'M.E. myself and I' by Anna Redshaw

This is messy and muddled but I’ve done my best to make sense.

A couple of months ago someone left a comment on a now deleted post of mine (you know, the one where too many people misinterpreted it as being a declaration of recovery). The comment said “Be gentle with yourself. It’s almost as though someone told you this is a static condition, when really it’s very dynamic and changeable.”

And it’s allowing me to rethink and become closer to accepting a few things.

The rhetoric that the “CFS/ME clinic” used throughout the whole process was about adapting to where you are, steadily increasing activity, with the end goal of reaching recovery. One might plateau. One might have ‘setbacks’. But the aim must be for improvement. Relapses were a personal failing for ‘Pacing’ incorrectly.

Those who went before me, who I was saved by online, will have told me that it’s an illness that fluctuates. I know it fluctuates.

But I’ve often thought that with long term and/or serious illness, you have to be in the right headspace to truly hear things. And that’s obviously true for me, with this.

Although I consciously knew better, I think it was ingrained in me that this is a static illness. Even though I had the good fortune to know that recovery was but a pipe dream for me, I also believed that I would stay where I was at. There would be harder weeks, but my ‘baseline’ was my ‘baseline’.

I learnt the hard way, with a full blown ‘relapse’ from Moderate back to Severe, that it is not static after-all. I had done everything ‘right’ and still relapsed. The scales began to fall from my eyes…

Whether done through subliminal messaging or being told outright, I had internalised that one’s function should improve over time. Even though I knew this to be incorrect and impossible. At worst, one should plateau.

It’s made me think about the wording we use within M.E.

I was told to use the word ‘setback’ for any weeks where my function was below my ‘normal’. I’m seeing now, clearly for the first time, that there will naturally be days and weeks that are harder because Post Exertional Malaise is the nature of this particular beast.

I feel now, that the clinic using the word ‘setback’, made me internalise that one must always be moving forward towards that elusive recovered state. One step forward, two steps back, is still one step forward towards full health. M.E. doesn’t work like that.

I’m giving myself the grace to remove the idea of a ‘baseline’ from my vocabulary. There isn’t really a ‘baseline’ for me; not in the way the clinic meant it. I have always straddled severity categories, often during the course of a single day. It brought immense confusion, but now I see that my life and my illness is more complex than the M.E. scale and the ideas that the clinic had (about an illness they’d never actually lived with themselves).

The damage it did to be subconsciously analysing and judging myself each day is becoming clear to me.

At the moment I can get out of bed every day. I can use the stairs. I can sit up. I can hold and text on my phone. I can eat. But aside from that, nothing is certain or constant.

I’m not embarrassed that this has taken fifteen years to solidify in my mind. The level of trauma one experiences with this illness is astonishing. It will take years to unpick certain things.

So thank you to the person who gently helped me realise a few things. It’s brought me a lot of peace and is allowing me to undo some of the damage that the rhetoric around illness has done.