocking – but I’m getting better at staying calm, and while my body was moving relentlessly I concentrated on keeping my mind still.
As the choking subsided I began to shake, with eruptions of quivering going up and down my body, moving between my legs, stomach and neck. Suddenly my back twisted, pulling me into a painful position. Then it relaxed for a moment only for my muscles to tense again straightaway. This happened over and over, making my body jump about wildly. Leftwing Idiot responded immediately using the weight of his body to keep me still and safe.
After twenty minutes the fit shuddered to a stop and I was left feeling sad and exhausted. The only reminder of the ferocious fit is a stinging in my throat and a dull ache that’s spread across my body. This was the third very rough fit I’ve had today. It’s unusual to have such severe fits in quick succession and in the back of my mind there’s the worry that it’s the start of a new pattern. But there’s nothing to be gained by worrying about ‘what ifs’ and I know that whatever my body throws at me I’m resilient enough to manage.
Now I’ve taken the time to reflect on what happened and unpick how it felt, I feel much less upset and overwhelmed.
Poppy’s just arrived and she’s heating up the delicious stew, Leftwing Idiot’s laughing happily at a programme he’s watching on TV, and I’m ready to join them in relaxing and enjoying the rest of the evening.