Prepare for epic post. I'm not doing too badly at the moment, which is nice - but always tempting to overdo it. In particular, I can tell I'm feeling better when I start to get all antsy about the housework and start to NOTICE all the piles of crap that don't get dealt with if I don't do them. My husband says things like, 'Don't go into activity mode now, it won't do you any good' but it is hard to refrain when it annoys me so much.
I have a cleaner who is an absolute godsend - she just does the sensible things and gets on with it, and is very good about me sometimes being in bed while she is here, etc. I can tell you now that not every cleaner is like that so I am delighted with her. She keeps the house from becoming a total pigsty. I know I am very lucky to have her, but it was a 'condition' of me going back to work as I knew I would not cope otherwise, even before I got really ill.
Caffeine is helping - I had not drunk caffeine for literally years until a few weeks ago because I was too sensitive and got all worked up and panicky every time I had it, but now it is the only thing that keeps me awake some days.
I have been freaking out for months and months about the idea of 'What if I am like this forever?' Although I was enormously upset about the potential loss of basically all my hopes and dreams, the main crux of my worries was financial. I work freelance (can usually cope with about 3 hours a day, plus a bit sometimes, and with days off to rest), and I don't have critical illness or disability insurance. At present we can just about cope financially with me doing less work than usual. We can also go into debt (which we haven't really so far) in the short term if it looks like things will turn around.
But if this is going to continue, or worsen, what then? I've been ill for a year. My consultant said 80% of people are better in two years, but there is a real possibility that I have a progressive inherited condition, not just CFS. We could probably cope with another year of uncertainty (just). But if I am not going to be able to work much, or if working as much as I am will set me back, then we need to move to smaller, more manageable house, basically. Which will also be awful and tiring and would involve sacrificing a house we utterly love, but would set us on a more sustainable course financially.
I've sort of come to the conclusion that I don't have enough information right now to know whether we will need to move and that I should stop thinking about it for now and just try to manage the house and kids and working. We'll have more information about this inherited condition in a few weeks and that will be the time to make decisions.
Fuzzpig, I am haunted by your (much) earlier post about losing everything because of thinking you would get better quickly.
Grockle - I am just astonished by your ability to persevere and keep going. It seems impossible to me that you are working. I wonder if your child/ren can give you a lie in on a weekend? It takes a bit of forward planning and reminding but once they hit a certain age it can work. If you have an older child staying maybe they could just sit and watch TV with them from 6-9 one morning? Or could you send them to a grandparent for a 'sleepover'? Just thinking aloud, don't really know the logistics of your situation.
AU - I do think of your 'D'H as a STBXH, if I'm honest. He just seems to be emotionally stunted and unbelievably selfish. As soon as you have ongoing needs, he kicks off. I'm not surprised that you are looking at other places to live, what on earth does he expect? Even if you stay married but he is working away half the year, it would make sense to move closer to your work for your condition. Someone who loved you would be able to (or at least try to) have sensible conversation about this. It must be very draining to live with that sort of toddler-like self-centredness.
Anyway, I hope other people get some spoons soon.