Don’t Pray for Me

My jaw had become locked open and my body was twisted by spasms in my muscles. I was at home, on the sofa, cushions and padding everywhere, with a carer in the same room. I should’ve been feeling safe but instead I could feel fear mounting inside me as the seconds ticked – the carer standing silently next to me.

She’d never supported me before, but one of my regular carers and I had gone through in great detail what to do if I had a ‘ticcing fit’. The contact details for King Russell and Leftwing Idiot, written in fat green pen, were on the kitchen table, and I’d made sure she’d read my care plan.

But she wasn’t following the plan at all. She hadn’t asked me any ‘yes’ or ‘no’ questions or tried to move my body in any way. Instead, she’d started, almost inaudibly, to pray. These whispered words, directed at Jesus, did nothing for me. I was in agony, unable to speak, longing to communicate using my blinking system and to be moved into a less painful position. I’ve never been so close to someone and yet felt so desperately isolated.

Then my choking tic started. I was on my back and she didn’t move me onto my side, which is what I’d already told her was necessary if I started to choke. Instead she was offering me water. I blinked repeatedly to indicate that wasn’t what I waned, but she didn’t respond. I’ve never tried harder to communicate telepathically than I did then.

My hands had gone numb through the spasms, my back and face were taut and incredibly painful, and I was crying. My phone bleeped and I used my eyes to try and indicate that she should call one of my emergency contacts. I can’t describe how relieved I was when she eventually called King Russell.

The relief was short-lived – I’d begun to choke again. Still on my back, the choking was so aggressive I vomited, choking on my own saliva.

When King Russell arrived he quickly got me onto my side, cleaned the vomit off my face, identified where I was in pain and set about dealing with this. The fit ended about ten minutes later. I was shaken and distressed but otherwise unharmed.

Because it’s Christmas many of my regular support workers are away so I’d booked in agency carers to cover some of the gaps. I’ve used the same agency for years and they’ve provided some brilliant carers. But this was the second distressing incident in one week and the situation felt very dangerous. I’ve made different plans to fill the remaining gaps and I’ve written to both the agency and my social care team, describing what happened to me and listing my concerns about something similar happening to someone else.

It wasn’t a particularly bad fit – what made it dangerous was the quality of care I received. More than ever it made me appreciate the sensitive and intuitive support I get most of the time.

Sadly, the work of carers is frequently undervalued, both in terms of pay and status. For me, day in, day out, carers keep me safe and enable me to lead a happy and independent life. Incidents like the one I’ve described are rare but they’re a sharp reminder of how critical these roles are and why it’s important that we invest in the people who undertake them and expect high standards from them in return.

Wishing you all a comfortable, safe and happy Christmas Eve.

Festive Outburst

“Who’s head butting Christmas?”

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