Just Being: My M.E. Story

Thursday 31 January 2019

Michelle Mamode was a busy working mother when she became ill and was later diagnosed with M.E. She takes us though her journey and concludes with her insights into living with a chronic illness: “My life has changed. Being ill has forced me to focus on my priorities. I suppose that would be the positive way of looking at things. I try to do the things I really want to do and leave the rest by the wayside. I have tried to find new lower energy activities to replace those I am no longer able to do. I have managed to get back to work in some capacity. But I still have dark days where I lie in bed missing the person I used to be and wishing that I had appreciated my health when I had it. I suppose the trick is to appreciate what I am still able to do and make the most of my new M.E. life. So now, as I reach my fiftieth year, that is what I consciously try to do each day, with differing degrees of success.” You can read an extract of Michelle’s article, Just Being: My M.E. Story, in this month’s blog post.

This is my story. Or at least the version of my story as I remember it today. I never had a good memory and the M.E. has made my brain even cloudier. Sometimes, those clouds can be a blessing, lovely pink fluffy pillows of clouds, obscuring what I don’t want to dwell on. Other times, the brain clouds are looming and bursting with grey rain, dripping the occasional frustrated tear. But, just in case I am doing myself or anyone else involved in this story a disservice, I apologise in advance from my heart.

Five years ago I was living the working mother's dream / nightmare.

I don't know how you manage it all…
I couldn't imagine working and looking after three kids…
How do you do it?

I was on a rollercoaster, one of those old-fashioned ones where the safety bar feels slightly loose and you can hear the screech of metal on metal as you hit a sloping bend. My life kept moving forward in a blur. Babies became primary school children, kittens became cats, and carpets became more threadbare. I did not feel in control. Like life tends to be, it was a mixture of happy times, monotony, and problems. I didn't have much time to stop and think. I didn't particularly feel like I needed it. I never gave a thought to what lay ahead of me.

It started with the decision that I was going to walk from the school, after dropping off my children, to work as an attempt to get my steps in. I was a gym goer and although I never ran marathons, I prided myself in being as fit and healthy as the pressures of a busy family life allowed. The walk was an achievable goal, 40 minutes or so. At that time I was working part time over four days a week. I did not foresee any problems. I was anticipating that warm glow of achievement and accomplishment that you get after completing an exercise class or a gym session. That's not how it went. After about 20 minutes I began to get a strange feeling in my legs, a numbness. At first, I remember dismissing it, thinking I would walk it off. I couldn't quite get a grip on what it was, but I knew that I had never felt it before. I kept walking. It was as if I had pulled on some thick woolly knee-high socks which had been filled with some kind of numbing cream which was beginning to seep through the skin on my legs making my lower limbs feel as if they were transforming into cotton wool.

I didn’t walk it off. It was stubborn. I was unsure what to do. I stopped, but it didn’t go away. I leant up against a crumbling wall near a bus stop, conscious of how my behaviour may appear to passing strangers, or even worse, to people I knew, as there were other mums on the school run, coming and going in their 4x4s along the busy road beside me. I stood, feeling the panic welling up. I tried to be logical. Standing didn’t help and walking didn’t seem to make things any worse, so I focused on getting to work. I had to walk with full concentration on my legs, willing them to work and frequently brushing up against and reaching for walls, as I progressed at a slow pace. I had to keep imagining getting to my destination and the mental and physical relief that would bring. Work felt like a place of safety. Somewhere where things would return to normal. When I finally got there, I fake smiled, found a spare desk space and sat down to work. I still felt confused about what just happened and I didn’t feel that I had that kind of relationship with the people around me for me to pour my heart out to anyone that day.

It did go. The general practitioner explained it away as effects of anaemia. Anaemia was nothing new to me, but it had never affected me like that before. I tried to push my fears to the back of my racing mind. But it was only the beginning.

 

Please continue to Just Being: My M.E. Story for part two of this article.

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News

31 Jan 2019
Just Being: My M.E. Story
26 Jan 2019
House of Commons M.E. Debate
31 Dec 2018
18th Anniversary
17 Dec 2018
King's College Study
2 Dec 2018
The Sunday Times Article

 
 
 

News

31 Jan 2019
Just Being: My M.E. Story
26 Jan 2019
House of Commons M.E. Debate
31 Dec 2018
18th Anniversary
17 Dec 2018
King's College Study
2 Dec 2018
The Sunday Times Article