Severe M.E Awareness Week: My Story

My name is Phil, and I’m 42. Four years ago, I would have described myself as quite an active person who was rarely ill. I liked the outdoors, camping and hiking – my wife and I would regularly walk 8-9-mile walks over the moors and mountains in North East Wales, from my parents village near Wrexham, to Llangollen. I also frequently ran 10km, taking part in organised events across Sussex, Surrey and Kent, near where I live. I had a job that took me out in the field every week, and two energetic young sons to keep up with. 

But in 2018 everything changed. I caught a flu virus. Although I didn’t go to hospital, I was bed-ridden for 12 days and it was the worst I’ve ever felt. This happened shortly after moving home, with all the stress involved with that, at a time when my career had taken off and I was in a very demanding, public-facing role at work. Although I seemed to recover from the flu and returned to work, my mental and physical health began to unravel. By mid-2019 I was signed off work for five months. 

I was formally diagnosed with ME/CFS in May 2021, on top of a Fibromyalgia diagnosis in November 2019. For the past two years, my incredibly supportive employer has given me the space to try and phase back to work. But the reality is that I struggle to do more than two days a week, leaving me with little energy or ability to do anything else, and so Ill Health Retirement now looks likely. 

This illness has changed my life. From being an active, fit and healthy person, I now rarely manage to leave my home. I’m very often stuck in bed. On better days, I might manage to help a little around the house and very occasionally maybe even walk a gentle mile with the dog. Life is so different.  

ME/CFS is a devastating and debilitating illness. It has robbed me of life as it once was and severely affects the lives of my family too, as my wife often now has to look after me, alongside a demanding job and two growing boys.  

But I won’t give up. This isn’t the life I planned for. I’ll build a different life. One that is still meaningful and fulfilling, but in different ways.