Having a chronic illness is worse than being in a coma. You wake up one day and 8 years of your life have gone by and you weren’t able to participate in any of it. And even worse you just have the memory of 8 straight years of suffering.

A decade for me. A DECADE.

Exercise Actually Makes Chronic Fatigue Syndrome Worse youtu.be/wxSwYUennBA?si… via YouTube

I've been 90-99% bedbound for nearly 3.5 years. People say "it's the vax" - I never got the vax. People say "it's laziness" - I used to be an athlete. No more excuses. We need help NOW. #5YearsLongCovid #HalfADecadeOfNeglect #LongCovidAwarenessDay2025

Sometimes it feels like there is a thousand miles between my thoughts and acting on those thoughts.

In 1945, six women pulled off a computing miracle. They programmed the world’s first computer—with no manuals, no training. Then, a SINGLE assumption erased them from tech history for decades. The story of how ONE photo nearly deleted computing’s female founders: 🧵

“I put in the work to get better” This type of condescension is SO insulting to those who have worked so hard at pacing. Don’t ever assume that very severe ppl are working any less hard than you. They are probably working a whole lot harder than you could ever imagine.

My teen is presenting to his classmates about #MyalgicEncephalomyelitis and the importance of #masking tomorrow. Please join me in cheering him on. 🫶

So sorry to hear of the death of Bridget O'Shea who had severe #ME This is a piece of hers on Substack, I’m sure a lot of us can relate to it. Another #ME death 💔 open.substack.com/pub/bridgetosh…

Today I'm supposed to be doing some gardening, picking the apples off the tree, taking apples to neighbours, and making an apple crumble for tea. Instead, I've been bedridden for 7 years. Thanks ME and its decades of deniers! #pwME #MyalgicEncephalomyelitis

In 3weeks I’ll be 31. I have never lived away from home, never had a relationship, never been out to work. I’ve not been on holiday with friends, or finished my education, or put down a deposit. I haven’t been out alone in 16years. I have #SevereME I will never stop trying.

When you become disabled there’s a few things you notice right away: Ableism is everywhere. People will abandon you. Even those you were certain would stick by you. Just because something is illegal or against human rights code doesn’t mean it’s not happening ALL the time

Imagine that you have a pretty heavy new and chronic illness that has changed every aspect of your life. Now imagine that you have to piece together how it works based solely on the commentary of strangers online. #MEAwareness

In disbelief reading this. As I’ve adjusted to my very-disabled body over the past 2 years, Alice Wong 王美華 has been a guiding light, an inspiration. Disabled ppl have to defend so ferociously their right just to exist. She did so with eloquence, rage, righteousness, joy. RIP 💔

I’m so saddened to learn this.