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.

Reboxetine-inspired blogging

So, my first ever blog. I'm not even going to try and avoid being a little emo, so like it or lump it. I decided I wanted to track my progress with the CFS/ME service I've just been referred to after three years of fatigue.

My first appointment was yesterday. After finding the place and a long wait in a depressing reception area, I met my assessor. This particular service is based in a psychiatric outpatient clinic at a hospital site which apparently used to be a "mental institution". Fab. There's even a euphemistically named "clock tower" which is blatantly an old watch post - it has the exterior balcony and everything. Way to make a girl feel welcome...

Anyhow, my doc was lovely. The appointment was surprisingly long, but apparently I definitely have CFS (whoop.) and to her credit she was good at explaining how they will be taking forward my treatment based on the idea that from an initial bad illness, I developed coping strategies which led to adverse mental side effects - e.g. Anxiety and low self esteem - which in turn impact on me physically. So it's a two pronged approach, focusing both on my physical health and my mental health. Makes sense to me anyway.

I also got a lovely diagnosis of co-morbid depression and anxiety. This was a bit of a 'no shit, sherlock' moment - after all, if you feel as crap as I have for as long as I have, it's bound to get you down. My new GP - who had arranged this referral - had put me on sertraline last October as the questionnaire she gave me indicated I was depressed. Well, I would rather stay on the right side of my docs so I went with it, despite some nasty side effects. Dry mouth and insomnia, par for the course. I can even -just about - cope with the horrendously vivd dreams where you wake up feeling like you haven't slept a wink. But it also affected me in a more personal area... Let's just say it's been getting very... Frustrating...

So, I asked the hospital doc if anything could be done about this. After all, the drugs had levelled me out emotionally a bit, but the side effects themselves were beginning to *really* get me down. After a fair bit of discussion with the pharmacist and that big book doctors always have which seems to be the bible of prescription drugs, they came up with reboxetine.

To fast forward a fair bit - I am now lying in bed, feeling pretty darn seasick, dizzy black spots whenever I stand up, and so decided to blog about it. Logical I know. Every symptom I have could easily be caused by this new drug - equally, I could have picked up any kind of stomach bug from being out and about yesterday. Who knows. I'm going with the 'more than coincidence' theory though. Anyway, I had a google of this new drug - and guess what: the latest, bmj published meta-analysis, suggests it's no better than placebo. And I'm a cynic, so I'm not great with placebos. But still - I'd rather put my faith in the NHS than in google, however mad that might seem.

So, this is going to be a record of my progress with this clinic and the various drugs. I also get to try GET - graded exercise therapy - the nemesis of inter web-based cfs support groups - so I figure it'll be interesting to see how I get along. For me anyway! I also plan to explore my new identity as a mental health service user - because I'm assuming I now fall into that category. Alongside all this fun, I'm also doing a masters, planning a wedding, and getting ready to bid farewell to my biggest source of support - my parents - as they head overseas for a spot of missionary work. No wonder the docs want me heavily medicated...