And so, we wait.

My speech to text programme is basically saving my life right now, since without it I’d not be able to communicate at all.


I spent yesterday in bed, slipping in and out of conciousness (80mg of morphine, 6mg diazepam), incapable of function thanks to the sedating effect of the analgesics and the antispasmodics, but still in pain. Eventually a friend came over and picked me up, relocated my hips and shoulders, then my partner came home and fed me and spent the rest of the night looking after me.


Currently watching a programme about mobility scooters, and they’ve just mentioned “palliative care”. A woman in her sixties, saying that it feels wrong that she’s only recieving palliative care, and that that means she’s got nothing to look forward too. Another is in her thrities, more like me, vey depressed by her condition, but desperate to keep trying. I’m recieving palliative care too – the best they can do is keep me comfortable. Getting better is all down to luck, and remembering to do my exercises, and not getting too despondent. There’s an older chap as well, and he basically regains some indepenence by getting his mobility scooter, and that makes me kind of happy- That there IS something that can be done, sometimes.


Anyway, tonight (I’d nearly forgotten) is a meeting of the EDS society. If I go, it’ll be my first one. I’m currently a bit terrified to go, but on the other hand, it’ll be good for me. Probably. I don’t really know. I’ll report back, anyway.


Tomorrow is my Open University German tutorial as well, 9am at the local polytechnic. My tutor knows that I might not make it, but she’s agreed to send me the handouts and do an online tutorial for me if I can’t.


For now, I have homework to do.


Oh, and a bit of good news as well;


Just a reply saying “We’ve got your complaint and we’re going to look into it” but it’s a start.



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