On Wednesday I had my second intensive session with my occupational therapist at the CFS/ME clinic. It will now be followed up by a couple of phone calls over the next few weeks. I have a folder full of information called 'lifestyle management'. And you can see why.
What I will be aiming for is a total change of lifestyle, and it won't be an easy one for me, especially as a minister's wife and active Christian, as I will have to deliberately withdraw from a lot of things.
The aim is consistency and routine leading towards stabilisation. Therefore, eventually I should be having four 'rests' per day, 30 minutes in length, spread over the day. These rests are not to involve any kind of low level activity, i.e. reading, watching television, drinking cups of tea but a total switch off - without going to sleep. They recommend finding your own relaxation aids to help you. They will be a challenge for someone with such a buzzy mind as mine. These rests should be at the same time every day regardless of week days or weekends, and notably in my case, Sundays.
Activity is to be managed by firstly measuring the amount of energy I use for certain things, and which elements I find most draining i.e physical, cognitive, emotional or social. Since I find social (on the larger scale, e.g. a big meeting or service) very energy draining it would be a 'high level' activity. High level activities are supposed to be reduced and broken down as much as possible so that I can find my baseline (the level of activity where I do not have any symptoms).
Once I have 'stabilised' by sticking to this baseline I can gradually increase different activities on a step by step basis, drawing back again if my symptoms get worse. It is about retraining my body to recharge itself, like constantly topping up a mobile phone battery so that it does not go flat. A person with CFS/ME will only have the equivalent of perhaps a quarter of the battery 'charged' in the first place.
This is not expected of me all at once. In the short term I am supposed to keep an activity diary, work out the best times for the 'rest stops', perhaps work on consistently doing one rest, and work out which activities are the most draining and need to be reduced.
The main conundrum is this: for things where I have control and choice, I can simply (!) stop and start an activity, break it into chunks, or reduce it in a way that results in it being classed as 'low' or 'medium' as opposed to 'high' energy. But for things where I don't have this element of control, any kind of event that lasts a set time, longer than I am supposed to do it, and running into 'rest time' I face a problem. This will involve some creative thinking, a lot of acceptance from me myself, and a lot of understanding from those around me.