I live with an awareness that things could always be worse. They have been worse. And they could get worse again.
That’s a weird, heavy, and sobering fact of my life with M.E.; an illness that, by its very nature, fluctuates.
If I don’t talk much about those early years with M.E. it’s because it’s just too hard to. Too painful. I have the support of a counsellor who is starting to help me unpick bits of those first years. But the trauma of still living each day with M.E. means I am essentially still very much in it.
When I talk about, or even hint about, my progress people assume I’m recovered.
I am not even close to being in remission but I have had the good fortune to see progress, since I was first ill and then again since my 2020 relapse.
My physical progress refers to me no longer, at the time of writing this (it can change so fast!), being in the ‘severe category’ of M.E.
When I first started making improvements I decided to label myself as “recovering”. It’s something I see online a lot with people who are early on into their chronic illness ‘journey’. I don’t see myself as in recovery or recovering anymore. I understand and truly believe that I will have debilitating health problems for the rest of my life. I do also have hope that things will stabilise and that I won’t relapse again. But that now comes with a big dollop of realising those things are mostly beyond my control.
I don’t have a concise or straightforward answer on how or why I have seen improvement. There have been no supplements or medications or treatments that have led to a slight lessening of the onslaught of suffering that M.E. symptoms bring.
Not fighting my body has probably been the single most important thing I’ve done. That, along with boring pacing and rarely pushing my luck. None of which would have been possible without a support system who looks after me and doesn’t expect or ask for things of me that I am too unwell to give.
It is circumstance and luck. You can’t bottle that up and prescribe it.
'M.E. myself and I' by Anna Redshaw 