Alex’s Recovery Story
“A change of diet
got me from wheelchair to well”
I am a 58 year old woman who suffered 12 years of M.E. I was so ill I used a walking stick, wheelchair or a disabled scooter to get out of the house. For the last 12 years I have been well. I have skied, canoed, worked full-time and lived a normal life. This is my story.
I was only 25 when I first went down with M.E in 1985. It followed a particularly bad bout of flu, from which I didn’t recover for another 5 years. At the time I was newly married. An active skier and rock climber. I worked full-time as a BBC radio production assistant, whilst moonlighting at weekends as a nurse (my main qualification) to help support my husband who was a student. I was diagnosed with M.E. by a specialist in Bristol at the time, but it was nicknamed ‘Yuppie Flu’ in those days and my GP thought I was just depressed. And so did everyone else.
I spent 5 years struggling to maintain a job. Often off for months at a time, then back working part-time, then off again. When I wasn’t working I was crashed out in bed, aching all over, asleep by 8pm and struggling to get up in the morning. No more climbing. No more skiing. No socialising with friends. Just going to work and going to bed. Getting through every day was a major struggle. Yes, I definitely got depressed – who wouldn’t?
Eventually I recovered. Looking back now I put it down to seeing a private doctor. He told me to eat a protein meal or snack regularly. Simple advice, but when my baby was born in November of 1988 I couldn’t get out of bed and needed a nanny. By June 1989 I have photographs of myself running around Bristol Zoo with my six month old on my shoulders. For the next 7 years I was happy, well and living a full life again.
At the time I didn’t know why I was getting better. As a nurse I wasn’t taught about nutrition and had no notion that diet had anything to do with my recovery. So, back to work, busy, happy.
Then in March 1998 I woke up one morning and couldn’t get out of bed. There were clues it was coming. For several weeks leading up to it I had felt tired getting up in the morning. And I had had a very stressful year. A new baby, a husband working abroad and major works on the house which meant we had to move to a small, damp flat nearby. I got depressed. I was put on Prozac. Prozac gave me six months of amazing energy and positivity. I hardly slept. I hardly ate. I lost weight. The house was painted in the evenings, the Christmas decorations were all hand-made, I made Christmas dinner with a baby in my back-pack – I truly was super-mum. But after six months of this, I had three weeks of feeling tired in the mornings, then one day, I literally couldn’t get out of bed. And that was it, another 7 long, depressing, exhausting, miserable years.
So here I was again. Now with 2 children and so exhausted that just the effort of trying to get out of bed made me sob with misery and frustration. Only someone with M.E. could understand the kind of exhaustion I am talking about, draining my mind and my body. I have never felt anything like it since. I couldn’t look after my children or my home. Not only was my body not working, but my brain was gone too. I couldn’t think. I would get half-way through a sentence and forget what I was saying. I drove the family mad by losing concentration half way through them trying to tell me something. I couldn’t remember anything from one minute to the next. The children’s conversations were too fast. There was a thick, black fog in my brain. I was in pain everywhere, aching all over. Just walking from one end of the kitchen to the other felt like a feat worse than climbing Mount Everest with an elephant on my back, whilst suffering from the flu. I was unable to look after myself, let alone my children. I was diagnosed again with M.E.
So we again employed a live-in au pair to help look after the children and home. (I realise that I was very lucky to be able to do this. I know most people can’t). If I managed to be up by lunch-time and dressed by the time my husband got home from work in the evening, it was a miracle.
Some of my M.E. was undoubtedly impacted by being prescribed amitriptyline for the awful muscle aches and pains I felt all over. It was only a small dose of 10 mgs, and the pain may have got less, but I put on three stone in weight, which didn’t help; and more importantly, what I didn’t realise until I came off it four years later, was how much more drowsy, and how much more of a zombie, the amitriptyline had made me.
So the years continued. I was always focused on recovery. I couldn’t accept M.E. was incurable as I had already recovered once. I tried every therapy available – and spent a fortune. Everything gave me hope when I needed it, but nothing worked for me in the long term.
Eventually I found the key to my recovery by accident. I was so desperate to lose weight that although I’d been told not to diet until I got better, I decided to go on the Atkin’s diet. To my surprise, within a week I started waking up more easily in the morning and feeling happier. Within weeks I was feeling better. By six months we went on our first family holiday in 7 years and I went canoeing. Bear in mind this was not a miraculous recovery. My stamina grew slowly. It took me six months the first time I got better. This time I gradually did more and more and was back to normal by two years.
And I have remained well ever since. Because now I understand that my diet wasn’t good enough to sustain me through stressful times; and that the right diet wasn’t just essential to my recovery, but is essential to keeping me well now.
My interest in nutrition was sparked from the very first few weeks of feeling so much better on my change of diet. I trained in nutrition, it remains my passion, and I have since helped hundreds of people with chronic fatigue and M.E. to improve their own health.
What you have to remember, at the very least, is that your body is built out of the food that you eat.That is why your diet is so important. You have to give your body the nutrients it needs to heal itself. And while everyone knows that stress makes it hard to recover, few realise that their major form of stress may be their daily diet, upsetting their hormones, depleting their brain chemistry and making it harder to recover.
Recent research into M.E. is coming up with metabolic problems, difficulties getting calcium into cells, malfunctioning mitochondria and so on, all of which provide evidence that diet is something that anyone with M.E. needs to take very seriously.
Author of ‘Recovery from CFS – 50 Personal Stories’