I know every single tile on my ceiling. When I was 11 I got glandular fever. I was promised id be better in 6 months, 6 months passed and I got told a new diagnosis CFS, my mother argued M.E. but the doc that diagnosed me didn’t believe in M.E. he believed we were fakers from the beginning… All they gave me was CBT [cognitive behavior therapy] and home tutoring. I was bullied, rejected, ignored, gaslight. This has never changed. Sadly, 16 years later I just went into denial- internal ableism is a bitch. But 4 years ago I relapsed to severe again and haven’t recovered. I have no independence. I cannot walk on my own legs; I suffer severe pain nerve a muscles, I need to be cooled then heated. I’ll crash, I forget where I am, I cant count I forgot how to walk write and read till I retaught myself and still halfway there on typing. I can’t work, I do art for a living because it always helped but even that can be too much.
Everything is too much; I’m very isolated. I’m very luckily my family always been there but you cannot understand this unless you have it, I wish I didn’t have to fight doctors its gotten better but the denial I delve into lead me to this relapse and that could of been avoided I was even scammed into a cure at 17. Its insidious, but my partner my family my friends that have accepted me are here now. I just wish I could be with them more. I can count every tile, but, at least now I get to see loving faces look at me and sometimes its me looking back. I am proud and my life has joy, but this doesn’t remove the pain and problems and isolation I suffer just because there is no funding.