#pwme On behalf of my daughter, she has very severe #ME and strained her arm muscle a few days ago reaching for something. She now can’t move/bend her left arm at all and describes unbearable agonizing pain: dull/joint/muscle/nerve. Is this normal to have very severe pain?

With this illness, you don't just loose your health. You also loose everything you'd planned and hoped for. You watch everyone live a full live, have a family&career, while you lie there, clock ticking, the years passing by, without any change, feeling miserable. #MEAwarenessHour

every. single. cell. in my body is exhausted & in distress I’m so tired of suffering so much. #pwme #longcovid #mecfs

“Some days I don’t exist. My bed becomes a casket.” - Juansen Dizon I stumbled upon this quote the other day and it really resonated with me and what living with severe #me #mecfs is like. Especially days like today. #pwme

#MECFS can break you. It is so unbelievable hard. Your body becomes your enemy. Like a weapon to torture you. Only suffering. When I’m awake. In my dreams. No breaks. I am so damn tired of this disease.

I can’t even escape in my dreams with this illness. Starting last year, in every single dream I have, I’m sick with #mecfs & I can physically feel it in those dreams. Every. Single. Dream. The first time I had #mecfs in my dreams, it was jarring. Now it’s just the norm.

Saw a bit of the outside world today on the way to a doctor’s appointment. Never gets easier to see all the lives being lived while yours exists between the same four walls. Always grieving the time & moments you’re losing. #pwme #mecfs #LongCovid

The majestic Niagara Falls will shine turquoise to help us kick off #DysautonomiaAwarenessMonth on October 1st at 10:15pm. View in person on the Canadian or US side, or check out one of the many Niagara Falls web cams. #MakeNoiseForTurquoise

i haven’t felt well enough to be on social media lately, but i managed to write a short summary about the last year. hoping i can write & post more soon! #pwme #mecfs #POTS #chronicillness the-elephant-in-the-room.com/2022/09/20/sep…

#severeme is a life of existing, enduring, surviving and persevering minute after minute, hour after hour, day after day, year after year and for some, decade after decade. This is not how a human life is supposed to be. #mecfs #lymedisease #longcovid

Please know that if someone can't work due to a chronic illness or disability that's not a good thing. It's not living your best life and enjoying your free time. It's actually giving up on career dreams and having no financial stability. Please don't glorify it because it sucks.

One of the most messed up things about severe/very severe ME is if you injure or get PEM in a certain part of your body, it weakens the rest of your body at the same time and takes an absurdly long time to heal.

I will never embrace this life. It’s not OK to have to live like this. It’s not OK at all #LongCovid #MECFS

What has helped people get through Herx reactions upon starting #Nattokinase? I literally feel like I have the flu & it’s completely exhausted me/made me feel worse than usual. I’m trying to go slow, but even the smallest dose is causing a reaction. #pwme #mecfs #LongCovid

It typically takes a chronically ill/disabled person much longer to recover from viruses, infections, and surgeries. This is why we are oftentimes so cautious.

just wanted to post something I’ve written about how weird grief can feel when you’re ill the-elephant-in-the-room.com/2026/03/13/mar… #disabled #chronicallyill #chronicillness #severeme #MECFS #longcovid