Ok, so, basically I am a full on “disabled person” right now.
I don’t really like talking about it, except to family and close friends, so I haven’t been blogging much.
That’s partly because I have limited energy and a lot of other stuff to do. Also it’s really fucking boring. Also that sickness-blogging can be kind of insidious and evil, so I am trying to resist the temptation to “go there.”
For people with conditions (CFS, Fibro, EDS, POTS, blah) that doctors aren’t great with, where there’s no “cure” and not a lot of sciencey research, the loudest remaining voices are people personally recommending things. Things with no evidence base that are often expensive and unhelpful. Don’t get me wrong, some of it’s useful… but also some of it is snake oil and some of it is eating disorders rebranded with Instagram photos (yay!)… (or NOT).
So, like I say, I don’t really want to add my voice to the cacophony unless I have something really useful to say.
A general update: I am making progress with doctors and just at the start of a few new treatment programs and feeling fairly optimistic. I have accepted that I have some underlying conditions which won’t ever go away, but I don’t think they will stop me getting well enough to skate… in the medium term. I am still attacking life kinda head on, it’s just that I’m only doing that for a few hours a day right now. But the rest of the time I get to watch Netflix and play clash of clans. So hey, it could be worse!
And yes. I still want to be a Derby skater!!