Hi momto3 - I know what you're talking about - I did it too, for a looong time. Gradually, I learned the old "oxygen mask" lesson. You know - when the stewardess is explaining how to use the oxygen mask if need be on an airplane. The instructions are to get your own on before attempting to assist a child or another person, because if you don't, you'll likely run out of air and be unable to help another and require someone to come to your aid.
My kids are grown, so it's easier to do now - but I think of my energy stores like a bank account. I try to conserve what I can and spend wisely, so I've learned to say no to activities and events and housecleaning etc., that were short on "funds". Sometimes this is depressing, inconvenient, and/or impossible to control, so I use a "credit card" when I have to, and do whatever anyway, but I do it knowing what a very high interest rate I'm paying, and start plotting right away about how to get it "paid off" asap. (naps, meds, extra help from others, curtailing activity, etc.) The goal is to have enough for everyday needs, with extra to spend on the occasional FUN stuff!
My hat is off to everyone dealing with children and family life with a chronic illness and pain, because it requires so much mental and physical energy. There are lots of rewards - but it's just plain hard.
Sorry - I think I may have come off as preachy here - which is not my intention. I just want to encourage you to consider not "doing something" all the time, as choosing to "do" something very positive for yourself and your body, and ultimately, your family. Like I said - I know exactly what you're talking about as I was like that, too, and I think oftentimes we do it because it distracts us from the pain and fatigue!?
And it seems to work for awhile.....but eventually, the coffers are empty.
I'm going to shut up now. But the fluorescent lights? That's another whole topic!