.full of …nothing… I’m not even angry or sad. I’m just. Nothing.
I’m sick of this bed.
I want to go the fk outside. I want to go swimming.
Fk man I just want to get into the living room.
It is Sunday, technically, 1am…and I haven’t had a wash since Monday because the carers can’t wake me and it’s causing all sorts of stress in a marriage that’s not even a year and a half in.
I… can’t even explain to the decision makers how bad cr@p gets.
I tried this week with a psychiatrist I’ve waited 2 years to hear from…and she decided it was all physical and once I have the correct powerchair “things will be mich better”… not denying that may help but…how tf do I get to that day?
I’ve been waiting for more than 10 years for help with physical movements. It has culminated in me being now completed confined to bed and I have a bedside commode. (I wanted to write $hit bucket but… it’s plastic and it just reeks beyond belief. If you could smell a picture I would post it on Instagram to show people what’s REALLY GOING ON for the disabled people of Glasgow and the U.K… and we’re supposed to be a “developed country”…a phrase coined during the Cold War that really needs to change! THE U.K. IS NOT OK. It hasn’t been for a long time.
Stupid head is racing.
How dare I wish to have a shower at whatever time I’d like (or need…I’m not choosing this…I have M.E. in amongst other things)… people don’t believe I can sleep through someone trying to wake me… and when they first experience it they’re usually alarmed and want to call for a doctor. We laugh at that now (we DO NOT LAUGH AT THE PEOPLE)(we laugh at the thought that a doctor would be prepared to come witness this -they saw during my last hospital stay.
They did not seem bothered.)
I don’t know what I’ll do when I can’t argue the fact that gaming helps.
I’ve had to curb it because my wife finds it upsetting. She thinks I’d rather spend time playing with fun people and that she’s not fun…
But.. it’s not that. I’m checked out.
Also… the score at the end of the month gets turned into money for Mary’s Meals and I don’t feel like a completely revolting and selfish ‘human’.
I can’t properly see the games anymore -even taking the limits I had previously into consideration (I’ve always been partially sighted)…but, now it’s sending me right over the edge.
I wasn’t always the last to do things.
I didn’t always do nothing.
I used to be fun and funny -or so people said.
I used to run 2 10Ks a year for charities and now … I’ve been inside this flat since jan2020 and in this same fkn bed since june2020. A full year. Just in bed.
I don’t feel like a human. I haven’t for a long time.
The filming for Indiana Jones AND the next film with the flash in it were happening in the last few weeks ONE STREET OVER and we’re just completely invisible.
I don’t feel invisible when I game but I am scared at my vision loss and I can’t get to a fkn eye clinic (and I’m scared to go out at the best of times but now I don’t want to know the answers)
I know the answers. I’m losing more vision…
And I can’t think how it’ll be to have no vision and no walking and …all the phrases of “you should be thankful you have food” (I AM!) and “you should be grateful you’re not in a war-torn country” (I AM!!)
My heart feels like it’s breaking but my head truly believes that i deserve it.
