Pacing in 'recovery'

I find pacing really difficult. I am in recovery from CFS and my symptoms are fairly mild (to moderate during 'bad' periods but I've never had severe, long term bed/housebound CFS), meaning I have managed to study since late 2008 (on university programmes which don't require more than six hours' class time a week). I even planned - and took part in(!) - my own wedding this past year so all in all I'm doing pretty well, although every couple of weeks my body feels like it's going to fall apart, I don't really have a social life and I still can't manage a full day's activity that doesn't involve some sort of resting opportunity during with a free day or two after to recover. But all in all I know I'm pretty lucky.

Some of my recent improvement has come from being treated at the West Yorkshire CFS/ME service and a new medication which - according to my pharmacy friend - acts like a stimulant, although it falls into the antidepressant category. They are trying to teach me pacing, but I don't feel like I'm getting along with the concept very well.

The problem I have is that pacing seems to assume we are all able to control our days perfectly. Which is hard enough if you don't have kids/are signed off sick and have a live-in support system - but it just seems impossible to adapt when working (or in my case studying) with external deadlines/demands on your time. In my experience at least a binary system operates in many people's minds (including my own to an extent!) where if you are not 'off sick' then you are therefore completely fine. Pacing doesn't allow for your toilet to unexpectedly block and overflow all over your bathroom, meaning you have to do some heavy duty bleach-based cleaning without the help of a mop because that got destroyed trying to soak up the original flood. Pacing doesn't answer the doorbell/phone for you when it goes during one of your relaxation periods. Pacing doesn't let you timetable in all the emotional work that comes from going through a lot of major life transitions all at once.

As a person who is neither completely sick nor completely well, I feel like I sit in a gap of service provision in general, and the way things are going with the benefits system the idea of a relapse back to my symptoms the first year I was unwell terrifies me - I qualified for incapacity benefit then, but having read the new ESA  descriptors I don't think I would have qualified if they'd been in place. And the scholarship I have (to complete a Masters degree and then a PhD research degree) doesn't seem very flexible in terms of taking time off sick - sure, I could decide to take time out, but if I did my money would stop and not restart til the next appropriate university semester - and what am I supposed to do in the meantime, live on thin air?! The stress from these kinds of worries doesn't help my symptoms much either.

So pacing is supposed to involve establishing a baseline so that you can reduce the boom/bust cycles - but when you know your baseline is lower than the necessary minimum activity levels to carry on studying (on top of looking after myself - and yes I have a cleaner/someone who does my laundry so looking after myself = cooking healthy meals, personal hygiene and maintaining a good relationship with my partner), it all starts to seem a bit impossible. What do I cut? So I try to 'pace' best I can by allowing little boom/busts that I can keep under control, but I don't know if I'm storing up a full blown relapse for myself in the future. The other alternative is to sacrifice either my source of income or my social support and I believe the fall out from doing either of those would be equally if not more relapse-triggering. But I'd love to know if anyone's got it all worked out.