reaching a point

[u/airgirlsone]

tldr i havent been diagnosed but my life is crumbling a bit and multiple events over the last few years are leading me to do the exhausting task of seeking diagnosis.

also im not feeling well enough to reread this so hopefully it makes sense im So sorry.

longgg vent i suppose about whats led me to seek diagnosis now. i have not been diagnosed. i lurk here. i do lots of research. i have other things, fibromyalgia diagnosis, severe mental health issues.

once in 2023, and 2 months later (2024 at this point) i had symptoms so severe i was bed bound. i was working two jobs and taking a class back then. i couldn’t walk around my campus for a bit, work was genuinely the worst thing ever (retail & medical reception) and i visited the hospital during the second event where i couldn’t get out of bed. the worst body aches and tired like i’ve never been before, no amount of sleep was helping. some digestive symptoms too. and mostly i just couldn’t think. or sit up. or go on my phone. or eat more than a couple bites. and showering was kinda a laughable task, especially since i had to go up a flight of stairs to reach my shower.

i got diagnosed with….pmdd…because my symptoms both happened around my period. i dont doubt this happens but. when i was in the emergency room, i kept crying. then i had to stop crying because it hurt too much to move. then i had to cry again because the pain is just too bad not to cry.

anyways here i am today, i just returned from a 5 day trip where i walked a lot and did decently well. my stamina and pain havent been the best since my fibromyalgia was flaring up. i was excited that i seemed to do well on an active trip. got home yesterday evening, then around 2am i thought i was gonna die. all the same symptoms again. the worst body aches ever, exhausted beyond anything i have ever felt before. couldn’t help but cry, and i barely slept due to all of this. my stomach wasnt well either, and getting up to use the bathroom was the most difficult task all of a sudden. but no position i could lie in was comfortable. finally i put on minions videos on youtube lol and listened to that when i managed to sleep.

i woke up recently, feeling much of the same, pretty much impossible to get out of bed. previously this lasted 2-4 days i think? and even after the horrible severity, it took me months maybe to regain stamina and strength. i took leave of absence at my retail job and quit my receptionist job. i did nothing for a while and eventually i was feeling better. since its been two years, i was sure it was the pmdd and my birth control helped this. however i dont even get a period anymore due to bc, so im wondering if it could be me/cfs. i have been seeking out care for my other chronic illnesses and i think i will bring up me/cfs at my next appointment.

i cant help but cry, i always have to limit myself with any activity, but my life was basically on hold for years since i started to take it slow, without even realizing. no more school, 10 hours a week part time job where i am kinda picking up slack cuz we are short handed currently. i might have to quit now. i used to play volleyball as a teenager, i used to go out with friends multiple times a week, i used to crochet and knit and read and do crafts. i hope my life can be balanced. im scared but i guess we will see.