#severe me

[lovelyiguana]

I love telling ppl That yes masturbating causes pem sometimes bc that’s when they REALLY understand how much it sucks. BAHHAHAHA

[lovelyiguana]

It’s severe ME awareness month in August. I’M AWARE. WE CAN STOP NOW.

[only-knives]

im trying to figure out how to pace w severe ME since most everything can cause PEM

and so i found my pulse ox. i just did a little test while walking around my apartment to stretch.

even after prolonged seated rest, i can only handle a couple minutes of walking before my heartrate is over 100. ive done this test before too.

and since i dont only have POTS but also ME, i have to keep my heartrate below 100. i cant gradually recondition my nervous system with light activity. which is, frustratingly, an important treatment for POTS, since deconditioning makes it worse.

i may not be officially diagnosed w ME but it is obvious by now that i experience PEM. it was hard to tell before because i thought it was just regular chronic illness stuff. nope.

im guessing for me pacing means spending a lot more time horizontal and in the silent dark. but i cannot tolerate that for long. i have to move and do things or else the severe pain and emotional distress alone will make me deteriorate even faster than i am now. my body physically cannot tolerate immobility, which is why i wake up in agony every morning.

its like. there's no winning. but. i can at least keep track of my heartrate more and keep that down. my dysautonomia is probably the most disabling part of this aside from pain, since it affects my vitals, digestive system, cognition, strength, etc.

[myalgicencephalomyelitiscfstom]

Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time (2024)

Frontiers | Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopat

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents significant challenges in patient care due to its intricate multisystem

[iluvgargoyles]

hello people with mecfs who have nieces and nephews you can't see in person

what are you doing....how are you handling....how you connecting...

mine are all tweens or almost tweens and I've recently regained a bit of health from Hell Year April 2025 - April 2026 and I want to work on those relationships despite my brother (their dad) sucking very much and believing I'm faking my illness

[unpotty-trained]

Was finally able to shower for the first time in over a month cuz of this stupid ass illness, and well... Yeah. Highest my heart rate has EVER shown since I started using the Visible app and device to monitor my vitals and symptoms, and it's also the first time that I remained at exertion levels for the ENTIRE duration of the event...

I showed this to my mom and she said she's gonna help me wash myself from now on. I'm extremely grateful for the help... But it's just another piece of functional independence, gone down the drain... And it makes me fear my inevitable further decline all the more.

Let's just say that at my severity, laying in bed trying to relax is considered activity levels instead of rest. I'm kinda cooked at this point.

It starts with being unable to shower on my own, then I'll need help getting dressed... And then feeding myself... And then I'm in utter hell...

And God forbid I ever need help changing myself, I genuinely cannot see myself asking my mom to help me with that... I just can't...

I *had* to shower tho... I woke up with my arm itching and I went to scratch it... And there was SO MUCH caked up dead skin cells... Like, it was so disgusting and I felt like I had to prioritize my mental health over my physical, knowing it would eventually detriment both...

I'm just on a conveyor belt at this point, headed towards a woodchipper lmao. The only control I have over it is how fast the belt runs...

[the-normaler]

all the posts for disability pride month put a smile on my face. so nice to feel seen for a minute when being severely disabled makes you feel very unseen most of the time

[iluvgargoyles]

heyyyy guys can anyone with mecfs relate lmk what do I do haha