#severe mecfs

[m-e-isannoying]

Me: i could do anything today!

*turns around in bed*

Me: *pulse at 120 bpm* maybe not today.

[the-normaler]

having severe ME will have you catching yourself unironically saying some shit like "yeah I've been experimenting with clipping my nails over the course of a week" and "I remember when I used to go outside," and "I wish it was possible to shower" and "I miss being in cars"

[canineoccultist]

Being chronically ill as a teen is this weird limbo where I’m not old enough for doctors to believe I’m in pain, but I’m too old for them to care or want to fix and treat the issue.

[m-e-and-me]

me/cfs awareness day (& month). i am very aware, i have severe ME. id like to make some informative post but i cant. but i can tell you what an average day looks like for me.

when i wake up i take my morning meds, i am in a dark and quiet room. i lie in bed until i feel well enough to get to the bathroom with the help of a mobility aid. i don’t turn on the light in there. if i feel well enough i will grab something to eat that doesn’t require preparation. i got back to my bed.

if i feel well enough, i can have music playing on low volume, usually meditation music, skyrim ambience or other music im very familiar with. i am laying in bed, in a dark, often quiet room.

i don’t eat lunch, it takes too much energy. i lay in bed, in a dark & quiet room. i scroll social media, i have colour filters and other accessibility features on my phone so i can tolerate the screen. i take my mid day meds.

if i feel well enough, i grab something from the kitchen to eat for dinner, something that requires little to no preparation. if im feeling more well than usual i can turn on the tv in the bedroom to play my favourite show; the volume and brightness are very low, but most of the time i still can’t look at the screen, but i can listen. the accessibility features aren’t as good as on my phone.

i take my night meds, i get to the bathroom if i can. i am scrolling social media if i can. otherwise ill just try to sleep.

sometimes i have good days, and ill overdo it & get PEM. sometimes i dont do anything, and still get PEM.

i am one of the millions missing.

[calistfsh]

congrats!! It’s disability pride monthhhh

shout out to my half conscious ppl (me) who can bearly use a phone!!! You deserve to be proud regardless for surviving ts

[daddysgoodb0y]

I try to act ok about it but i’m actually not ok with losing my life to these chronic illnesses after i fought so hard just to be somewhat ok mentally.

[a-totally-reasonable-username]

I've been taking lda - low dose abilify for two weeks now and the difference is shocking honestly. I'm now at 1mg a day (following my doctors instructions) and it's helping with the mecfs more than i could have ever imagined. When i started it i had been the most severe i'd ever experienced. It's slowly but steadily going back to moderate, even as i'm losing weight and the malnutrition is getting worse. It's helped with things i've had for years now. It's fixing my sleep rhythm without me doing anything at all. I wake up by myself now, i fall asleep when i'm tired, my sleep is more restful. I can handle light and sound much better again. This is only two weeks on a dosage i will be able to increase in the future. It makes me think that i have a future that isn't spent being bedbound. It's giving me some quality of life back and it's giving me hope.

[natandacat]

hey disabled people. what are my communication options if speaking is too tiresome for me, but i still have some movements (not enough that i think sign language would work tho it looks way too energetic for me). typing is usually my last resort but it gets difficult when holding my phone becomes a problem. Light keys keyboards are great but like. how does that work outside when im not in front of my laptop? would love ideas. my main communication limitations are intolerance to effort & weakness. also when i speak i cant help but emote which also fatigues me really fast