As has been discussed in an online CFS support group recently, the key to living successfully with CFS is pacing.
After almost a year of taking pain pills to help me sleep, I am up to having about 180 good minutes per day (a vast improvement over when I had 5-10 minutes a day). If I go over that, I know I'm going to feel terrible.
The problem is, it's not 180 consecutive minutes; it has to be interspersed with rest periods. Ideally, I'd do something 5-10 minutes and rest the remainder of the hour. Good in theory, impossible in practice. You cannot get to the grocery, through the grocery, home from the grocery, and the cold stuff in the fridge in 10 minutes. Not even if you live right next door to the grocery, which I don't. A standard weekly grocery run takes about an hour start-to-finish, and because I'm not able to do it 10 minutes at a time (Safeway takes a dim view of people napping on their floor), I know that I'm going to feel like hell the rest of the day, until I've rested enough to "refill the account" after the huge withdrawal I just made.
As we speak, I hear the cat knocking something down in the other room. I've already done my 5 minutes of physical activity for this hour, and my 5 minutes for the next hour is slated for food preparation. Depending what and how much she just knocked down, it might take me the rest of the day to get it all picked up. But even if it's just a simple matter of picking up a few items and putting them back on the shelf that Her Majesty wanted to sit on, it still means that what I had planned to do 2 hours from now has to be rescheduled, which puts me behind schedule. If she's made a bigger mess, then I wind up a full day behind schedule on my physical-activity tasks (which cannot take up the full 180 minutes,unless I want to spend the next couple days in bed with a pacing limit of about 10 minutes a day, barely enough to nuke canned soup and walk to the bathroom).
But I've gotten behind on my paid work due to an unscheduled crisis earlier this week, so tomorrow's entire 180 minutes should be devoted to catching up that, not whatever chores need to be rescheduled from today.
For more on pacing, read the writings of Ellen Goudsmit on Co-Cure, or easily googled.
But for me, it's time to lie down for my regularly-scheduled rest period so that I'll feel well enough to go fix my next meal. That's the reality of CFS. Not the myth that we "can do anything we want, except work because you don't want to do that".
(For the record, most of my blog posts are written off-line, a few minutes at a time over the course of hours/days/weeks. Writing them in one sitting would be too much not only for my CFS but also would cause intense wrist pain from a doctor-documented non-CFS problem, which would be disabling in its own right if the judge could see past the CFS diagnosis to look at the actual medical restrictions the doctors have issued which VocRehab says precludes doing ANY job.)