Thanks, cfskate, that's interesting. Although very hard to implement, I fear.
I find it so frustrating that even DH, who has worse CFS/ME than I, can't respect my "energy envelope". I think I'm better at being aware of my energy levels than he is, so like yesterday when he mentioned about a fair this weekend that he might be able to get a few scarce tickets to, I could tell he was disappointed when I responded equivocally -- that it sounded fun, but if I went, I wouldn't be able to do household things we're counting on getting done in the next weeks, and that it broke my 2-weekends-in-a-row rule, as I did stuff last weekend and have stuff planned for the one after. And I also mentioned that I thought I had overdone it this weekend, but I wouldn't know until Wed afternoon. Unfortunately, now I know and I did :(
I think he wanted me to be enthusiastic about this chance to go to the fair. I imagine if it were him, he'd be enthusiastic, but then get to that morning and say he's too tired and not go. But I know I'll be too tired, so I can't summon up imaginary enthusiasm for something I know I shouldn't do. I do tend to do what I plan, and I don't think I can change to his pattern. I hate that I am always raining on his parade and being so negative about doing stuff.
But I'm doing too much already and really can't do anymore. It's already a fight against my own inclination to do fun things and things I enjoy, and it makes it even harder to also have to face his disapproval of my need to conserve energy. I guess that even though he is sicker than I am, I work full time and he isn't working at all now, so he has much more "home energy" than I do and I'm always the one saying no.
Sorry for the complaining here. But it's just been getting to me, and my head is so fuzzy now I'm completely not capable of working.
And then that article really hit a nerve. Does anyone who works have a way to manage it? This bit:
"I took about a week off of work, and then went right back. And I kept showing up to work even though I was so tired that I had to put my head down on my desk for ten or fifteen minutes at a time, several times a day."
really struck me, as that sounds like me, except I never took any time off. I have told people, and have asked for a small reduction in responsibilities, but which is unfortunately to offset a larger increase. I just don't see anyway to limit my working unless I truly am incapable, as the culture just doesn't accept that. But I don't want to end up worse, as like the article's author, I feel I have a mild case now.
Anyway, how is everybody else doing?