It's so frustrating not to be able to predict even one day in advance when I will be awake. Sure there is an overall vague 26-28 hour rhythm; but superimposed on that is this huge random element. Sudden unexpected bouts of insomnia at a time I thought I would sleep. Sudden overwhelming tiredness when I thought I would be awake.
The fatigue is a severe problem. The mental fatigue is worse than the physical. A few hours a day -- maybe -- I might have some energy but then hours go by in a fog.
I can't make appointments since I don't know when I will be awake. I'm currently way overdue for a checkup with my GP and having a terrible time figuring out when I can go. And the same applies for social life -- or what minimal social life I have.
And I totally understand the problem of wanting to work at certain times and wind-down or relax and socialize at other times and how hard it is to fit that in.
There are some N24s who feel reasonably OK if they follow their natural rhythm. Not me. My body is like an orchestra out of tune and with no conductor.
Sometimes I use sleeping pills to help me get to an appointment when I need to; but that method has problem of its own so I try to minimize it. And it often does not work. When my body wants to be awake it's very hard to put it to sleep. And equally hard to wake when it wants to sleep.
I feel like my life is a slow-moving disaster.
I wish I had an answer. In desperation I am trying the light/dark thing again -- it's not really working.
I feel a bit guilty reading A's post. I ought to be sad that someone else is going through this hell. But actually I felt relieved that someone else knows just how hard it is and that it's not just my imagination or some kind of poor management on my part.