Just Being: My M.E. Story





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.

I got a series of ‘viruses’, with a few weeks between each episode. Working in healthcare, I explained it away to myself that I was just unlucky. The symptoms seemed very similar each time; I felt like my body was on fire and my joints were filled with molten lava. As I always had done before, I worked through it. I prided myself on my sick record and being reliable. But, all the while, inside my mind I was worried. The thoughts whirled around my head. I knew something was wrong, but I had no idea what was happening to me and I was frightened to consider the possibilities. I remember finally one day it became too much, and I gathered the courage to ask a work colleague whether she had experienced a virus with burning joint pain, as we stood by the fax machine. I can still see the slightly confused and concerned look on her face as she told me ‘no’. If only I had known then what I know now. I still wonder whether if I had gone home to bed and just rested until I was better, that I might have avoided the oncoming onslaught of M.E. The alternative is to choose to believe that it was always going to happen. I’m not sure which is worse.

The ‘weirdness’ continued, and I continued to try and ignore it. I couldn’t ignore my arms and legs becoming numb as I drove down the motorway from Uxbridge. I was afraid of what was happening to my body. I remember getting through the front door and going somewhere to let the tears out. I could not understand what was going on. In the eyes of my GP this incident warranted a referral to a neurologist. The neurologist who, months later, smilingly reassured me that I did not have Multiple Sclerosis, advised me to take amitriptyline and discharged me from the service. I found it hard to match her sense of relief, as my symptoms were not improving. Her reassurances only added to my sense of impending doom.

Forward wind slightly to June 2013. It is my son’s First Communion family get-together at my house. I had managed these extended family gatherings before and on previous occasions had felt the relief as the last person left and gave me the chance to start putting the house back in order. This time, it felt like everything was in slow motion and the air had turned into a transparent gel that I had to fight through to get anything done. I tried to smile and be a good hostess, but the sheer effort of moving, thinking and even breathing was taking its toll. I fell asleep on the couch that evening, never having made it upstairs to bed.

I woke the following morning and my whole life changed. At first, I thought I had had a stroke in my sleep. I couldn’t move. My mind was racing but my body had turned to solid lead. I have never felt well since that morning, and that feeling has never completely gone. It’s hard to remember now how it felt to be relatively well. I managed to zombie my way through a few days of work, but I had to finally concede that I was a liability to myself and others. I was weak and shaky and couldn’t remember anything from one minute to the next. I came home, got into bed and finally admitted to myself that I couldn’t carry on. It seemed my body then heaved a sigh of relief and I spent a lot of time in that bed for the next year of my life. In fact, I still do. I was eventually diagnosed (it would seem to be by exclusion of anything else) by the M.E./CFS Service.

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.


Morning Yoga on the Grass
by Michelle Mamode

I step barefoot onto the dewy grass
The sudden crisp coldness sending a shiver
Like the first sip of an ice-cold gin and tonic
Or when I played with the teasing sea as a child
Socks and shoes removed and waiting patiently on the beach towel
I sprint bravely towards an empty sea
Into the creeping edge of the chilly water
Screaming with laughter as I ran back out
The sand rough between my toes

The same joy of living overwhelms me now
Stretching down to touch the blades of grass with eager fingers
Stretching up to gather warmth and light from the forgiving sun

Just Being
At its simplest and most beautiful