Living with CFS - establishing a baseline of activity

This has been THE most useful exercise for me as I progress through the illness. A baseline of activity is a level of activity that allows you to exist with ease, i.e. you have a stable routine that doesn't leave you completely wrecked, allows you to have a normal sleep pattern, or otherwise cause you to experience anxiety that can't be easily processed. You're looking for a level of activity that leaves you with a sense of 'I can cope with this.'

The baseline of activity doesn't have to consist of much and indeed my baseline is quite basic. It involves an activity in the morning, an activity in the afternoon, and an activity in the evening (when I say activity I mean something that is not resting, I don't mean hiking up a mountain). I also try to schedule some 'outside' time once a day even if I don't feel like it. In between activities, I have different modes of resting - cup of tea resting, radio resting, TV resting (not for long), meditation resting, sitting outside resting, staring into space resting, and so on. At some point, as I live in my baseline routine, I establish a level of existence that gives me a sense that I'm recovering and not making my symptoms worse, while at the same time being active.

It's not easy to live a baseline existence. I've had to cut a lot out of my life - working, socialising, doing anything that requires commitment, most activities that require concentration, exercising rigorously, indeed, many activities that are deemed normal everyday things. It seems extreme to live like this but it could not be any other way. After struggling to accept this as my baseline, I realised that this was all I could do to feel OK. Thankfully I have had sufficient support in my life to do this. It's also worth remembering that this is the baseline - this is the starting point for beginning again.

Living at a basic level for a while and knowing that you can sustain this basic level is a tremendous source of confidence. Once you've done it once and seen it work then you always know that there is a level of living that doesn't cause you harm and that allows you to start rebuilding your life. It becomes a safe haven in your mind, a place of being OK, and this is invaluable as you go through the ups and downs of the illness. You always know in your heart that you can be OK.


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