One of the issues that I find most difficult to deal with is the uncertainty of CFS. One moment my wife is fine, within an hour or so she can be completely incapacitated. To me it's just so difficult to predict and there is usually no rhyme or reason to it, although a certain amount of debilitation can be predicted after a late night on a bender!
A month or so back my wife took the car to collect the children from school and nursery, when she left she was tired but not unduly so in CFS terms. 45 minutes later she had to ring me from the car as she wasn't able to get out. Her hands had stopped working and her legs had turned to jelly, she walked like she was drunk. I shipped her in to the house and up to bed, a couple of hours sleep and she was much improved.
One of the things that irks me most is that we are no longer able to sail together. The last time we were on a boat together was shortly before my first daughter was born, 5 years ago. Sailing is something we were both brought up with and such a large part of our lives was taken up with boats and racing. I miss being part of the same team.
CFS does have a lighter side, I find my wife's word-finding difficulties most amusing. It does make me laugh when her sentences go random, and though I do see her frustration, I enjoy the challenge of trying to work out what she's on about. Add two children who also speak nonsense in to the mix and I am kept well entertained!