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I had to change the balance of my diet
I first became ill in 1985 when I was twenty-six years old. I was working as a radio
production assistant during the week and moonlighting as a staff nurse at weekends. Like so many people I caught flu and ‘never recovered’. I was diagnosed with ME within a few months but went on to be ill for the next four years. I staggered into work when I could and was off work sick, often for months at a time, when I couldn’t.
I was a nurse, yet I had never heard of an illness like ME. I had a lot of upsetting
visits with disbelieving doctors who thought I was just depressed because, despite my diagnosis, they had never heard of ME either. One day I heard about a doctor who believed that ME was a physical condition and I went to see him privately. He organised blood tests which showed that I was deficient in various vitamins and minerals, particularly magnesium, and told me that I suffered from ‘rocky blood sugar levels’. He advised me to ‘eat protein and carbohydrates together regularly’ and take vitamin and mineral supplements. Having been more or less bed-bound at the stage I saw him and needing a wheelchair to go out, I have photographs of me six months later running around the zoo with my one-year-old son on my shoulders.
I felt fit, healthy and happy then for about seven years. I worked part-time at the BBC
whilst my son was at school. I did aerobics and dance classes, went skiing on holiday and had no symptoms of ME at all during this time.
Three or four years in, however, not understanding how important my diet was, I
stopped being careful about eating regular protein and stopped taking supplements. I returned to what is widely advised as a 'healthy' low fat diet. Although I was very happy with my life, I noticed a return of the emotional dips which I had had since I was a child, when I would feel sad for 'no reason'. I found I was either feeling low, or I was eating regular sugar and caffeine to 'give me a lift'. I never put the two together. I always thought I was feeling down because of something else going on in my life. Later I began to wake up in the night feeling sad, angry or just wakeful, only able to feel fine again and return to sleep after a large bowl of cereal! I had no idea I was self-medicating low blood sugar levels.
In the few years before I got ill the second time, I increased my work hours,
remarried, moved house twice and had another baby. Immediately afterwards we moved into a cramped one-room basement flat for several months whilst our new house was turned into a building site and treated with dry rot chemicals. When we returned to a house full of builders I went to the doctor saying that I felt anxious and down. He diagnosed me with post-natal depression and gave me prozac. Being on prozac was like being on speed. For six months I barely ate, lived on coffee and couldn’t sleep for more than five or six hours a night, but was consistently cheerful! I turned into what I thought was ‘super-mum’. I went into a frenzy of cleaning and cooking and redecorating the newly repaired house. I went to dance classes two evenings a week and socialised and looked after my seven year old son and baby, often on my own as my husband was working abroad for several weeks at a time.
Six months after starting prozac I crashed. I woke up one day unable to get out of bed
at all. The ME was back – wham – with little warning other than being a bit tired getting up in the mornings for a few months before. At first we kept our hopes up – it would be a three week relapse; a three month relapse; six months or even a year - but it ended up being another seven long years. And this time was more devastating than the last time, because I was worse than I was before and I had two children to look after.
I became an invalid. I was house-bound and often bed-bound. I couldn't look after
my children or the house, let alone myself, so we had to get a live-in, full-time au-pair for five years, and my husband operated as a single father evenings and weekends. I remember feeling devastated when my toddler thought that a mummy duck with her ducklings in a picture book was a daddy duck. I couldn’t make a shopping list, understand what people were saying to me or remember how to finish a sentence. I slept nineteen out of twenty-four hours for several years. I slept right through my son’s ninth birthday and prised my eyes open only long enough to watch him blow the candles out. Just walking the length of the kitchen felt like climbing Mount Everest with a ten ton elephant on my back. Needless to say, I got very depressed. Eventually I used a wheelchair or disabled scooter for the rare family outing.
My doctor took a blood test showing flattened red blood cells which he said looked
like malnutrition “but can't possibly be because you're in England and not Africa”. He also took a test showing high prolactin levels, because I was still producing milk four years after stopping feeding my baby. All other tests came back normal. He gave me low-dose amitriptyline for the night-time insomnia and continuous, all-over muscle pain and I took it for four years. In the first year of taking it I put on three stone, so I spent the next five years in leggings and T-shirts because I was too ill to go shopping – at least they were ideal for in bed and out. When I came off the amitriptyline I realised it had turned me into even more of a zombie than I already was and had also given me some of the strange side-effects that had worried me so much over the years.
The NHS were unable to help further so like many people I tried lots of different
alternative therapies – some of which were very helpful. I tried osteopathy, Chinese medicine, homeopathy, reiki, spiritual healing, reflexology, counselling, various diets, hypnotherapy, yoga – you name it, I tried it – right down to colonic irrigation.
Later I went to private doctors and had tests done showing gut dysbiosis, reactive
hypoglycaemia, low adrenal (cortisol) output, low thyroid levels, raised oestrogen, vitamin and mineral deficiencies, blood abnormalities like the misshapen red blood cells and clotting and so on. I was given adrenal and thyroid hormones for a year or so according to Dr Jacob Teitelbaum’s protocol and I felt better on them.
As my brain began to come back I started researching. ME is, after all, only a
collection of symptoms and I was determined to find out what was causing them, because something certainly was. I was desperate to get well for my children. I was saddened by the effect my illness was having on them and I was determined that I would recover in time to be a good mum to them. Getting well became my full-time job and every day I tried to do everything right – eat the right food, take the right supplements, do the right exercise, rest, meditate, walk so many steps … and so on. I was constantly starting new protocols and regimes. As each one failed, I tried another. But everything I tried helped me. Everything took me another step forward - if only because every book I read, every new supplement, exercise or routine I tried, gave me the hope I needed to keep going.
I spent much of my time studying on the Internet and reading the many books I
bought from Amazon on health, nutrition, spirituality, mind/body medicine, psychology and personal development. I was particularly interested in studying the commonalities between people who recovered from 'incurable' illnesses. Although as a nurse I was sceptical of the idea that diet had much to do with health, it was diet that came up time and time again. Diet and/or peace of mind appeared to be the two keys to recovery. So I decided to address both.
I learned about mind/body medicine and the power of the mind and I put as much as
possible into practice, including meditation, relaxation, self-hypnosis and positive thinking. Autogenics I found particularly helpful. I learned that my mind and body were one and the same, and that the health of each were dependent upon the other. I learned that a healthy body meant a naturally positive mind, and vice versa. I learned that stressful thoughts
produce stressful hormones which are not conducive to healing, so I learned how to change what I was thinking about. I particularly liked a phrase of Anthony Robbin’s “if you think what you have always thought, you will get what you have always got”, demonstrating that I had to start changing the way I thought in order to get out of the mess I was in. Even if it only meant I had to stop thinking that I was helpless, and start thinking of a way out!
I became very interested in nutrition. I came across articles and books by doctors and
nutritional scientists who believe that our modern, recommended 'low fat, high carbohydrate diet' has a tendency to cause unstable blood sugar levels and hormonal imbalance, and has contributed to the huge increase in chronic degenerative diseases like cancer, heart disease, diabetes and obesity and, possibly even, the recent 'epidemic' of CFS/ME – and it all made sense to me. I had tried different diets, including of course the anti-candida diet; I had taken lots of supplements and cut out sugar, wheat and dairy products, but I had continued to eat a low fat diet based around carbohydrates, eating rice cakes by the ton load. Regular carbohydrates, I had found, were the only thing that made me feel even half
-human, but now I realised I didn't need all those carbohydrates to keep my blood sugar levels stable, and that it was, in fact, all those carbohydrates which were causing
the problem. I had far too many
carbohydrates in my diet and not enough fat or protein to balance the resultant rocky blood sugar levels. I finally understood that it was the balance
of my diet which was wrong.
I learned that when you eat something sweet or refined it causes a rapid increase in
blood sugar levels and then a massive drop below normal. The brain can't function without glucose for more than a few minutes so it sends very powerful biochemical messages urging you to eat something sweet quickly. You feel this as a 'need' to eat or even a craving. It is very difficult to ignore these survival messages from the brain, because if you do, you suffer the effects of low blood sugar, a result of a brain deprived of glucose. Many people suffer low blood sugar levels all their lives without realising it, self-medicating with a cup of coffee and a biscuit, afternoon tea, a bed-time snack to 'give them a lift'. Many others like me, try to avoid these foods for their health or to avoid weight gain and are made fully aware of the powerful effect of low blood sugar levels. Low blood sugar levels can make us feel depressed, tired, irritable, anxious, foggy brained, forgetful, light-headed, confused, weak, craving sweet foods, hungry and wakeful at night. Chronically low blood sugar levels can make us feel like that all the time – and we unconsciously try to improve the situation by continually eating sugar, caffeine and anything else to give us a 'lift'.
My whole life suddenly made sense. My struggles with sugar, caffeine, nicotine at
one time and even shift-work when nursing. My emotional dips, solved
by any of the above stimulants. All these things were a cause, and a result, of rocky blood sugar levels. What I had thought was a 'normal' diet of cereal for breakfast, bread for lunch and pasta for tea, was actually a diet based around refined carbohydrates which was causing me blood sugar swings throughout the day and triggering a desire to eat sweet foods often. What had felt like an 'addiction' to sweet foods was simply a result of low blood sugar levels.
I learned that every time our blood sugar level drops our adrenal glands are triggered
to pour out adrenaline in an attempt to balance them. This is the well-known 'fight or flight' response. Our adrenals were designed to cope with the occasional stressful situation of “oops, panic, there’s a mammoth in our path”. They were not designed to be continually triggered throughout the day, day after day and year after year, to raise chronically low blood sugar levels, caused by a diet high in sugar, refined carbohydrates and stimulants like caffeine. If the adrenals are over-worked then it seems that our stress hormones can become depleted and our ability to cope with stress, whether emotional or physical, is reduced. A low fat diet aggravates the situation because the adrenals need natural fats in order to make more stress hormones and if you aren't eating enough you can't make more.
I learned that rocky blood sugar levels and fatigued adrenal glands can cause
hormonal havoc by unbalancing hormones like insulin, adrenaline, cortisol, thyroxine, growth hormone, oestrogen and progesterone and by depleting brain chemicals like serotonin (happiness) and dopamine (motivation). They can also depress the immune system, over-stimulate the central nervous system, disrupt digestion, keep the cardiac system on red alert and so on.
Having learned the connection between carbohydrates, blood sugar balance and the
adrenal glands, I realised that the fashionable low fat, high carbohydrate diet which we have been told is 'healthy' over the last forty years and which I had been eating my entire life, might actually be causing
my problems rather than alleviating them. So, five years after becoming ill, I decided to try a low carbohydrate diet. I was convinced that I would feel terrible without my normal intake of carbohydrates, and indeed I did, but only for the first five days.
The breakthrough came on day six when I woke up with a clear head in time to see
the children off to school for the first time in five years! Usually it was a struggle to wake up before midday. And my brain fog had lifted! I even felt mildly cheerful! From then on I didn’t look back. I cut out man-made
carbohydrates, binned the rice cakes and continued eating essentially as our distant ancestors did - meat, fish, eggs, dairy, nuts, seeds, fruit and vegetables - and gradually my strength came back. At six months I no longer needed our live-in au-pair and at eighteen months I went canoeing in France on an active family camping holiday.
By changing to a low carbohydrate diet I had reduced the level of glucose in my blood
and my blood sugar levels had stabilised. This meant that my adrenals were no longer being triggered throughout the day so they were able to recuperate, recover and replenish their supply of hormones. Adrenal stress tests showed my adrenal hormone levels gradually returning to within normal range, and as this happened, all my symptoms started disappearing, indicating that perhaps other systems were also returning to normal.
As well as reducing carbohydrates I increased protein and natural fats in my diet. I
learned that every cell in our body is made out of protein and fat, from our brain chemicals to our organs to our muscles, and that we need enough protein and fat in order to be able to rebuild cells and produce hormones and repair daily damage – especially
when we are sick. Nowadays we often don’t eat enough protein and natural fats because we are filling up on too many man-made carbohydrates, which provide mainly glucose for energy. This is obviously fine if you are an athlete and can use up lots of them, but if you are an office worker you need less and if you are crashed out with ME, like I was, then you really don’t need many at all. Bearing in mind that the only form of carbohydrates our distant ancestors ate were fruit and vegetables and that farming cereal grains began only 10,000 years ago, a ‘blink of an eye’ in genetic terms, then you can see how some of us may not yet have adapted very well to toast for breakfast, sandwiches for lunch and pasta for tea. Especially considering the huge increase in refined
grains in our diet over the last fifty years.
I had dismissed gluten intolerance as being a contributory factor of my illness because
as a nurse I had learned that coeliac disease presented with bowel problems, which I hadn't had; and I had already cut out wheat, a major source of gluten, within a few years of getting ill. However, after I recovered from ME I learned that gluten intolerance/coeliac disease can present without bowel problems and can be an underlying cause of fatigue, depression and nutrient deficiencies, as well as blood sugar and hormonal problems. So I got myself tested. My blood tests indicated severe gluten intolerance and a high likelihood of coeliac disease. In order to get a definite diagnosis here in the UK you have to go back on gluten for two months and undergo an endoscopy. Having eaten very little gluten for four years I was pleased to have the opportunity of eating bread and pasta again to my hearts delight, however, my doctor and I abandoned that route after one month back on gluten left me depressed,
unable to wake up in the morning, ten pounds over-weight and with horrible stomach and bowel problems. I didn't need to suffer another month for an endoscopy to tell me that gluten was a problem for me after all. One doctor I saw suggested that my gluten intolerance may have been the entire underlying cause of my ME. He said that untreated gluten intolerance can cause blood sugar problems and eventual low adrenal and thyroid function, which seemed to fit in with my tests and symptoms.
Six months after my change in diet my stool tests returned showing that I no longer
had the klebsiella and candida infections that I had been battling for five years and I was no longer mal-absorbing proteins and fats. My red blood cells looked fine and my adrenal hormone levels returned to within normal range within the year, as did my vitamin B12 and magnesium levels. My blood pressure no longer dropped on standing and my skin rash disappeared. I did however still have reactive hypoglycaemia, which obviously I suffered from even as a child, and which is so common today. This means that if I eat sugar or refined carbohydrates, my blood sugar levels swing hugely upwards and then crash very low, leaving me feeling emotional, irritable and tired – and craving more sugar or caffeine to raise them again quickly.
As I was recovering, I began to feel ‘normal’ doing nothing. At this stage I began to
work on building up my strength. I started walking five minutes to the end of the road and kept this going for a week. I then increased it to ten minutes for another week, and so on. It was a long, slow process, but after about six months I was walking for half-an-hour twice a day and after that I didn’t even need to think about it.
As I got physically better I initially became more anxious. Probably because the big
wide world was coming back for me to deal with and when you’ve been cocooned in your home for so many years it all seems a bit much. I also struggled with depression. I needed to ‘move on’, but I was stuck grieving the loss of so many years of a normal family life with the children. I was also learning to manage my blood sugar levels. Also, according to the Coeliac Association, it can take a year of strict
adherence to a gluten free diet for serotonin (happiness) and dopamine (motivation) metabolite concentrations in the brain to increase again to normal levels. So all in all, my physical health returned first and my brain dragged along behind! There was also a lot of readjusting to do for my husband and me. We had to relearn how to deal with each other as partners rather than invalid and carer. It wasn’t easy. After so many years of being strong and holding everything together, he was exhausted too.
So what do I think was wrong with me? Of course I don't know for sure, but given
that I recovered both times by balancing my blood sugar levels, I suspect
that my poor health was the end-result of my susceptibility to the high amount of sugar and gluten in our highly refined western diet. I suspect
that I had, as a result, ‘less-than-buoyant’ adrenal glands, which were only able to cope as long as everything went along relatively easily in my life, and when I had one stress too many, as I did twice, then they could not cope and down I went with ME.
And if gluten, rocky blood sugar levels and the hormonal consequences weren’t the
cause of my ME, then they must surely have played a part in making me susceptible to whatever does cause it, perhaps due to a consequently depleted immune system.
As our adrenal glands are triggered by both emotional and physical stress, I believe
that I could also have recovered if I had been able to reduce my emotional stress, which I certainly had my share of. However, I think that without changing my diet as well, my recovery would have been forever dependent on maintaining a stress-free life, because as long as my adrenals were being continually triggered by a less than optimal diet, they were never going to regain full strength. As it was, changing my diet meant that my adrenals became strong enough to cope with the emotional stresses that I had, as they were designed to do.
So how did I recover from ME? The answer for me was simple in the end. I changed
of the diet I had eaten for most of my life. I changed from a low fat, high carbohydrate diet which we have all been told since the 1970s is good for our health – to a lower carbohydrate diet with increased protein and natural fats which balanced my blood sugar levels, restored my hormonal balance, strengthened my immune system and provided the raw materials to rebuild and repair my body and brain.
I hope that if I remain gluten-free and maintain balanced blood sugar levels (as our
ancestors naturally did) that my adrenal glands will protect me well enough from the effects of stress for the rest of my life and allow the rest of my body to work as it should. I believe that by maintaining my changed diet and
dealing promptly with my emotional stresses, that I have the best chance of a sustained recovery and good health in the future.
Now, as long as I am careful to keep man-made
carbohydrate levels low, then I can
cope cheerfully with anything that life throws at me. But, if I succumb to sugary temptation and keep it up for a few days, then I will experience fluctuating blood sugar levels with depression as a result; and I will find it harder to wake up in the morning. It takes five days off sugary foods for me to feel good again. I owe it to my family to be vigilant about my diet so that it never again leads to what I suspect was the end-result – ME.
It took me a long time to unravel what was wrong with me, and then to correct it. I
hope very much that it doesn’t take you as long to find out what is causing your own illness, and I wish you all the very best for a return to your own good health.
Most useful aid to recovery -
a strong reason to get well (my children). A fierce
determination to get back to full health whatever the cost and do whatever it took. A refusal
to believe anyone who said it wasn't possible.
“Life Without Bread – How a Low Carbohydrate Diet Can Save Your Life” by Dr Wolfgang
“Nourishing Traditions – The Cookbook that Challenges Politically Correct Nutrition and the
Diet Dictocrats” by Sally Fallon & Mary G Enig, Ph.D
“Protein Power” by Dr Eades
“Tired of Being Tired – Do you Have Adrenal Burnout?” by Dr Jesse Lynn Hanley
“From Fatigued to Fantastic” by Dr Jacob Teitelbaum
“Be Your Own Life Coach” by Fiona Harrold
“Molecules of Emotion – Why You Feel The Way You Feel” by Candace B Pert, Ph.D
“Being Happy” by Andrew Matthews
“The Magic of Thinking Big” by David Schwartz
www.dymyhill.co.uk Alexandra's advice –
Removing stress can help the body to heal so it can be helpful to make
a simple list of all your physical and your emotional stresses and then start dealing with them,
one at a time, starting with the easiest.
“Never, never, never, never give up”. Winston Churchill
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