I came out of the crash 3 days ago, but obviously I’m ‘overdoing it’ (by that I mean basically doing fuck all 🙄), & running myself into the ground again.
I’ll never learn.
It’s hard. Especially because I know I’m supposed to be keeping my heart rate under 100bpm to give me the best chance of my ME improving, but how am I supposed to do that when sitting down & brushing my teeth puts it at 150bpm?!
My exhaustion & pain are creeping back up. I’m having a really hard time sensory-wise, & have had a lot of meltdowns for me this month (9).
Here’s my April stats:
Today has been one of those days where I’m mourning & full of grief. Those days where you’re really, truly sick of being disabled, y’know?
We all get them, it’s fine to get them, it’s totally normal…but it SUCKS!
God, I miss so much from my ‘old’ life!
I miss when I could shower every day.
I miss when I could get my own drink, run up the stairs, dress myself.
I miss when I could get out into the world EVERY DAY, when I could hike for hours *every day*. I got such joy from hiking, it was so calming & positive for me. I miss it so much!
I miss not having to rely on my wheelchair.
I miss not having to worry about terrain or steps.
I miss being able to walk hand in hand with my partner, sit next to each other on pubic transport, cuddle, talk – without having to yell over my shoulder because I can’t turn my neck easily, or constantly having to repeat things.
I miss being able to walk my dogs, play with my dogs, manage my other pets.
I miss feeling energised & excited at each new day, instead of exhausted and…’stuck’.
I still get out, I know I’m lucky. I have a fantastic partner.
I know I’m lucky.
But I’m still mourning a huge loss. I’m bedbound far more days than I’m not. I’m never symptom free, I’m in pain 24/7, 99% of my time is spent in bed.
I’m still grieving hard.
I’m grateful I can still get out on these short, rare adventures.
I know I can’t do even a tiny fraction of what I could 5yrs ago. I know when I push my body, even by doing such tiny slight things, I’m making my chance of improving slimmer. I know it’s extremely unlikely I’ll even recover to 70% of my old normal.
But I feel like if I try do even less, my life might as well be over. For me personally, I couldn’t live doing less.
I need to get outside, to manage both my autism & my mental health.
I need to find a balance that’s doing enough for me, but not doing too much for my ME, but it’s hard. Such a fine, fine line 🙄