Mike, 40

I split my days into morning, afternoon and evening and I say to people I can do any two of the three.

It’s a good way of managing my fatigue, it helps dramatically to be able to say “no”.


Wissam, 34

Prioritise yourself, your mental health and your body. Don’t worry about what others think and don’t make concessions at the expense of your health. Do whatever you love to do.


Anne, 49

Balance is a problem because it’s a visible symptom and people might think “Oh she’s drunk, she’s doing drugs”. So I use a scarf around my neck to help regulate my walking.