‘How ME has left me grieving for the life I used to have’

I see people out running and feel a twinge of jealousy. They don’t know how lucky they are, to feel the freedom and exhilaration. That used to be me. I especially loved running in the rain, the water refreshing and cooling. I dream that one day I’ll run again.

In February 2018, I was diagnosed with Chronic Fatigue Syndrome (hate that name or ME as it’s also known, which stands for myalgic encephalomyelitis. It’s a multi-complex neurological disease.

It’s debilitating, unpredictable, and affects 265,000 people in the UK at a cost of more than £3.3bn to the economy, and yet little seems to be known about this life-changing condition, and a scant amount of money is invested in to research.

Despite the relatively recent diagnosis, it was in 2008 when training for the London Marathon that I first felt as if I’d got a virus that I couldn’t quite shift. I took time out from exercise – I also had a passion for lifting weights – until I realised that I didn’t feel any better by resting and decided that I may as well just push through. Besides, it helped me to cope with the overwhelming pressure that I felt as a single mum in business, and with no financial support.

Participating in sporting events gave me focus and helped mentally, and after the marathon my sights were set on a body-building competition, which was to be filmed for the BBC’s Inside Out programme. By 2016 though, I felt significantly more unwell with the addition of a persistent cough and lower back ache. I was exhausted, tearful and felt like I was dragging a concrete ball and chain around my ankles.

Repeated visits to my GP felt fruitless. Desperate for answers but not getting any, I under went some tests but the results were negative and the doctor simply shrugged her shoulders and told me that there was nothing more that could be done. I obviously wasn’t being taken seriously. But, on January 1, 2017, when I felt glued to the bed and unable to move, I knew that something was very wrong. Eventually, I was diagnosed with malignant bowel cancer. However, when after surgery to remove the tumour, I wasn’t feeling any better, it was back to the GP. Again, it fell on deaf ears, and the frustration nearly drove me mad. Clearly, they thought that it was all in my mind. I begged to see an immunologist. ‘‘And say what?’’ said the locum GP abruptly.

Begrudgingly, I was referred, except the GP didn’t hold out much hope that the immunology department even existed anymore. It did.

They asked for a timeline of every significant life event. It went as far back as 1976, and my parents’ acrimonious divorce. The list went on; my brother’s suicide, agonising life-changing decisions, miscarriage, mum and dad’s deaths, five lots of major surgery, becoming a mum, and financial hardship. My body had taken a battering, physically, mentally and emotionally. In short, they said I’d burnt out.

It’s been a long two years coming to terms with the diagnosis and it’s still a work in progress.

There’s been denial, grief, and now a sort of acceptance. Grieving for the life that I had and adapting to the one that I’ve got. It’s changed beyond recognition, and yet to the outside world it probably doesn’t look any different. People tell me how well I look, and I thank them with a half-smile. If only I felt it. When I tell anyone that I’m living with a chronic illness, they look at me as if to say, yeah right, whatever.

It seems that no-one really gets it, and less than a handful have asked how it actually impacts.

Some wonder if it’s ‘‘that thing where you get tired’’. I don’t know whether to laugh, cry or smack them. This is like suggesting to someone with depression that they’re a bit fed up. Some friends seem to have airbrushed me out of their lives as I can’t socialise in the same way that I could. It hurts. Others have decided how I feel and don’t invite me to things because they think that I wouldn’t be up to it. With careful planning and pacing myself, I would be; if only I’d been asked. It’s lonely and isolating.

At any one time, I’m dealing with numerous symptoms; fatigue (unbearable exhaustion), heart palpitations, brain fog, insomnia, sensitivity to light, sound and temperature, irritability, overwhelming headaches, and anxiety – to name but a few. I feel ill. All. The. Time. Some days I can’t get dressed until mid-afternoon, and the pinging of the microwave and phone notifications are enough to send me over the edge. Washing my hair is planned with military precision. It’s like flu’s come to reside permanently in my body. Every single text, conversation, or bit of social media takes its toll. I have to rest a lot, and additionally, time spent in bed has to be at least 10-12 hours.

Little wonder that the ME Association report a lower quality of life than those with some forms of cancer. I can vouch for that.

ME is incurable, but sufferers can have periods of remission. Occasionally, I feel ‘‘normal’’, but I still have to pace myself otherwise it’ll bite me on the backside. Hard.

On one of the worst days, my son had to remove the necklace that I was wearing, as I couldn’t lift my arms. There’s even been times when I’ve crawled up the stairs on my hands and knees or laid on the floor in a ball.

Many ME sufferers can’t even get out of bed. At least I’ve got a life, and I’m grateful. I still work, go to the gym and have dreams and goals, but ME has slowed me down; I’m now quietly determined and it’s healthier. Besides, my body’s made its mind up for me.

Tracey Barraclough is an inspirational speaker, health and wellbeing mentor and clinical hypnotherapist from Leeds.