I now work sporadically as a freelancer when I'm well enough.
Socially I'm more limited than I used to be, but I manage to get out.
Financially I get frustrated.
I share an apartment with a psychotic cat.
My ME/CFS Story in Brief:
In August 2005, I woke up one morning feeling like I had the flu. I managed to get out of the house despite this though, as I had an important selection day to attend for a chance to be part of the camera crew for the Commonwealth Games.
As it turned out, I was selected, but I never made it to a single event because by the time the Games began, I'd given up work and moved home with Dad where I spent a lot of time staring at the ceiling from bed. Why? Well, that's what you do when you're not sleepy but can't physically handle the stimulation of even a book or DVD. It. Got. Extremely. Boring.
I challenge anyone who ever responded to the concept of being housebound with dumbass statements like: "I'd just kick back and enjoy the holiday!" to spend three days staring at a ceiling. It will be educational.
There's more info on the ins ands outs of living with CFS on the About ME/CFS page so I'll avoid going into any more of the depressing details of it here.
I will say that it's been a very rough journey, both physically and emotionally, and that a lot more could be done to support people with ME/CFS by the medical community.
After the first two years I eventually started to improve. I don't know why exactly. I was trying lots of vitamins (I had a sackfull that went with me wherever I went) and I'd removed a lot of chemical things from my environment. I'd also moved in with Mum who lived in a newer apartment which felt a lot easier to breath in.
I went back to work for a while, part time. It lasted three years before the health problems took over again.
My health is now at about 60% on a good day, with stare at the ceiling days only occurring rarely. I pace my activity very carefully to keep it this way and tend to have mini relapses when I overdo things.
I think you have to overdo things sometimes though, even if it's just to test how far you can go. Just make sure you do it with a weekend in your pocket to recover.