You’ve reminded me of how much I hate that scale – different bits of me rate from 10-60/70%. I started regular outdoor swimming in lockdown, which according to the other bits on the scale I shouldn’t be able to do, but with the aid of powerchair, Motability car and hoist it’s possible. People who see me there often don’t understand that I can’t always do it, that even if I’ve planned to go I might have to drop out at the last minute etc. But I’m doing my best to educate! And I have some very supportive friends who do get it.

It’s hard enough being ‘judged’ by random people, but it must be so much harder for you when you are such a spokesperson for the community.

Take care.

Thank you so much for such a mindful comment Eva, I really appreciate it! Very well said – I’m so sorry you’re dealing with it too but really glad it’s helped you to feel less alone xx

This means so much, thank you for reading and for your kind words Belinda. I hope today is as kind as possible to you xx

You’re right, a few others flagged this on Instagram and I had them the wrong way around in the first paragraph – fixed now! Thank you for reading and hope today is as kind as possible to you xx

This means so much, thank you Colleen!

I was also thinking while reading about how little the percentages really describe anything. So many of us feel like we’ve lost 90% of our abilities even when we’re mild, because the things you think of actively “doing” in life are all lost right away (like full time work or sports or other high energy activities). But really the percentages are talking about things most of us take for granted until more severe chronic illness, like showering or making tea or talking. The word mild makes no sense in connection with people who are well, only in comparison with those who have severe ME.

Anyway sorry for the ramble. Thanks for making me feel less alone, and for helping to make the online ME/CFS community so lovely!