For people battling chronic disease, sleep is a complicated thing. On one hand, we often don’t get much of it on an average basis. Or, at least, not quality sleep. On the other hand, there are folks with conditions like depression, or those on medications that cause drowsiness, who sleep a lot. Our relationship with sleep is one where we regularly swap between not getting enough and getting what many people call “too much.”I can’t count the number of times people tell me I’m lazy because I sleep 10 hours a night. Or the number of times people claim I’m lucky that I “get to sleep so much.” I understand that being able to sleep 10 hours a night might seem like a wild fantasy to many folks who only get to “sleep in” maybe a day or two a week, but for us, it’s necessary.
It took years for Danny to be told the medical explanation for that exhaustion – and yet it is by no means unique. While many of the physical and verbal problems are well known, “cognitive fatigue” is one of the most disabling symptoms of a range of neurological disorders – and an important barrier to recovering a more active life.