You're such a good voice for us! thanks yet again.
It seems to me that sometimes I'm just not capable of explaining, of marshalling my thought, of opening my mouth, let alone higher order things like thinking about who I'm talking to and how they see the world and how xxx would be best put so that they'd get it..... It sometimes takes me years to develop a strategy on some element of communiation.
But, I also think part of the huge impact your writing h as for us is that when those around us read it, it's 3rd person. It's sort of like a couple needing a marriage counsellor - the 3rd party can remove us from our buttons, preconceived ideas ......... and provide objectivity. And somehow we tend to respect the 3rd person more than we do those close to us. I think it's the lack of clseness that permits this.
you definitely have - looking forward to it!
yikes - I could (as in possiblility, not ability) write for miles here - I've missed so many of the ideas I'd like to explore
one last one is about the fear this disease brings. The possibility of being left alone with nothing and not being able to survive is so real it's palpable, I can almost touch it. I'm so lucky that I have some amazing family and friends and am able to survive financially. When people do talk about ME/CFS, I've said "If I weren't able to survive financially, I'd be living on a couch in my mother's small condo or dead". They squirm and don't want to take it in.