Maud, I started having problems in 2003, but wasn't diagnosed with ME/CFS until 2005. Thought I was going loopy until I started talking to a chap who's had it for ages, and I was thinking, yes, that happens to me, so does that, so does that. Went back to my GP and he send me for loads more tests to rule everything else out, even went to a tropical medicine specialist, which made me laugh as I've never been out of the UK (I don't like heat, so I don't see the point in foreign holidays).
So I've had it for going on 9 years now. It IS getting better, I've become great at pacing and recognising the danger signs of doing too much. I think I'm starting to recover at long last, as I'm having far more good days than bad ones. The 'brain fog' I get when I've done too much I find hardest to deal with, I get very frustrated when I can't express myself.
I found the support group I was referred to by my GP was a great help, but I did go through a sort of mourning period for my old life - I was very energetic and sporty, riding bikes and learning to ride horses, aerobics and swimming a mile twice a week. ALL that went, one by one I had to give up the things I enjoyed. I was very bad when I had my first baby, sleeping at least 16 hours a day and in a wheelchair for the rest, I just didn't have the energy to walk anywhere!
I 'm much better than I was, just time, patience and learning to live with it I guess. Unless you have ME/CFS, you don't know what tired is. I got VERY fed up with people saying 'Oh, I think I must have that.....' when you have ME, you KNOW you've got it. It's not just doing too much and then feeling tired, it's waking up as tired as you went to bed!