Living with ME/CFS is... Explaining again and again what makes you this tired.
Last summer I went camping for a week in a pod, a kind of wooden tent, with a good friend, who knows about my ME/CFS and is very understanding.
When, after four days of vacation, I was tired up, this friend asked me: "What makes the holiday so tiring for you?"
So I explained that for me it is already exhausting to have to walk up and down to the toilet building a few times a day (a couple of minutes walking). That when we go somewhere, but first do some shopping, eat an ice cream and look at the Fair Trade Shop next door, that I actually have to rest to recover first, before we can do what we actually were going to do. And that going to a lake for a swim is top sport for me, because first we have to drive for half an hour, then have to walk for a while and for me swimming is heavy physical exercise. Etc, etc.
Despite her understanding, she had no idea. Now she has heard it, and has seen a glimpse of my life. But I'm sure it will not stick, because it is too strange, too unimaginable for her. And this is someone who is actually willing to understand...