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

A cake with candles to mark the day my time with M.E. began. How truly indulgent of me, and I’m not a bit sorry about it.

There’s a definite sadness about this one. Perhaps, subconsciously, I thought the surgery would be a cure all and take away more than just my faulty uterus. Alas…

I realised quite early on that this wasn’t going to be temporary. This was my life now. Skipping a large part of the desperate search for a return to how my body and my life was, is something I feel so fortunate for. But still, 15 years later it’s startling that some miracle didn’t prove me wrong.

The permanence of this ‘thing’ is hitting me on this milestone. It’s not that this feels worse or harder than reaching a decade of M.E. back in 2020. Just that I feel like I’m really in the thick of it now. My body is too far gone, perhaps.

There’s real sense of loss for what might have been. Or perhaps rather, who [I] might have been. And it’s not just my loss, but a loss for those around me who are also missing out on the versions of me who might have been.

My shuffle around the grief cycle continues, and likely always will. For that is the human experience. It’s just that, with M.E./chronic illness/disability the things you grieve are quite unique.

And this post has nothing to do with a loss of hope. My hope changed a very long time ago. I hope for many things, but to hope for a full recovery, well for me that would be delusional if I’m truly honest with you. I will have M.E. for the rest of my life. The severity will fluctuate, but I will always have M.E. I have never passed the level of moderate ‘wellness’ that I’m currently at. Last time I was here, I relapsed for reasons we may never know. So I’m strangely grateful for the plateau, but I’m also allowing the frustration that would rather use “stagnant” to describe where I’m at.

I’ve learnt many lessons, some of which I shouldn’t have had to learn, especially when so young, over the past 15 years (or perhaps 12/13 years as I have little memory of the worst years). And rather controversially, I wouldn’t change it. I wouldn’t change any of it. I’m not one for frivolous or wishful thinking. I do not want to be unwell or have M.E., but I wouldn’t change having got it. Mostly because I don’t have the power to do that. 

To have had M.E. since 2010 is to be the person I am now. To have the relationships with my parents that I have now. To have met and married my husband. To have solidified friendships that cannot be based on physical outings, but rather true unwavering care and love. To have ‘met’ my online support crew who’ve brought comfort and joy and oh so much validation, that when people ask for advice as they try to navigate a life like mine, I tell them to get online if they can and find ‘their people’.

I’ll have a cry today. But the tears won’t all be sadness and sorrow. There’s pride in there too. And joy, somehow. The grit and guts of that 21 year old. She’s a hero to me.