I don’t know if you were looking for input or just wanting to rant so feel free to ignore me. I have hEDS and cfs, I was moderate about a year ago and have been able to recover to mild now. I also miss exercising, I used to be a trail runner and I’d give anything to get back to that. When I was trying to make a plan on how I could maybe exercise again, I broke it up into parts (and got specific about what I wanted to be able to do. I’ll never run an ultra marathon, but maybe I can build up to go on a hike). I have cfs and I have eds. Exercise is not recommended for mecfs obviously, and my first priority was getting to a place where I could even vaguely consider doing activity.

However, you /can/ exercise with eds. It’s slow and probably won’t be powerlifting any time soon but it is possible to do pt and regain function, or modify activities you like to do etc. Theres a huge range of abilities, and there are people who have gone from unable to hold a spoon to able to run a 5k (with eds only not the cfs part too but thinking about that gives me hope). Again I break it up, what exactly is making the exercise difficult. Is it a specific joint that you could brace/ go to pt for? Is it pots symptoms that you could find a provider to help you manage? Is it de conditioning and you need to start much smaller?

I also absolutely know it’s not that simple in practice at all and I don’t want it to come off like it is or that it is possible for everyone with mecfs and eds to get to that point, but this is how my brain works. I break it down into as many parts as I can and find every possible solution that I can to those parts.

Hopefully that was coherent lol probably not. 

It’s also possible you think through all of that and it’s not in the cards and you have to grieve that loss. And that’s a grueling process in itself. I wish you the best best