#millions missing

The one creative outlet I've been able to keep in a limited capacity is making music. I make it all on my laptop, using long chains of effects so that the physical maneuvering to make noises is small. "Bedsunk" is a time capsule from last summer. I wish I was better this summer. I wish I could look back on "Bedsunk" and not still be in that physical state. But here I am.

If you're looking for a way to support individuals with ME/CFS I encourage you to listen to pwME when we have the energy to advocate for ourselves & support those needing financial help. There is so much misinformation out there, and watching ME/CFS be the butt of jokes in 2026 is utterly devastating.

Support people with ME/CFS, support art and writing and research about ME/CFS, and wear a mask to protect the most vulnerable (and to protect yourself from post-viral ME).

Stop taking your health for granted. ME isn't only caused by Covid, any viral infection can cause ME.

HE'S AT THE SHERLOCK HOLMES MUSEUM ON BLOODY BAKER STREET!!!!!!!!!!!

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.

it’s hard to explain, but after living so much of my life with a disability, i have sort of stopped wishing for the life i had before. i was so young when i was able bodied that i can barely even recognize that was even me.

instead, i mourn this less disabled version of myself that i once planned for. when i first began thinking about my future as a wheelchair user, i pictured myself in an active manual chair, having a fully trained service dog, and working a low intensity job with accommodations.

recently i have been coming to terms with the fact that these plans i had for my life are just not achievable for me, at least not right now. and i am grieving the more functional, happier, and more palatably disabled person i could’ve been.

I am one of many who appear in this. Thanks to Anya for making it. 👏

@this.is.the.illness.m.e This video might take a few minutes to watch, but M.E takes years. Decades. Whole lives.

Today is May 12th, the International M.E Day. Living with M.E (Myalgic Encephalomyelitis) means missing out on life while the world moves on without you.

But behind every closed door, there is still a person. Still hoping to be seen. Still fighting to be heard. We made this video because we refuse to stay silent. This is what M.E really looks like. It’s painful. It’s lonely. It’s real.