-
I've been through this, admittedly when I was much younger, including lots of time spent at UCLH (back when there was still a building on Mortimer St) and a heavily disrupted schooling/adolescence. I emerged at the other side with a 3+ year hole in my life and a profound sense of social isolation but things sort-of came together eventually. Appreciate that's not at all useful. In many ways the diagnosis is helpful because you have something to pin issues to and work with, but in others it's useless as it doesn't really provide any guidance as to where to go next. I don't really know what the magic bullet was that fixed everything for me, but there was a lot of control of what I was eating towards the end which may have been contributive.
6pt-
Actually, that really helps, thanks for that.
The main problem I have right now is trying to get my round the 99% of the material on the interwebs about it being absolute doom and gloom and "you'll be fucked for the rest of your life" and "you'll never ever improve and nothing will ever cure you so you need to get used to it" and so forth. There are very few positive stories with people saying, hey I had that, but I got better - so I can't over-emphasise how helpful it is for you (of all people on this endurance cycling forum) to be saying just that.
It's sometimes difficult to stay positive as I'm sure you can imagine, but stories like that give me a bit more optimism. So cheers - glad you got better to become the machine you are today!
bothwell
I get plenty of sleep and as far as I can tell it seems of fairly normal quality. One of the "standard" symptoms is "unrefreshing sleep", and that seems accurate - it's not the same as the insomnia or the waking-up-all-the-time tiredness types.
There's many more symptoms than just feeling tired, unfortunately. It's been hanging about for almost 2 years now, and supposedly most people get spontaneously better after a couple of years, so fingers crossed I'll make a miracle recovery soon and then achieve my dream of beating the Hour record. Haha lol. Seriously, though.