My name is Anne, and this is my ME / CFS story

Wednesday 13th June 2012. 

I was sitting in a small, cramped office in Hemel Hempstead, having yet another meeting with my colleagues, trying to figure out how the hell we were going to hit the impossibly high sales targets that year. Having the same conversations and the same ideas that we always had. So far, so normal. But something was different.

I’d been feeling a bit unwell the past couple of days and assumed I had picked up the cold that my husband had just had. Through the course of that two-hour meeting, I started to feel worse and worse: sweaty, shaky and just not too good. My boss kept telling me to go home, but I declined, insisting that it was only a cold, and that I’d be ok. Well, I deteriorated fast, and so eventually gave in and went home to dose myself up with Lemsip and Vicks, and wait for it to pass.

But I never got better. This was an illness that was to last almost six years.

woman sat with her head resting on her folded arms in silhouette by the sea at dusk - the isolation of a chronic illness

Four months later, I was diagnosed with Myalgic Encephalomyelitis (ME / CFS). I was suddenly propelled forward into a new world of ‘having a diagnosable disease’. Should I feel pleased that now I knew what was causing all my baffling and frightening symptoms? The constant, grinding exhaustion that felt like gravity had become three times stronger, the debilitating brain fog that felt like my head was buried deep in bubble-wrap, the dizziness and loss of vision every time I stood up, the lightning bolts in my brain every time there was a loud noise or when someone got too close to me physically, losing feeling in my hands and feet, and just feeling like I wasn’t really there anymore.

Well now we knew what it was! It had an actual name – a really unpronounceable and unspellable one - so the doctors would be able to solve it, right? Right? Wrong.

The relief of being diagnosed with something that didn’t seem as terrifying as what my mind had been conjuring up the last few months, was soon replaced with a new terror…that this was how I would always be.

And this terror was fed well. I remember sitting in front of a locum GP, bursting into tears of disbelief and frustration when he told me that there was nothing they could do and that I would have to just go home and live with it. I also remember hurling my phone against the wall and running sobbing to the bathroom at work, when the Occupational Health agent on the other end of the line helpfully told me: “your condition is ‘chronic’, that means you’ll have it forever”.

So the next few years passed, with me living a half-life. Working when I could, often housebound and even bedbound when I had a relapse – which I did, frequently. I tried ‘pushing through’, thinking I was just being lazy, but I became less and less able to do the things I had always done – working thirteen-hour days, boxing, Ashtanga yoga, being in a choir, going to the gym, going for walks, going out with my friends until the early hours. It was like my life was eroding away bit by bit, until I was having to go to bed as soon as I got home from work and sleep all weekend, if I had any chance of getting into work the next day (which I often didn’t). I felt like I had tried everything, googling symptoms obsessively when I had the energy, and buying into anything that seemed like a magic bullet ‘cure’ for ME. None of these things worked.

But now, here I am six years later, fully recovered. 

I’m back at the gym doing full-on cardio and weights, back doing three yoga classes a week, and able to go out with my friends again. I’m also doing some new stuff – frequently swimming a mile at the local pool, doing a weekly art class, and - best of all – I’m back to my beloved rock concerts! I can’t tell you just how joyful I feel – finally, I’m off the sidelines and back in the game – participating in life fully and squeezing the juice out of it at every opportunity!

So how did I get back to full health?

woman standing with arms outstretched before a blue sky filled with colourful balloons - ME CFS Fibromyalgia Recovery

The breakthrough came for me when I discovered an ME recovery programme called The Chrysalis Effect. Created by Elaine Wilkins, she had suffered with the illness herself for several years and was able to systematically work out all the different areas of her life that she needed to address in order to get herself better. She put together this programme to help other people suffering with ME / CFS and Fibromyalgia regain their health.

Bit by bit, with the support of this programme, I discovered all the things I needed to do to regain my health, and (joy of joys!) started to feel the gradual increases in energy and in mental alertness – I just started to feel like myself again, like I had my spark back, and I can’t tell you how wonderful that was! I only wish I had discovered it sooner, and saved myself years of illness.

When I was about 90% recovered, I started to feel that something wasn’t right, a small grumbling of unease in the back of my mind, and I couldn’t quite work out what it was. And then I finally figured it out. It was my job. In order to live the life full of energy and fulfilment that I truly wanted, I needed to be doing a job that I was really passionate about – and honestly, delivering IT projects was just not it. I longed to do something that actually made a difference to people’s lives, and that would allow me to share everything I'd learnt was vital to vibrant wellbeing and living a truly fulfilled life.

I realized then that I wanted to help people just like me, who had found themselves in the clutches of this illness, to help them get their lives back too. So I quit my corporate job, and retrained and qualified as an ME / CFS and Fibromyalgia support practitioner with The Chrysalis Effect. I also qualified as a Life Coach and Wellbeing coach, as I found that many of the things that can lead us into chronic health conditions are the same things that prevent us from living a fulfilling and healthy life. What all of this means, is that today I work with ME / CFS and Fibromyalgia sufferers to find their own unique pathway to getting their health back, and I also work with people who have a goal to achieve or a change that they want to make, to help them find the path to living their best and most juicy life.