For a few moments earlier this evening I felt desperately alone and extremely vulnerable. It’s unusual for me to ever be on my own because I almost always have someone with me, but a mix-up this evening led to a gap in my care.
Fran was heading to the castle to do my night time support but I didn’t know exactly when to expect her and I couldn’t get hold of her when I tried calling. Leftwing Idiot was at his flat, and I sent him a text to ask if he was up for coming to help me if I got into trouble, but I didn’t hear back from him, and I didn’t want to disturb him by calling. I did phone a couple of other friends but no one was nearby or answering their phone.
I was sure Fran would arrive any minute and I was perfectly happy sitting on the sofa working on my computer. I put my helmet on as a precaution and made sure my emergency alarm was round my neck even though I wasn’t sure exactly who’d be around to respond to it.
I’d been on my own for about twenty minutes when I felt my muscles tense and an all too familiar feeling of intense discomfort surge up my spine and engulf my body. I knew then that I was just about to have a ‘ticcing fit’. But unusually, this time I was alone and didn’t know who to call for help.
My body was completely locked up and it felt as if every muscle in my body had turned to stone. I slid off the sofa and onto the floor where, fortunately, I have a soft shaggy rug which softened my fall. I felt a small wave of relief when I fell into a relatively safe space and wasn’t face down! This relief was short lived.
As soon as I hit the floor my right arm began to move frenziedly backwards and forwards. My knuckles were rubbing hard on the rug and I could feel them being burned by the friction. This useless, involuntary and painful motion was the only movement my body would make. I couldn’t press the buzzer round my neck or use my phone, which was on the floor next to me.
For the first few minutes I stayed calm and hoped the fit would end quickly, but as my pain and fear escalated I began to cry. It was quiet to start with and strangely distorted by the spasms in my face and the repetitive ‘How’ noise I make during a fit. But the fit didn’t stop and I began to sob.
I was very angry with myself for not making a clear arrangement with Fran and for not calling Leftwing Idiot to make sure he knew I was on my own. I felt utterly helpless.
I desperately wanted someone to come and be with me but at the same time I didn’t want any of my friends to walk in and find me in that state. There were a couple of lulls in the fit and each time I hoped it might be ending. But each time my arm began moving again, relentlessly dragging my knuckles across the rug, my feeling of isolation got worse and worse.
After what I think was about ten minutes my phone lit up with someone calling me and I could see it was Fran. I fought to make my moving arm grab the phone and slid my thumb across the screen to answer the call. I wasn’t able to speak or even hear what Fran said but I trusted that she’d hear I was in trouble and get help. I didn’t feel any rush of relief, probably because I was still too upset and overwhelmed by fear and shock.
Very soon Fran arrived with Leftwing Idiot. They moved me into a more comfortable position and reassured me as I continued to sob. Leftwing Idiot immediately saw my injured hand and he set about cleaning it up. I could tell he and Fran were upset to find me like this. Leftwing Idiot kept asking why I’d only sent him a text and not called.
Everything settled back to normal as the fit eased and my speech returned. Leftwing Idiot and Fran helped me wash my bloody knuckles and cleaned the equally bloody rug. We also established how the mix-up over the arrangements had happened – Fran had stopped in at Leftwing Idiot’s on the way to the castle and had lost track of time, and Leftwing Idiot’s phone had been in another room so he hadn’t seen my text.
Once everything was calmer Leftwing Idiot went home and Fran and I settled into our evening together. I still felt quite strange and shocked, but after about an hour and a half I felt better and said to Fran ‘I feel like I’m just about returning to normal now.’ ‘Me too,’ she said and we had a hug and some ice cream to celebrate.
What happened tonight was a stark reminder of how important it is that all my arrangements are clear and precise, of how quickly I can go from being fine to being in real danger, and of how even if someone’s nearby and on call, if I can’t raise the alarm it’s no help.
It also made me appreciate the amazing network of support that makes situations like this a rarity for me. Afterwards I thought about how many other people must’ve been lying alone and helpless on the floor at exactly the same time.
I know how fortunate I am to have support from a range of services and to have lots of friends and family around me. For many people, being alone and scared at home must be a much more familiar experience than it is for me. This is what makes good support so crucial. Protecting services from cuts is about protecting people from harm and we must never lose sight of this.
I’m going to make sure things are done differently from now on.