Severe M.E Day- Miranda’s Story

I’d like to start with an apology, because this probably isn’t going to be as eloquent as I would like and that’s because the ‘brain fog’ which M.E. sufferers know so well is one of my worst symptoms. For me, it’s less like a fog and more of a complete sense of mental disorientation which is brought on by the smallest of cognitive tasks.  I can feel like I’ve just sat a three-hour exam after even a few minutes of conversation.  When it gets really bad, it feels like all my higher brain centres are shutting down and all I can do is rest and wait for them to come back online.

Miranda with Loki the cat.

I was diagnosed with severe M.E. over three years ago, when I was 29, after a bad bout of Epstein Barr Virus which my body just couldn’t recover from. My symptoms are like those of any M.E. sufferer (the earth-shattering, debilitating fatigue; the turbulent ‘brain fog’; the aches and pains and bouts of flu-like symptoms; the wildly fluctuating body temperature, etc), but they can be brought on by even the very smallest ‘activity’, like eating a meal, which is what makes me categorised as ‘severe’. I’ve been housebound since July 2016.  I consider myself lucky not to be totally bedbound, because I can move around the house a little and on most days I can even get out into the garden. But I can’t sit or stand for more than a few minutes without going completely dizzy and lightheaded and risking bringing on a huge wave of fatigue, and it is this symptom which makes my life so limited. I have to spend the vast majority of the day completely lying down. I rest, I meditate, I listen to audiobooks, I dream and plan the novels I will write when I’m eventually well enough.  If I’m really feeling well (generally about once a fortnight), we bundle me into the car (seat tilted back so far it’s practically horizontal, so I don’t get lightheaded) to get to the park at the end of the road, where I can lie out on the grass to enjoy the wonderfully restorative feeling of being out of the house. I’ve just had to resign myself to being that mad lady who lies down in the park, even in the middle of winter… Clinging on to your dignity is a futile and energy-wasting endeavour when you have M.E.

It’s a strange life and not always easy.  People are always saying they don’t know how I do it.  But the truth is that you learn to adapt, because you simply don’t have any choice. Yes, there have been times when I have been mired in frustration, wanting to rant and rave at the universe.  There have been moments of terrible and overwhelming darkness.  I have been scared and hurt, angry and bewildered, vulnerable and lost.  Being so physically dependent on another person makes you feel extraordinarily exposed, like a beetle on its back, unable to flip itself upright.  But I want to be as happy as I possibly can within the limits my life has set for me, and it is still full of love and joy and laughter.  These days I think of my life as a bit like being an elderly cat.  Resting in bed, resting on the sofa, resting in the sunshine in the garden, not up to much but still being cared for and loved.  My life may be different from yours, but it is no lesser.

I’ve lost a lot of my more peripheral friends as I simply don’t have the energy to keep in touch with a lot of people. But my family and my core friends have been wonderful and although I don’t get to see or speak to them as often as I would like, in a funny way I think we are closer than ever because their support has meant the world to me. It has been transformational for my relationship with my husband, because we quickly learned that we faced this together, or not at all. Going through this has been a huge challenge but has brought us incredibly close and we manage our strange new life with as much humour as we can. I can wash and dress myself but he often has to dry and style my hair, which is both a penance and a joy because I can’t sit upright for that long so he has to dry my hair while I lie horizontally on the bed and hang my hair down the side for him to reach. It is the cause of much hilarity and often ends in fits of hysterical giggles at the monstrosities he creates.  M.E. is make or break for relationships of all kinds and those that you keep are all the more special for it.

There is hope for the future. I keep as informed as I can on all the latest M.E. research and it’s taken three years, some bad experiences with ignorant medical professionals and a lot of false starts, but I have finally got the right team of health professionals around me and for the first time since I’ve been ill I’m actually making progress.  It’s been tiny, baby steps, snail’s pace progress, but it’s progress nevertheless. The mere fact that I can write this at all is proof – just a few months ago I could never have dreamed of holding onto a cognitive thread for this long. There’s always hope, and there’s life in the old cat yet.

Miranda Gill, August 2019