Wouldn’t it be lovely, I thought, to go to a bonfire this week and see a fireworks display? (Bonfire Night, Guy Fawkes and all that).
Then I remembered 4 or 5 days have passed when I haven’t felt up to having an assisted bath. How am I going to be up to going out, in the cold, surrounded by lots of people and noise and stimulation, when I can’t even manage to plonk myself in a bath and be washed?
I suppose it’s because fireworks are something I can watch and enjoy, passively, along with my husband and others. I want to be bundled up, wheeled out and shown something outside of the everyday.
But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.
I’m wishing to go out for a meal, or just eating anything I want to just for one day. Can I just have normal stomach and bowels for one day please.
I found myself daydreaming this week about what I would do if I was 100% recovered right now. I saw myself doing so many things and the more I did the more I wanted to do. Drive to my mom’s and do all those jobs that need doing, drive to my dad’s and help him lay that terrace and do all that DIY he can’t do right now, spoil my husband, clean my house from top to bottom, look for a job, catch up with friends and family, paint and sculpt all day long, make love.
No wonder my mind is whizzing with a hundred different thoughts yet I lack the oomph to make any sense of anything.
Do I cope well living with ME/CFS? Maybe. Do a thousand things never happen and everyone just has to live with that? Yes.