Alexandra Barton is a life coach, counsellor, nutritional therapist (& ex-nurse) who specialises in helping adults & children with ME. When she was ill with ME Alexandra was depressed by the lack of recovery stories available to her. As a result, when she got better she found 50 men, women & children who had recovered and compiled their stories into a book called “Recovery from CFS: 50 Personal Stories” (CFS - chronic fatigue syndrome), including the stories of three doctors who've recovered from ME.
Q: What’s the best thing about living in the South-West?
I came to Bristol from London in 1982 and stayed because it is a wonderful place to live. Bristol has everything you could possibly want in terms of city life but it is also only a short drive from the countryside.
What’s your biggest achievement?
After having my children, getting better from ME. For five years I was housebound and unable to walk very far. I used a disabled scooter to go shopping in the Mall and even once went to Disney Land in Paris with a disabled scooter in the boot of the bus! I now lead a normal life and can go on active family holidays sailing and canoeing.
What’s been your biggest mistake?
Believing the fashionable dietary guidelines of the last 40 years which says that a low fat, high carbohydrate diet is good for you. It wasn’t good for me.
What was the last cultural event you enjoyed?
We went to see our friend and neighbour Phillip Manikum acting in a play at the Old Vic. The whole street turned out to watch him. That’s what I mean about the friendliness of Bristol.
What inspires you?
What inspires me at the moment is spreading the message to everyone with ME that recovery is possible. Many people with ME are very depressed, as I was, because they are told that ME is incurable. I think it is only thought to be ‘incurable’ because the medical profession as yet have no ‘cure’ for it – it doesn’t mean that you can’t get better! When you are ill having no hope for recovery is devastating and it is also unrealistic because people do recover.
Why do you think you got better?
I was determined to be a normal mother for my children before they had grown up and left home and that made me totally focused on getting better. I made myself believe that I could live a normal life again and I visualised it and worked towards it. I picked myself up again every time I went down. I refused to give up. Sometimes I was so focused on working towards my future recovery that I missed the fact that relaxing and enjoying what you have in the present can also be helpful to recovery. However, my goal of living a normal life again was the only way that I could keep going and that goal eventually became a reality.
What did you do to get better?
I tried anything which I thought would be helpful to my recovery. I went to alternative therapists and private doctors. I studied on the internet and collected books on nutrition, mind/body medicine, psychology, personal development, health and wellbeing and so on. I searched for the answer for me. I knew that I needed to balance my blood sugar levels and eventually realised that the diet I was eating (the low fat, high carbohydrate diet we are all told is healthy) was contributing to my problems. My recovery began from the day I reversed that diet. I cut out all manmade carbohydrates, eating only natural carbohydrates in the form of fruit and vegetables and increased the proteins and natural fats in my diet. I went from five years of being housebound to canoeing on an active family holiday within 18 months.
What would you advise others wanting to get well?
That something has to change in their life for them to get well. Something about their life before they got ill didn’t support their good health. They need to be their own private detective and find out what was going wrong and do their best to correct it. You have to be prepared to pay the price for recovery. For example, you may have to give up eating the food you like or doing the great job which is too physically demanding or deal with outstanding emotional issues. I also think that you should do whatever you can to increase your happiness. Think about what you want most and aim towards it. I would say the most important thing is attitude of mind. Always believe that recovery is possible. If you give up you stop taking steps towards your recovery and are much less likely to recover.
What did you do to get better?
From the point of view of ME I particularly like the book “Being Happy” by Andrew Matthews. It is an uplifting book to dip into and helps you look at things a little differently. Also “Be Your Own Life Coach” by Fiona Harrold shows you how to take control of your life and start working towards what you want most.
What do you think causes ME?
As yet nobody knows what causes ME but underlying every illness is the inability of the immune system to defend you from disease. Recovery from any illness involves helping the immune system – that means removing emotional and physical stress, getting good nourishment from a good diet, peace of mind, water, sunshine and rest.
What has life taught you?
Not to underestimate the effect that our diet has on our physical and mental health and happiness. Also that our life now is the sum total of every decision we have ever made in our life so if we are not where we want to be today we have to make different decisions – decisions which lead us in the direction we want to go – even if that only means choosing a salad instead of a chocolate bar for lunch!
“Recovery from CFS – 50 Personal Stories” is available through Alexandra’s website (www.alexbarton.co.uk) and from Amazon (www.amazon.co.uk). 20% of the book proceeds are going to ME Research.
alexbarton.co.uk cfsrecoverystories.com Tel: 0117 924 1610
interviewed by Fiona McClymont • photo by Jo Halladey
first published issue 53 - summer 08
Disclaimer – details were correct at time of going to press, but may now have changed. Please make your own checks.
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