I don’t feel like I’m getting much right at the moment. Even viewing things like that, right v wrong’, is missing the mark.
Am I doing too much? Too little? Am I leaving enough days between doing things? Am I going to bed too early? Too late?
Life with chronic illness isn’t as straightforward or simple as I’m making it out to be by viewing things that way. It’s far more nuanced and unique and changeable. Each day the goalposts change; you can rarely apply what helped alleviate some symptoms one day, to the next day. And it’s something I’m still learning.
Looking back, I see now that those early ME/CFS clinic sessions conditioned me to see my suffering as a failing.
To be 21 years old, incredibly incredibly unwell and be told that payback, setbacks, crashes, or relapses were all the fault of me not knowing my body well enough has apparently had a lasting effect.
It has stayed with me. Every day I will weigh up what I should or shouldn’t be doing, based on managing my condition. An element of this is indeed necessary to live this kind of life. But for me, it’s slipped into something more extreme.
Back in 2010 I was given a handout by the occupational therapist at the ME/CFS clinic.
It was about potholes on the road and how you have to learn to avoid them, stating that if you continue to fall into the same potholes despite learning the ebbs and flows the road, then it is entirely your own fault. I haven’t thought about this particular ‘nugget of wisdom’ [sarcasm] for a very, very long time. But a recent counselling session bought it to the forefront of my mind. A very quick Google search shows me that this pothole analogy is something that is used regularly with addiction recovery. Why on earth was this given out, to someone with M.E.?! (We know why; the psychological-isation of this illness.)
Until recently I had no idea how much I’d internalised the information on that sheet of A4 paper.
So I’m saying this aloud to myself: this isn’t your fault Anna. You are allowed to ‘get it wrong’ sometimes. (Even just writing that has caused me to want to write a big “But…”)
Still learning and unlearning and relearning as I go.
'M.E. myself and I' by Anna Redshaw 