It’s taken an age to edit this post and try to get my feelings onto paper as accurately as possible. It’s still not quite right, but with an awareness that my cognitive function varies and is different now, I’m publishing it anyway.
I’ve been thinking a lot recently about how ‘stable’ things seem to be with my health. I am having easier-to-endure days. I am plagued by symptoms. But there is more of a pattern and predictability to them at the moment. There is more of a choice in how to spend the energy I have been allocated.
I haven’t been this ‘well’ since the summer of 2020; right before I relapsed back into the Severe category. I almost don’t know how to be this ‘well’…it’s an alien experience for me.
It’s bringing up a lot of Stuff.
Firstly, I misinterpret the ‘stability’ for being ‘well’ in the Not Chronically Ill sense. The imposter syndrome creeps in; I tell myself I’m a fraud. I compare myself to my poorly friends and the more severely affected versions of myself. My idea of ‘normal’ or ‘well’ is very skewed now. I’ve had M.E. for 15 long years and cannot remember what it’s like not to have it.
There’s also guilt at being one of the few that has seen improvement. There’s confusion at whether I’m actually ill because I just showered for three days in a row, for example.
There’s frustration at my apparent ingratitude. How can I feel miserable and moan about my health when I’ve had it so much worse?
I must consciously remind myself that I am not, infact, well by any stretch of the imagination; my body is just functioning a little bit better than it was.
Perhaps hardest of all is how unfair it feels. Why do I get this good fortune when my dear friends don’t? I’ve never asked “Why Me?” with regards getting ill and being ill. But I do ask it in relation to getting to see the restrictions loosen.
Those thoughts are dangerous though. They seep through my mind and try to convince me that I’m not ill at all; they don’t allow for the vast grey area between bedbound and spoon fed, and completely free of health issues.
But when I look at this physical progress and increase of functionality properly, I realise I’m actually not trying to do as much. I have removed even, the pressure to get dressed on the days I feel I physically can dress myself; something I had always, always tried to do since becoming unwell to differentiate between day and night and pyjamas and day-clothes.
I give myself whole days ‘off’; where there is no expectation to achieve anything at all, even if I physically can complete certain tasks. My hair goes longer between washes (but I can wash it myself now!)
Doing less is giving me more functionality.
This all means I’m not exceeding my baseline limits, or energy envelope, as often. (It is of course easier to stay within these limits when you’re not restricted by symptoms so severely, ie. when sitting up is classed as exertion it is very easy to push your body beyond what it feels able to do at a baseline level.)
My life is a constant balance of trying to savour, enjoy, and monopolise on this supposed stability, whilst being ‘careful’ and bracing myself for things to come crashing down as they could well do.
Thing is, I have very, very little trust in my health now. Less than I did before. I relapsed from moderate back to severe in 2020, and to say the rug was pulled from under me would be an understatement. The fear that it can, even likely will, happen again haunts my days actually.
Some days I’m doing quite well at only focusing on where I’m at on that single day. I think pre-relapse I assumed I’d just stay at that baseline indefinitely; now I know it doesn’t work like that.
I still couldn’t last an hour in any job we can think of. Neither my husband nor my family can find accessible, ‘easy’ jobs that I would be able to complete. Remember the six months to laminate 20 pieces of A4 paper…
So this is just a long-winded but gentle reminder to myself that I can appear to be just like those baffling non-sick folk, and that it’s ‘lovely’ to be where I’m at. But I am indeed still very ill; my self-awareness and acceptance, the removal of a faulty organ that caused so many issues, and the privilege of pacing, means that I’m managing my condition* fairly well just now.
*That is not to say that when I’m more unwell it is because I have mismanaged my condition!
'M.E. myself and I' by Anna Redshaw 