nadateturbe
The above is a link to an article about Sajid Javid's work on M.E. I hope Labour continue and prioritise this research. It's such a debilitating, life limiting illness.
It is indeed nadateturbe. And can be so misunderstood as a previous poster showed. I have been told outright by a couple of (non-medical) people that I haven't got ME/CFS! It seems to vary so much between people too.
I feel lucky that I can do 'normal' things using strong coffee as a sort of drug. That way I can volunteer in a charity shop once a week, do things during the daytime, run a sort of Airbnb type business, and dance every week. When I'm out doing these things no-one would guess I have ME/CFS, but what they don't see is what happens when I'm home, especially after doing something very active.
I'm also different from a friend who describes it as feeling like a lead coating on all her limbs. For me it feels like a lead coating too, but over my head; a physical feeling that brings me crashing down. I rest and sleep a lot when I'm home, and often when I've been out I literally fall into bed, still dressed and teeth uncleaned! Fortunately I live on my own; I simply could not cope with having anyone living with me and it would be intolerable for them.
When I was diagnosed (over 20 years ago), I was told that it probably had an auto-immune cause, especially as I also have Type 1 diabetes which is also an auto-immune condition. My friend goes down with colds and coughs all the time, but I don't ever seem to get them. Instead, I just feel more exhausted when they are going around, which is presumably my overactive immune system overdoing it again!
I can't push the coffee thing for too long though, just for a day or so, or an evening if I have to, but I find evenings really difficult, as I'm unable to get to sleep because of the caffeine!
I bet everyone on this thread who has ME/CFS will be affected in a different way; one day they may find that it is several different conditions.
