Since Poppy moved out a week ago I’ve been living on my own. The pluses to this are that my night support workers now have a proper bed and some private space, and I have more space generally, which has made moving around a bit easier.
The challenge is that without all the informal support Poppy provided whenever she was in, I’m on my own for a lot more of the time. I’ve spent very little time on my own since I started having daily ‘ticcing fits’ more than a year ago. To plug the gaps when I’m without support I’ve rearranged the timings of my agency carers’ visits, and I’ve been relying on Telecare for what’s left.
Telecare’s a collection of services that use technology to help people with disabilities or health conditions stay safe and independent at home. For me this means an alarm system that connects to a remote ‘Smart Team.’ This team looks out for people all over my borough and arranges help for them whenever they need it.
I’ve got a pendent alarm that I wear when I’m alone and if I press the button someone from the Smart Team can speak to me through a box connected to my phone in the living room.
When I raise the alarm the Smart Team call Leftwing Idiot, then, if he’s not about, Fat Sister, and finally King Russell. If none of them are available or nearby, they call an ambulance. Besides the usual reasons why I’d want to avoid an ambulance being called, if one did come to the castle and I couldn’t let them in, they’d have to break in!
This is my first weekend without Poppy, and today was the first time for ages that I’ve used the Telecare alarm. Because I knew all three of my emergency contacts would be unable to come quickly I’d arranged for Claire, who lives locally, to be available and ‘on call’ if I needed her. She has a key so she can get in without breaking the door down. Leftwing Idiot knew she was on call and had agreed to get in touch with her if the Smart Team called him.
Early this evening I had a fit during which my muscles tensed and my body completely locked up. This is the most dangerous type of fit because of the risk of getting stuck face down and not being able to breathe – which happened very briefly not long ago.
Fortunately this time I was not completely face down, but it was close enough for me to realise that if I’d fallen at a different angle it could’ve seriously restricted my breathing.
I was able to press the alarm and the voice of the woman from the Smart Team echoed round the room – all I could do was make my usual ‘howwing’ noise. One by one she called my emergency contacts. First Leftwing Idiot, but he was somewhere with poor phone reception and missed the call. Then Fat Sister, but she was at work and missed the call. And for some unknown reason, on this occasion, she didn’t call King Russell.
Over the intercom she told me she was going to call an ambulance. In response I managed to force out a “No!” but I couldn’t manage much else. She listened, and to my relief, called Leftwing Idiot again instead of an ambulance. Thankfully he got the second call and was able to call Claire who’d been on her way to the castle anyway. Unfortunately though she hadn’t brought her set of keys, so she had to go back home to get them. It felt like a very long time before anyone got to me.
Although it was painful, this fit wasn’t too dangerous. Once Leftwing Idiot knew what was happening he stayed on the phone to me until Claire arrived. After the initial relief that it was all over I began to think about how different it could’ve been if I’d got stuck in a position where I couldn’t breathe. The Smart Team’s response might not have been quick enough even if they had called an ambulance. Although it worked out alright today, it was down to good luck rather than good planning.
One way to make the system better would be for me to get a key-safe. This is a secure code-operated safe that would sit outside my home containing keys to the castle so in an emergency helpers can get in without smashing the door.
For various logistical reasons, the location of a key-safe has required a lot of thought. Leftwing Idiot and I have come up with a good solution, but it’ll need a bit of time and money to sort out.
Today was a wake-up-call, and it’s shown me very clearly the gaps in the system that I need to sort out.
I know how horrible it is to be stuck face down and not sure if someone’s going to notice in time, even if they’re in the next room. I’d hate to be completely alone in that situation, with no idea whether help would arrive soon enough.
How long does this type of fit usually last? if it’s any consolation, if you did pass out from lack of oxygen your muscles would probably relax so you could get into a better position? are you eligible for any further support so that you’re not left alone at all? sounds scary, hope you get something in place to prevent this happening soon.
Thanks Catwings, the fits can last from a few minutes to hours. It can feel pretty frightening, hopefully you’re right and if I passed out my muscles would relax. I’ll try and avoid putting it to the test though.