What's your ME/CFS story?

I wish more people knew that fatigue is not the only and often not the worst symptom. It is a severe multi system disease with neurological, immunological, and endocrine symptoms (amongst others) that get worse with any exertion (physical, mental, cognitive)

I wish that people knew that fatigue isn’t just “being tired”. That literally everything (including just hearing sounds and seeing visual stimuli) drains energy, and has to be take into account when figuring out what I am able to do per day. That the worry of accidentally doing too much and not being able to look after my needs (Eg. Sit down and rest, go somewhere quiet) makes going outside or to unfamiliar places very scary and stressful. It’s like a count-down timer starts every time I leave the house, but I can’t see it or figure out how much time/energy I have left until its too late.