Please don't take this the wrong way but you guys are actually pretty lucky. Why? Because of the way the fatigue strikes, how long it last, and you can actually (many times) do something about it.

With my disease I may be out of bed one hour or four hours and all of a sudden feel like I've been hit by a fully loaded dump truck. It's like a huge wave hits me, I lose all energy, endurance and stamina and become very weak unable to keep my eyes open or hold my head up.

That's when I've learned to literally crash. It may last an hour or four hours if I'm lucky, but upon waking I am not refreshed but hung over and sore. Meds have no effect on my fatigue or exhaustion either for more energy or better sleep.

I can drink two full 8 cup pots of coffee and still crash 20 minutes after finishing. My routine, like you guys, is no routine. I have no control over it at all. Sorry to ramble.