#i know it. i SAW it in cfs and pots spaces while looking for advice and help
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honey-skulls · 3 months ago
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The fact that pots and cfs/me is incurable (I'm convinced that that's a lie, just like with "incurable" stuff like cancers, there is possible treatments, but doctors couldn't give less of a fuck about us and thus aren't doing research on what could help us) and this constant song and dance of fighting with parents and doctors to get help or even believed at all and going nowhere. And most importantly, that this is my new forever, and I'll NEVER be able to go back to what i could do only 2 years ago, is finally sinking in
And I'm only fucking 21, 20 when it started
I'm seeing people lamenting about not being able to do what they did in their 20s now, but i haven't even got to try adulthood at all before it got ripped away from me forever
How the fuck am i supposed to keep going knowing that no one will ever understand or give me help, i will constantly get not believed and pushed into crashes by doing the bare minimum, and everything i was planning and excited about doing because of the freedom of adulthood, be it learning new hobbies, travelling somewhere, or just where and how I'd like to move in and live in the future, has to be dumped in the trash
But yeah it's all anxiety in my head. Go take walks, loose weight, drink water, play less video games (i play around 6 hours a week) and go play board games at the public library, they say
Great
This is my new "life"
#usually those kind of vents never leave my drafts#but i'm so fucking done#if i keep getting pushed while refusing to give me the help i need#I'm gonna get stuck in a wheelchair at best. or genuinely bed bound at worst#i know it. i SAW it in cfs and pots spaces while looking for advice and help#it keeps happening. and i can see how the same thing that made them end up like that is happening to me#having to live in and fight this body is already bad enough#why do i have to keep fighting *everyone* around me on top#the more I'm forced to have to interact with government official healthcare like assurance maladie centers or the mdph (disability house)#the worst i get treated#so far. what I've seen is that the best way for me to get help is going to highly specific. rare. and scattered around the country. private#and expensive specialists#it's how i got my autism diagnosis after 15 years of running around therapist to therapist#it's how i (half) got my pots diagnosis after almost 10 years of being told I'm “just fat and don't do sports” (a lie on both front btw)#if i want anything. i need to avoid official infrastructures. save up money. and drive for hours. and hope that i win the coinflip of them#knowing what they're talking about#thought getting a diagnosis still hasn't gotten me any help. but at least i can fill up the official disability paper and wait for an answe#though I'm sure I'll have to fight with them too#cfs/me#pots syndrome#PROBABLY CAN'T DRIVE TOO BECAUSE OF MY DISABILITIES. SO STUCK RELYING ON PUBLIC TRANSPORT. OR OTHER PEOPLE TO DRIVE ME TO THOSE PRIVATE#SPECIALISTS. WHILE I HAD TO DROP OUT OF SCHOOL AND GENUINELY DON'T KNOW HOW I'LL POSSIBLY GET A JOB LATER. SO CAN'T MAKE MONEY#IT'S FUCKING GREAT. I LOVE IT HERE /S#vent#rant
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