babs

every day i wake up and i feel like this

Hi. I'm alive, but just barely. I wish I could be more present on here, but I can't even use my phone for most of the day. I'm slipping into very severe, and there doesn't seem to be anything I can do. I'm progressively disappearing 😞

‼️Hi! I'm still in need of ME advocacy in Spain or international ME advocacy. I'm severe and my health continues to decline. I'm afraid I may soon end up in the hospital and will need advocacy if that happens. If you're able to help in any way, please reach out 🙏🙏💙

It’s not that doctors have no protocol for ME, it’s that they don’t believe any meaningful protocol is necessary for ME.

Upcoming birthday this coming week If you can donate to me for supplements and survival as my birthday gift that would be amazing as I’m still not being given enough to cover my essential costs pay pal is [email protected] Hopefully have a give a little soon

guess i’ll never know if my connective tissue issues are responsible for my ME or if my ME is responsible for my connective tissue issues. having poorly understood diseases is just the worst. i want answers! i wanna know what is killing me. i’m entitled to that at the very least

and sadly, i’ve come to realize that the ‘uglier’ and less canonically feminine i look the worse i’m treated by everyone including health professionals. can’t even be free of societal beauty standards while dying

managing your health + medical appointments as a disabled person is a full-time job on its own and i am really not exaggerating

In an ideal world, even while we wait for treatments, we'd already have MECFS clinics where people can receive appropriate long term care and safety when they have nowhere to go. Doctors who can provide severe patients care at home. An ideal world of just basic humanity.

it's the worst being chronically ill and having to research all your own goddamn conditions while suffering from them 🙃

you can see how rotten a society is by the way it treats its most vulnerable

lately i've been wondering if my grandma might still be alive if doctors hadn't dismissed her so much. i know she was old, but every time she said something was wrong, they just brushed it off. i can't help but think she might still be here if they'd taken her seriously

as i slip into very severe, i'm terrified of losing the few things i still hold onto dearly. food, listening to a song, a short walk outside. i don't want to lose those too