Yeah that’s what I don’t get. After 3 days you can barely think straight. I don’t know how the guy in China deliberately went 11 days without any sleep at all to watch a football game. It sounds similar to holding your breath until you die. He didn’t have fatal insomnia so I don’t get why he didn’t just automatically pass out before he died and slept.

Was about to say this too. Can’t tell a difference between most games made in 2013 vs 2023.

It can be frustrating when the world is a lot less accepting. I wish people wouldn’t judge so much.

I wish I knew about pacing sooner. I was under therapy for CFS/ME through telephone sessions and they really helped me especially with pacing. I still have fatigue but I’ve been better at being able to manage it and realise my limits.

I’ve had so many blood tests done when they were trying to figure out what was wrong with me pre POTS/EDS/CFS diagnosis

You described it so well! That’s exactly how I feel. I understand how frustrating it is, especially when it happens in public because people make so many assumptions. Thanks for the kind words ❤️

I have, but doctors don’t suspect it. I find my brain fog correlates to episodes of bad circulation/low blood volume, in that it gets worse whenever my blood volume or circulation is low/bad. How did they diagnose you with MCAS and is it easily treatable? Thanks

It really is. I’m aware of every mistake I’m making but it’s like trying to move my fingers rapidly when they’re too cold, I can’t stop it. Thanks for telling me about the ME community, I’ll check it out!

That’s messed up. I can feel your frustrations and I have the same thing too. My heart stopped during a tilt table test and I’ve passed out several times just from standing. I have to do so much just to maintain a low normal blood pressure.