Having trouble sleeping so I thought I'd write a little about what a typical day is like for me. I think I get about 6 hours worth of energy if I take it easy. So if we take a day when I go into the office.
I usually feel very groggy when I wake up and it an take a while to be fully functioning. So I get up, get breakfast and dressed in a zombiefied state. Hopefully after I'm dressed I feel awake enough to drive. Getting up, dressed and driving to work takes about an hour of my energy. So that's only about 5 hours left. If it's a fairly quiet day and I don't have anything too strenuous to do that's going to last me to about 2pm. If the office is busy that energy won't last as long because the noise and distractions will sap more energy. Also if I have meetings or something I need to concentrate on that will also use energy quicker. So I usually reach the end of my energy just after lunch. From that point on I'm running on adrenaline energy. It's harder for me to think and doing anything feels like I have lead weights attached. I usually end up leaving at about 3. And then the drive home is about an hour again especially if I have to do anything on the way home. So that's at least 2hrs I've been running on adrenaline. When I get home I can can barely make it up the stairs. If I'm lucky I'll get a couple of hours sleep and that will give me a bit of energy to make dinner. Maybe even enough for a shower. If I'm not lucky I'll get painful muscle spasms that stop me sleeping. Or just unrefreshing sleep where I sleep but it doesn't make me feel better. On those days I still have to try to get a meal made and eaten. Most days I end up watching TV all evening because I don't have the energy to do anything else. Once a week I do dig back into that adrenaline energy to drag myself out to choir practice just because it keeps me sane. And then I try to sleep at night but again that isn't always going to happen because of the after effects of pushing beyond the energy I had for the day. And then it starts again the next day never having enough energy and always in pain. Knowing that there isn't any treatment for it sometimes it just feels like an endless drudge through treacle.