Hi Steve I am lucky in that I haven't been fully bedridden for any long periods of time since I was in my 20s, so over 20 years now. That was back in the days where it was still being referred to as 'Yuppie Flu' and other derogatory terms and for most people there was no way to get a proper diagnosis. I was stuck in bed for many months, having previously been very fit and hard working and it was a huge shock, but I did come through it eventually and gradually rebuilt my strength.
I did recover enough for pretty normal-ish function though and went on to have good and bad times over the years. I have been very fit and working out daily to barely functional and everything in between at various times over the past 20+ years, but for the most part I am mid-range and get by via planning/pacing and accepting that I need to be in control, even if that means saying no where I once would have said yes and letting people down sometimes.
My own family are very understanding about it, probably because lots of us have similar-ish issues, but my PILs don't get it at all and are sure I am just lazy and inconsiderate of their needs/wants/feelings. I have learned, for the most part to not invest in their opinion, which is borne out of both ignorance and refusal to respect me (and my doctors for that matter) enough to trust what I'm telling them is the truth.
Re-bound is the pits - and the 48 hr crash was the one that used to get me every time. I'd just be cheerfully telling dh how I thought I'd coped better with x,y,z this time, when suddenly it got me and I'd end up in bed for days on end. I've now learned to plan to do as little as possible the day after any event/trip/appointment and then organise someone to help or just plan to stay in bed the day after that. That does seem to help keep me ticking over, for the most part. Dh used to book the second day off work, rather than the day after, as that was always when I'd totally crash and not be able to do anything at all. These days his job means he often can't do that, which makes things harder to plan/organise.
I'm glad you found a better GP, the first one sounds hopeless.
We now don't know if what I have actually qualifies as CFS/ME or has all been various forms of dysautonomia, possibly relating to connective tissue disorder of some sort. I was recently diagnosed with POTs and am currently working with a cardiologist on trying to get my tachycardia under control to see if that helps with the exhaustion. Apparently there's something funky going on with my heart rhythm as well though, so will be having that properly checked out in a few weeks. It's a complicated picture as many people with CFS/ME also have POTs and because my care was so poor early on, we really don't know which came first. If we can control the tachy and the exhaustion improves that will tell us it's primary POTs rather than CFS/ME with POTs.