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

For the past couple of years, I’ve had to monitor and track my health more than I have in a while. With the introduction of Adenomyosis and then the Mirena coil, and now Zoladex injections, I’ve needed to keep symptom diaries again. And I haven’t missed it!

Because I compare myself to how I was, and can be, at my most unwell, I often give myself and others an incorrect impression of how I am and how I’m affected by ME. It’s just the way I’m wired; to see the progress and the positives.

But it also acts as a form of ‘gaslighting’ myself. Because I am by no means well. And these symptom diaries show that.

Yet I’ve become impatient and frustrated with myself that, because I am no longer in bed every day, I have it in my head that I am then at the other end of the scale where I should be able to do X Y and Z regularly and reliably and repeatedly.

I haven’t allowed myself for the huge grey area that is chronic illness. I got out for a scoot and a coffee a few weeks ago. I was home within the hour. And yet somehow I have confused that with being well enough to work in any capacity, and contribute, and be productive in a way that serves my family and society.

It’s still a Good Day if I brush my teeth twice a day. The goal posts haven’t moved all that far to an outsider. But to me, there feels like a whole new level of freedom.

My go to line is, that, for me I am doing remarkably ‘well’. I can shower more often than I can’t. My hair gets washed and the person washing it is me, bar the occasions I have to shout for help getting the shampoo out again because my arms can only be functional arms for so long.

This is such a weird and strange bubble to live in. But we’re giving it a good old go aren’t we? Together. Here online. We see someone standing up in a photo and we know that their mobility aid is likely mere metres away just out of shot. We see someone sitting up but know that’s not their default position. There is so much comfort in not having to explain every minute detail. Don’t ever forget that’s what we give to each other in this world that tells us we contribute nothing/little.