(Page updated July 2018)
These are very complex, inter-related subjects, and I find it difficult to split them into convenient chapters or sections, because in order to get the best use of the information, you often need to read several sections in a row, but don't forget that if your computer has a keyboard, you can use the usual CTRL F to find a word.
I can't seem to get away from them, in supermarkets, hospitals, churches, surgeries, police stations, choirs, bands, or in the street… human beings. And we are flawed, imperfect, no question about it. In recent years, Beth and I were fortunate to have a very kind, caring man as our GP, sadly now dead. He was human too, didn't always get everything right, but what set him apart was that he cared and he made the effort.
In recent times, we have had some wonderful help from specialists and consultants, but over the years, our experience of general practice has not been a happy one, and we have often come away feeling that nothing was achieved. A recent survey revealed the appalling failure of GPs to diagnose cancer early enough, or even consider that symptoms MIGHT be cancer. Frequently, a simple scan would solve a problem in minutes, but people are waiting months for scans. If you have a few thousand pounds to spare, you can buy an ultrasound scanner that works off your laptop. The NHS keeps bleating on about the problem of obesity, but they don’t do anything to fix it. They are now saying that they haven’t got enough GPs. A friend kept telling her doctor that something was flopping around inside her stomach when she turned over in bed, doctors said she was talking rubbish, but eventually they did a scan and she had a benign growth the size of an orange inside her stomach. Another friend was suffering severe abdominal pain and intermittent bloating, but she had to be quite inventive with ways to see several doctors in an attempt to get something done. Any fool could google the symptoms and realise that there was the possibility of a perforated bowel, or even peritonitis, with the risk of death, but…
One doctor said it was just indigestion.
Another said it was just body fat, although it was coming and going several times a day.
Another said it was constipation, although she was not constipated.
Another said she was pregnant, although she knew she was not.
Another doctor treated her for a Urinary Tract Infection, but…
GOOGLE WAS RIGHT, IT WAS A PERFORATED BOWEL, and if the hole had been bigger, she could have died while they were dithering, but we took her to A&E and they sorted it with the urgency it deserved. The staff at A&E sometimes ask why people don’t go to their GP, the answer is that
OUR AMAZING A&E DEPARTMENTS ALWAYS GET THE JOB DONE!
Did you know that a third of all breast cancer patients are over 70?
It’s a good job mammograms are done regularly then?
Except that they STOP when you are seventy!
So they stop testing at the age when you are most at risk.
In Norfolk, I heard a number of bad reports about our local hospital, people suffering major life-changing errors, and 2 people who should not have died. My own experience with them was that when I nearly died from cellulitis, in the week when the twin towers fell, the doctors and nurses who saved my life were wonderful, but I might not have been in hospital at all if the GP I had at the time had made an effort to do his job, and that has been my experience with the “minor” ailments that have blighted my life over the past half-century, crippling dry throats, the painful knee that sometimes drops me on the floor, the skin that constantly itches, and often fails to heal. Nobody made any effort so it is no surprise that I have had to go through life spending inordinate amounts of time and energy experimenting to try to solve my health problems myself in an amateur way. Sometimes, I come up with things that help me enormously, and although I appreciate the fact that we are all individuals, with our own peculiarities, I hope that these ideas may help some other people too.
Listen to other people’s advice, and give it consideration,
but do remember that, even if you are not medically qualified,
YOU ARE THE WORLD’S LEADING EXPERT ON THE SUBJECT OF LIVING IN YOUR BODY!
“Patients know their own bodies, and they are usually right” – Dr Shaik
I am not a huge fan of fringe medicines, and things like aromatherapy and hypnotherapy seems to have severe limitations, but there are references below to genuine help I received from an acupuncturist, a chiropractor, and Cold Laser treatment. I tried reflexology briefly, and found it to be a very impressive diagnostic tool, but it did not seem to cure anything.
THE AGE OF MISINFORMATION
Many people turn to the internet for clues to their health problems, or for dietary advice. If you look carefully, you can usually find some pages that will support what you want to do, and other pages that tell you it is unwise, or even dangerous, so you can find conflicting advice about all kinds of foods, drinks, and treatments, including…
Cooked fruit and veg,
High fat diet,
Ketones for memory problems,
Low fat diet,
Raw fruit and veg,
THERE IS NO WAY TO KNOW WHICH OF THOSE PAGES IS SAFE OR RELIABLE.
This page demonstrates the alarming number of incidents found just in our small circle of friends and relatives, and I can’t escape the feeling that if you are dying, or have a life-threatening condition, the NHS is wonderful, but if you have some illness that makes your life very difficult, they often aren’t much help at all. It seems that doctors and nurses are trying hard to do their very best to help people, but fighting against the system, the shortage of staff, and lack of resources, but many of these intelligent people are making careless, thoughtless mistakes with no sign of the most basic common sense, presumably because of fatigue from working ridiculous hours. Not so long ago, a friend had been unable to eat for ten days, and he was given laxative because he wasn’t producing any output. What output did they expect from someone who hadn’t eaten anything? Not only that, they gave him a substance made from milk and sugar, two things that had been expressly forbidden from his diet because of his food intolerances. Are we surprised that, already ill, he spent hours vomiting? Recently, a nurse had to be helped by visitors, because she was left alone with nobody to help her turn a patient in bed. All too often, people have food and drink delivered to the side of their bed, but nobody considers whether they are well enough to feed themselves, then the food is taken away because they didn't eat it. In some cases, even medication is left there, but some patients can’t take it without help. A friend was lying in hospital, with a catheter, and we had to point out to the staff that the urine was very dark, suggesting an infection. They hadn’t noticed. A patient who urgently needed an enema was still waiting 26 hours later. On the day a patient was being discharged after an operation, he was taken ill with something unrelated, and was treated in hospital for a further 5 days, but no record was kept of his treatment or medication, no proper discharge letter was issued, and no follow-up medication was provided, in fact there seems to be no record at all of that extra period of treatment, so the 3-week follow-up turned into 3 months of pain, waiting for the hospital to get its act together. Another “follow-up” appointment for an April operation was delayed until January the following year, anything could have happened.
So much could be achieved if just one person went from bed to bed,
asking people if they needed help with anything.
Old people seem to be written off, as if they don’t matter anymore, and no thought is given to what this person is usually like at home, or whether they lead a busy, active life. They are just written off.
“I hope I die before I get old.”
I am 71, and I know lots of people who are ten, twenty, thirty years older than me, we are not ready for the scrap heap yet. I found a lovely item in the Illustrated London News, 1863, about a man called Martin who was 112 years old. He was rushed to hospital, and everybody thought that was his lot, but he recovered to such an extent that he walked home! Doctors couldn’t agree whether a friend of mine was going home to die, or simply recovering from a period of starvation. Imagine if it was your parent, how can anyone be so insensitive as to ask you sign a form for “Do Not Resuscitate” when the patient is not dying. A man recovering from a broken femur was told to get out of bed and sit in the chair. Another, suffering from a broken hip and acute delirium was left sitting in a chair unattended, and also allowed to fall twice, adding further damage to the hip. Patients in wards are trying to rest and recuperate, but are constantly distressed and irritated by beeping noises from machines, with decibel levels nearly up to the 90db pain threshold, and the staff ignore them, or press a button that only stalls the beeping for a few minutes. It’s like being treated in McDonalds.
I asked a nurse what was the purpose of the beeping.
“It’s the air mattress, you can press the button and it stops beeping.”
“Yes, for ten minutes, but what is the purpose of the beeping?”
…So we arrived at a situation where visitors were repeatedly going to the bed of someone they didn’t know, and pressing the button, although nobody could explain why it beeped in the first place. A nurse told me "They are the bane of my life, they always seem to be beeping about something". Once the visitors went home, patients had to put up with it.
There used to be a poster in our doctor’s surgery which warned that when you reach 65, you are more likely to fall over. We found it ridiculous, the idea that suddenly, on your 65th birthday, you will start falling over, but we have been shocked at the number of pensioners we know who fall over sideways, or fall off a chair, and break their hip, or the femur near the hip. There are whole hospital wards devoted to this problem, and I have become quite worried, not about falling over, but about the life-limiting effects of a broken hip for an old person. I am trying to devise some acceptable way to hide padding around my hips, and I would advise all pensioners to give this some serious consideration. I have come to realise that falling over is my biggest fear.
COKE, WEIGHT, GLUCOSE & CAFFEINE
For most of my life I have suffered crippling dry throats which make it almost impossible to speak or sing, two things I often need to do. Because doctors couldn’t see it, or measure it, they did nothing, so for half a century, since I was not prepared to drink whisky all day, my only reliable relief was drinking Coca-Cola. Not the sugar-free or aspartame version, not water, Pepsi or any of the other colas or fizzy drinks, fruit drinks etc. although I have had nearly as good an effect from LIDL's cheap cola. Now, I have to pay sugar tax because the NHS doesn’t deal with my throat problem. By the eighties, I was aware that this was a quite separate function from thirst, I didn't need a whole can or glassful, just an occasionally mouthful. I tried living without Coke for 2 months, I didn't lose an ounce, I just suffered terribly with my throat. People go on about the amount of sugar in Coke, but years ago, a GP with a bottle on his desk said "What sugar? Coke contains glucose, which stimulates the production of mucus". The clue was there, but I didn't spot it straight away, and it was in 2015 that it suddenly became obvious that when I have a cold, and produce more mucus, my throat problems go away, so I asked my GP how I could get my body to produce more mucus. He implied that I was talking rubbish, and gave me some pills that did nothing, so I asked my acupuncturist, and with my guidance she sorted it out - half a century of discomfort gone in half an hour, although treatment needs to be topped up. Now that my throat is not a problem, the only down-side is that I am a bit clogged up with mucus first thing in the morning, but that is a small price to pay for relief from years of misery. Ironically, Coke is the best thing to clear that, but I gave up having it indoors for a while, so I only drank it when I was out. That reduced my glucose levels, and within 3 weeks, removed my theoretical risk of diabetes, but there was another complication that I didn't bargain for. I don't drink tea or coffee, and I have often said that “I take my caffeine cold", but stopping the Coke meant stopping the caffeine, and that slowed me down to an alarming extent, so I actually PUT ON WEIGHT, probably because of the lethargy. So-called "natural" stimulants may seem like an answer, but they seem to contain large amounts of sugar and fructose, as do "health drinks", yoghurts and fruit drinks. Probiotic yoghurts often lose their probiotic properties by the time you eat them. Probiotic capsules are better.
An American friend pointed out that doctors in the states prescribe the syrup from which Coke is made, for relief from certain throat ailments. Where can I buy it? If you use a drink to help your throat, you probably only need an occasional mouthful, so don’t drink a whole can or a glassful, I find that I drink less if I take it straight from a large bottle. If you are taking in too much fizzy drink, try this: make a rule that you first have to take so-many swallows of water, then you are allowed just one mouthful of fizz, so you still get the taste, and the feeling in your mouth. Now the panic about sugar has led to massive over-use of artificial sweeteners such as aspartame, with no though about their long-term effects. NHS advice about certain conditions indicates that a third of patients suffer symptoms when they use aspartame. Why is it allowed in drinks? I don’t mind having less sugar, but I object to using these dangerous ingredients.
I have always imagined that dryness and irritation in my throat, and problems with healing in the lining of my nose, are connected with similar symptoms on my skin, but a dermatologist told me this was rubbish! Just a coincidence then?
NOT TO BE SNIFFED AT
As a child, I was told that sniffing was bad manners, a disgusting habit, but to me, there are few things more disgusting than a snotty handkerchief, so I turned to nature for guidance, as I often do. Our bodies cannot function without swallowing saliva and mucus constantly through the day so, like it not, we are all swallowing snot all the time. The lining of your nose secretes this sticky liquid, which coats the area, and traps dust and other irritant particles, then acts like a natural conveyor belt, gradually dragging the particles down to the back of your throat. Sniffing mucus into your nose keeps your germs to yourself, instead of blowing them around the room, and your body deals with them.
I found it amusing that there is a fancy medical term for people who eat their own snot, in the way that one of my teachers frequently did in front of her pupils at junior school. It is also interesting that this is the only lasting memory I have about Miss Swan.
HABITS & RULES
I have watched with interest the TV programmes about the Speakmans, who seem to have an incredible knack of helping people with all kinds of phobias. Part of that is about habits and rules. As we go through life, we often develop habits and routines designed to make life better, and it is easy to drop into making rigid rules with the best of intentions. If you hear yourself starting sentences with “I always” or “I never” it is important to check whether this is a good rule that still has some benefit to your life. Or is it limiting your life? Dianetics is partly a study of people who live their lives by rules that no longer apply, and cause more problems than they solve. When you suffer a trauma, your brain collects together an ENGRAM or SCHEMA - a file of all your senses and experiences at that moment, and regards them as a warning sign in the future. Although it is often a good instinct, it can sometimes cause you to spend your life avoiding something that is not harmful at all, or even having a phobia about it. The key is that you must test those rules periodically, to see whether they are actually helping, or simply limiting your life. Tea contains caffeine, so I decided to drink it so very weak that it was not worth putting the tea in at all. I gave up having sugar in it to try to lose weight. I gave up whole milk to try to improve my cholesterol level. I stopped having drinks hot because they affect my throat, but although none of the other things improved my life but I went on doing them.
I like a nice cup of tea in the morning, but the caffeine’s bad for me.
It keeps me up awake nights, and sugar makes my jeans tight
So it’s gnat’s pee for me.
And the milk is so bad for cholesterol, and the hot water’s scalding my throat,
So it’s lukewarm, weak and, gee, it has lost the point for me
of a nice cup of tea.
I am sure you are familiar with the concept of a New Year’s resolution, but if you are trying to improve your diet and health, try to get in the habit of a monthly resolution. As each calendar month begins, introduce just one change in your normal habits, and try it for the whole month (unless it is disastrous) to see if you can find the foods and habits that help or hinder your health. For example, for many years I have started my day with porridge, and it is always possible that a regular, long-term habit like this might cause problems, so I avoided porridge for a month, but found no advantage in doing so.
Another month, I cut out processed meats, and this improved my “digestive throughput” immediately, and also seemed to improve my skin problems. However, although we are repeatedly told that processed meat is carcinogenic, it is difficult to define which “processes” are acceptable when meat is messed about so much by almost everyone who supplies it. Also, the cost of "proper" meat, fish or poultry (with nothing done to it) is up to 8 times as much as processed meat. Another point is that preservatives can cause all sorts of problems while we are still alive, and funeral directors are now saying that dead bodies last much longer because of all the preservatives in our food.
A general rule of thumb is that the less human beings do to the food, the healthier it is. I was interested to hear Catherine Tate on TV saying the same as me, she will not eat anything unless she can see what it is. People thought it was part of her comedy routine.
If you suffer from allergies or intolerances, it is essential to realise that you can’t just go on taking things out of your diet, you have to find new things to replace them, otherwise you will starve yourself, or at least lose out on nutrients. Scientists and doctors agree that there is NO recognised, reliable test of any kind that will tell you which foods are a problem, and some expensive tests available online not only miss important allergies, they can actually encourage you to cut out foods that would have been beneficial.
Being repeatedly told that carbs put on weight, and knowing that I eat less than most people, I tried for a month having MORE carbs, I didn’t gain an ounce. Then I tried to do without carbs for a month, but that isn’t as simple as it sounds. For example, potatotes are classed as carbohydrates, so imagine living for a month without potatoes, pastry, pizza, rice, wraps, corn, legumes, most fruits, milk, yoghurt, cakes or biscuits. High-carb foods include grains, such as bread, breakfast cereals and pasta, as well as sugar found in soft drinks, sweets and desserts. Mine wasn’t a perfect test because on the occasional days when I was not in control of my diet, other people kept feeding me carbs, but the result was that I put on a few pounds in an experiment that was supposed to lose weight. Recently, there has a been a lot of talk of the advantages of ketones in preserving and improving memory, but ketones are not found in foods, they are produced by our bodies from fats, so a high-fat diet (often said to be unhealthy) allows the body to produce more ketones. The downside is that even a tiny amount of carbohydrate in your diet may prevent the ketones being created. It makes me wonder how anybody ever produces enough ketones. Perhaps one day, we will learn that carbs cause dementia?
WHO IS NORM ANYWAY?
What I find most irritating is that, bearing in mind that I am not someone who pesters the doctor with every little problem, whenever I feel that something is important enough to need help, endless tests tell me I am NORMAL!
Does that mean I have to watch football, and mess about with cars?
We changed surgeries recently, and I wrote a summary of my medical history from my point of view. It turned into a list of all the things that doctors have failed to deal with over the past half-century. Beth was seeking help with an ear problem, the hospital tested by pouring warm water into her good ear, it had no effect. When they did the same to the other ear, she screamed with pain, yet she was told there was nothing wrong with the ear, so they did nothing, and the problems continue.
Our friend went to the limb clinic to get her artificial leg serviced and checked over,
they asked her to leave it with them and come back later.
When I was 11, I was given spectacles, but it was another twenty years before I found an optician who had the sense and consideration to tell me that my frequent, unbearable headaches and double vision were caused by lazy eye muscles, and could have been cured easily, years ago, by exercises.
I could never catch a ball because I couldn’t tell which one to go for.
It must have impacted on my life tremendously, I didn’t know other people didn’t have double vision and frequent headaches. The optician was amazed when I followed his advice, and my eyes improved dramatically in a few months.
At least six members of Beth’s family suffer some symptoms of the mysterious, painful and debilitating illness known as EDS, and most doctors are not equipped to diagnose the condition, but one important clue is that if members of a family have apparently rare but different conditions, and there is no obvious connection, EDS may be the link. Collagen is a major building block for the body, and its failure can cause many diverse symptoms, including…
Vitamin D deficiency
Muscle & Joint Pains
Irritable Bowel Syndrome
Allergies & Brittle Asthma
Susceptibility to Infections
Reflux & Gastro Symptoms
Dislocations and Subluxations
Dizziness & Balance Problems
Brain Fog & Lack of Co-ordination
Poor Healing & Immune Deficiencies
Heart Racing & Postural Tachycardia
Lack of response to local anaesthetic
Unfortunately, like so many invisible illnesses, EDS can easily be misunderstood, or under-estimated. As one mother so eloquently put it…
“I have watched my kids struggle to stay at school all day without ending up in the nurse's office, because if they even try to stay sitting up, the dizziness and headaches were unbearable. I have heard a cardiologist tell my child, 'no sports, I don't want you dying'. I have watched them cry in pain because of joints that dislocated with what would be normal movement to anyone else. I have watched them stay home from ordinarily fun kid activities for fear of having 'an episode'. I have watched them have such severe abdominal pain that they are crying because of the digestive issues. I have watched them have multiple procedures and tests, being stuck with I.V.s and put under anaesthesia due to all of the issues. I have watched them have multiple surgeries. I have watched them struggle to feel like any other kid their age that doesn't have all these issues, that doesn't have to worry if they will make it through their school day, that doesn't have to take multiple medications or do daily procedures at home. Most people have no clue. My kids want to be normal kids, I want them to be normal kids. I don't 'baby' them or make a big deal because I want them to FEEL normal, but when they've been taken back for a procedure, when they are having a rough day, when I have to argue to get them to take their medicine, do their physical therapy.... I cry. Sometimes only on the inside so I can be strong for them, sometimes as soon as they are out of sight of me, and sometimes at night. I have cried and struggled with trying to keep a job while feeling that to do so meant neglecting them and not being there for them, and feeling like I would get fired any day because of having to take time off. I have cried over trying to come up with the money for necessary medications or treatments because the costs for these all just snowball. I know there are so many kids out there struggling with worse and I count my blessings. I would never wish this on any child or any parent to watch their kids go through so much, so while you have your happy and typically healthy kids at home, don't begin to speculate or judge me or my children just because we 'look normal'.”
In the summer of 1990, following a long period of stress and exhaustion, trying to build up a new business, I caught a bad viral infection, which was diagnosed as scarletina at the time although, in retrospect, the symptoms resembled viral meningitis. In October, I was ill again, and couldn’t even lay my head on the softest of pillows without suffering excruciating pain, and sleep was impossible. My doctor suggested rum and hot milk, that put me out for a couple of hours, then I woke with even worse pain from lying in one position.
Not only that, it messed up my blood tests, and I was branded as a heavy drinker for a while…
“How’s the drinking now Mr Kibby?”
You’d have to know me to appreciate how funny that is!
A doctor from my surgery woke me early one morning to take me to hospital, and although I should have been impressed with his kindness, I just wondered what he knew that I didn’t! I had blood tests, and when the specialist came back I thought “what’s he smiling about?”, he said “glandular fever!” but added that it was difficult to recognise because it was “a real humdinger”. More recently, several people have described a similar experience, and similar problems with diagnosis. Since nobody knew what it was, and every part of my body was in pain, I had assumed that I was going to die, and was impatient to get it over with. One often hears of near-death experiences causing people to look at their lives afresh, and although I wasn’t really dying at all, the effect was much the same.
The key thing about glandular fever is that you must have complete rest until you are fully recovered, otherwise the consequences can be much worse…
I’m sure most people know what it’s like when, after a bad dose of ‘flu’, you reach the point where you finally push yourself out of the front door and get back to a day's work. Although I AM WELL NOW, for 14 years I didn’t recover to that point:
From working 14 hours a day, I went almost instantly to sleeping 20 hours.
In what little time remained of a day, I was too weak to do much, and it was as if I went to sleep and woke up five years later, I call it my “Rip van Winkle” period. What’s worse is that (while beggars on the street and new immigrants received benefit) the local DSS repeatedly told me that I didn’t qualify for sick pay, so I drove myself into the ground for 7 months trying to work, and got no help until I cried over their desk. The response then was “of course you are entitled to benefit”, but there is no way of knowing how much extra damage they had done to my health by then.
M.E. is a real, recognised, physical disease of the brain,
not a mental or psychological condition of the mind.
I said that it was like having a complete body transplant, because although I could still think like me most of the time, my brain didn’t seem to be able to send out the right signals to control this alien body, which couldn’t walk seven miles like the other one, it could hardly get to the end of the road. Its steering and co-ordination were off, and I had to aim myself very carefully if I was doing anything. In particular, there were a variety of pains, which I had to try to define for the purpose of obtaining Incapacity Benefit. When I awoke in the morning, I sometimes had a back pain that could only be relieved by sleeping longer. On other days, I had a very different back pain for which I urgently needed to get out of bed, and off my back. Getting up stairs was a problem but I found it less painful if I ran up, because ascending slowly meant I had to suffer the knee pains longer. Other muscle pains fell into two main types:
“Muscle Fatigue Pain” built up quickly when I used any muscles repeatedly. Sawing or sanding wood was impossible. Walking was difficult, yet I discovered that if I could manage to walk a mile or two each day, it gave significant relief from the knee pains. The need to “move more” is paramount, but some sufferers simply cannot. Electric scooters are a boon to many disabled people, I tried one for a while, but they are also the curse of the age for many others, because they make it far too easy to avoid trying to walk, and that leads to weight gain and other problems. I needed to walk every day to ease the knee pain.
“Muscle Tension Pain” meant that holding any muscles in a fixed position for a few minutes would build up pain. I went to the corner shop, bought a lettuce, and carried it back in one hand. The pain lasted for hours – from a lettuce! I learned to use a carrier bag.
But they don’t taste as nice!
Even carrier bags were a problem because most modern ones have their handles the “wrong” way round, and I found that having to hold my arm in a twisted position caused pain. Back pain was muscular, rather than spinal, and it was important to balance any weight by splitting it between both hands. I tried to explain to someone that if we arm-wrestled, I might have the strength to win, but whereas they would just walk away and get on with their day, I would suffer pain and fatigue for hours. I had strength but no stamina, so although I could hang weight at the ends of my arms, I couldn’t have my muscles tensed, or carry anything much at all in front of me. Flat objects could not be any larger than 22 inches, to fit under my arm, or I couldn’t carry them at all. (Stamina? In October 2017, I moved 60-odd instruments, the contents of a piano museum and a music studio, and our home!)
I was suffering from M.E. and unable to work. Stress, exhaustion and a major virus are the typical circumstances for its beginning, so it is sadly common in teenagers swotting for exams, as well as adults in stressful jobs - hence that ridiculous term “Yuppie flu”. There are blood tests and brain scans which may reveal symptoms, but since these tests are expensive, and achieve very little, the fact that the blood cells have unusual levels of magnesium, or that the brain’s serotonin levels are low, or that circulation of blood to certain parts of the brain is restricted, is of no help to you or the doctors, it merely confirms what we know already - you are suffering from M.E.! Its typical beginnings are a combination of major stress and a major virus, such as glandular fever, and that’s what happened to me. I spent 14 miserable years suffering from M.E. with no useful help of any kind at all from the National Health Service, they left me to rot. If the government is really so worried about the number of people who are on Incapacity Benefit, perhaps they should remind themselves what the NHS is supposed to do – treat people!
Other symptoms may include difficulty controlling body temperature, dizziness, excess sweating, insomnia, painful glands in the neck and armpits, palpitations, sensitivity or intolerance to light, noise, alcohol or certain foods, or sore throat and headaches, or visible muscle twitching.
Recent research suggests that with M.E., activity can produce as much as twenty times the normal amount of acid in the muscles, which explains a lot about the pain. I met an NHS office worker recently, he said “If you had M.E. for years, how come you haven’t got it now?” – which suggests to me that the doctors around him have given up trying to treat the illness. Even the M.E. consultant now has it. It is disturbing that, among the small minority of the population who are searching here for piano history, so many have the illness, or know someone who has it. In 2009, there was talk of a new urine test for detecting M.E., based on new research by Professor Kenny and Dr Chris Roeland in Belgium, which suggests that bad bacteria in the digestive tract produce a build-up of hydrogen sulphide gas: in large quantities, this is believed to suppress the immune system, or even cause suspended animation. Whether this proves to be true or not, it seems finally to have laid the ghost of an idea that the illness is psychological. The very suggestion that it might be “all in your mind” is not only deeply offensive to genuine sufferers, it is inaccurate, and makes no reference to the very real physical symptoms. I have to ask – is there any proof that M.E. has anything at all to do with immunity problems? In all those years of suffering, I had less colds, coughs and minor illnesses than at any other time in my life.
When my Mum had been suffering with leukaemia for years, the doctors began to call it “chronic leukaemia” and this worried Mum. She didn’t believe the doctors when they said it didn’t mean it was serious, because in ordinary English, we tend to use the word “chronic” to mean that something is bad or serious. In fact, the answer is much simpler than people realise because, like so many words beginning with “chron”, it refers to time, and the fact that a condition has been there a long time.
CHRONIC FATIGUE SYNDROME
In the early stages, the illness I had is often described as Post-Viral Fatigue Syndrome (PVFS), and only after a longer term will you be likely to hear the term Chronic Fatigue Syndrome (CFS), because CFS is a result of the sustained pain. Some doctors reserve the term Myalgic Encephalomyelitis (M.E.) for more serious wheelchair-bound cases, whilst others avoid the term altogether, because it tends to cause panic. Politicians also seem to prefer us to suffer CFS, rather than show the real figures for M.E.. Because of the modern trend towards so-called “open punctuation” (which means not bothering to punctuate at all) I prefer not to talk about “ME”, and stick to CFS, but they are not really the same. There is an old myth that Chronic Fatigue Syndrome is another name for M.E., but it is becoming increasingly clear that this simply is not the case. Any condition that causes persistent, chronic pain can lead to CFS, my pain was M.E., but it could equally have been E.D.S., fibromyalgia, hypermobility, meningitis, migraines, arthritis, kidney disease, spinal problems, etc.. This leaves me struggling a bit to decide which of the aspects I am discussing are attributable to M.E. at all! CFS occurs because we simply do not appreciate how much we are coping with in terms of the physical exhaustion and emotional stress caused by constant, massive long-term pain. I was never offered simple, strong pain killers, and I find myself wondering if they would have prevented the M.E. from causing Chronic Fatigue in the first place. I am also convinced that many people who are written off as “depressed” are suffering from CFS caused by stress and emotional pain, and would be fine if someone just took the problems away… if only it were that easy.
Because M.E. affects the serotonin levels in the brain, I was asked several times by doctors whether I thought I was depressed and, because I knew several people who were, I felt quite confident in saying that I found too much joy in too many things to call it depression. I described it as frustration, which I believed would disappear if they could just remove the problem for me! Unfortunately, doctors have a tendency to label the effects of all life’s real problems, stress and frustration as being “depression”. It is only when they find cases which have no apparent explanation that doctors use another classification - “Endogenous Depression”. Telling someone they have this is like saying they might as well take a long walk off a short pier, because there is no cause for their depression, therefore no cure. I was persuaded to try Prozac ”just in case it was depression”, and that nasty little experiment put my progress back months. Although some anti-depressants can have other beneficial effects, such as muscle relaxation, the whole concept that CFS can be treated purely as a psychological disorder ignores the proven physical, chemical, and medical aspects of the illness.
One of the most offensive remarks that cropped up from people around me was “I think I might have that” from people who just felt tired. Someone recently commented on “when you used to get very tired” and I pointed out that anyone would get tired if they had that much pain. I am sure you must know what it is like if a pain in one small spot becomes so intense that its effect seems to spread to a larger area. At times, I had pain in almost every part of my body, and they all seemed to join up. Nobody can see your pain, and illnesses that are visible are so much easier to understand, whereas someone with angina or leukaemia might show no outward sign. People remarked on many occasions about how healthy I looked, and there was often the implication that I couldn’t really be that ill, so I pointed out that it is easy to look well when you spend most of your time resting. Also, if I was very ill that day, they wouldn’t see me! Nevertheless, CFS does have an “Andy Capp” image, like the cartoon character who couldn’t get his back off the bed, except when he had a chance of a good game of snooker, and although nobody ever called me lazy to my face, the implication often seemed to be there. On the contrary, it is becoming clear that this illness strikes people who push themselves too hard, and that’s a process one has to learn to un-learn. No doubt I may seem lazy to some people now because I have the good sense and assertiveness to say “NO” to activities that I feel may be too much for me. On a rare good day, after several days of rest, it was not obvious that anything was wrong with me, and my brain could cope with more than most people’s: I could go on stage, playing any two of three keyboards and playing bass on a pedal keyboard, operating another pedal with the other foot, pressing buttons, watching a computer prompter, and even singing, all at the same time! However, on a bad day, I couldn’t remember my daughter’s name, I was dropping things, spilling drinks, bumping into things, falling over, confused, slow-witted, clumsy, uncoordinated, aching, sleepy, forgetful, bumbling around like an old man.
When I was 49, I used to joke that I was wearing my age back-to-front!
Unfortunately, even with rest, one cannot always guarantee which day is going to be a bad day, and it is impossible to be a reliable employee. I once turned up to do a concert for the local organ club, but by the time I had lugged my music gear in, and set it up, I was so exhausted I couldn’t think straight, a disastrous gig!
Recently, someone asked why I seem to be younger and livelier than I was 20 years ago, I just mumbled something about the portrait in my attic.
Anyone who is bored, stressed, upset or in pain will have their own ways of coping, whether it is smoking a cigarette, or drinking alcohol. Some get completely drunk, or turn to drugs, but none of these options has ever appealed to me, and my natural method of escape has always been to relax and SLEEP. When, therefore, I found myself in persistent chronic pain, it was a natural thing to try to sleep it off. I don’t know to what extent this is relevant, or whether people who use sleep as an escape are more likely to sleep their days away, rather than hit the bottle. Conversely, I would like to know whether people who turn to drink and drugs are less likely to suffer from CFS? Would statistics reveal that CFS sufferers tend to be people who do not drink or smoke?
Please email me if you have an opinion, or want to tell me how you cope.
Invisible illnesses are frustrating, and you can’t feel someone else’s pain.
When some complete stranger in a shop asks “how are you today?”,
do you feel like giving them a long and detailed list of all your ailments, or is it just me?
Because of the long periods of inactivity, I should have been given anti-coagulants to reduce the risk of blood clots and Deep Vein Thrombosis. At a time when I was too ill to think for myself, I should have been warned of the long-term muscular consequences of inactivity, and offered home visits, physiotherapy, dietary advice, aromatherapy, massage, reflexology, acupuncture and various other forms of help, but my own doctor at that time expected me to walk to the surgery every so often just to pick up a certificate.
No help, no advice, no sympathy, no therapy, no relief – NO HOPE!
The benefits system also required me to travel 40 miles for a medical. I felt as if I was being penalised for being ill, like the obese person who asks for a knee operation, or the alcoholic who wants a liver transplant. Conditions that have affected me before and after that illness were ignored, and I was given no help at all with them, so treatments that could have offered a little relief were denied to me. Not only that, but in much the same way that old people are fobbed off with “well, you are getting old”, I was told that just about any ailment that ever afflicted me was to be expected with CFS. Bowel problem? Dry throat? Back pain? Eyesight problem? Skin irritation? Painful knee?
“It’s to be expected.”
A friend told me “my wife’s illness began when our daughter was born, she is 23 now”. Some people continue to suffer for years, and I noticed that when well-known celebrities were reported as having the illness, it often ran for 6 to 9 years, but I have recently come across several other people who are still suffering after 20 years, so something needs to be done about this growing problem. CFS seems to have some aspects of the Seasonal Affective Disorder (S.A.D.) that pulls people down during the shorter, darker days of the winter. Like many other people, I found that its peak period coincided almost exactly with the changing of the clocks after British Summer Time. Some people have also advanced the theory that, being late risers, CFS sufferers miss out on sunlight, and develop a deficiency of vitamin D or E. Light boxes may help, the only other answer is to let the sunrise get into your bedroom, try to be out in the daylight as early as possible, and as long as possible, even if it just means sitting in the garden. (It is important to understand that your skin needs to absorb sunlight, so it’s not enough to be out there, you need to expose as much skin as decency permits.) Being a musician, and therefore used to night work, this was difficult for me, and changing shifts can wreak havoc with CFS. You need to develop some kind of regular routine, but the idea that there is something immoral about sleeping late and working into the night has been an annoyance to me all my musical life, and if musicians followed this train of thought, there would be no evening music.
The local CFS “help group” only met in the morning, how thoughtless!
I found that I needed to set a regular time to go to bed, get up when I could, and adjust the hour when I began more physical activities like housework or shopping. If 3pm. is too early, try 4pm., and gradually make it earlier if you manage to cope. Another point is that if you rest too much in a day, you may have trouble sleeping that night, and the whole sleep pattern can take several days to settle down again.
My doctor often asked if I had trouble sleeping, I said “NO, I HAVE TROUBLE WAKING UP!”.
Odd things can happen, and I know of someone who recovered from CFS after having a ‘flu’ jab. Some hospitals have reported limited success with Vitamin C, and you need not worry about overdosing with this, because your body simply throws away the excess. I felt that I was noticeably better when I began drinking cranberry juice daily, but you should avoid the diluted sugary versions. Some people make great claims for liquorice or cinnamon, or the B vitamins, but apparently, some new patients are trying adrenalin pills, and almost getting high on them.
Chronic fatigue is on the increase, hundreds of new cases are reported each year in East Anglia alone, it has been estimated that there are now over a quarter of a million sufferers in the UK, and the cost to the nation was placed at a hundred million pounds in 2010. Like obesity and aggression, it seems to be a symptom of junk food, additives, and modern living, so basically, just avoid anything that is strongly flavoured until you are WELL! If you can’t cope without snacks, use tasteless, boring things like rice-cakes, carrot sticks are tastier. Also, use foods that have only one obvious ingredient: a piece of plain chicken probably has only chicken in it, whereas a sausage can have all sorts of strange additives. A banana is what it says it is, but a “banana-flavoured” snack is anyone’s guess.
In the end, you have to remember where it all started: Chronic Fatigue Syndrome produces chemical effects in the brain that are similar to those of stress. Add real stress to this, and you will MULTIPLY the effect.
STRESS IS A KILLER!
It acts in many different ways, but it will get you if you don’t deal with it, so don’t just ignore it. How many people, I wonder, suffer from bruxism - jaw pain or migraines caused by clenching or grinding their teeth? It has been estimated that sixty per cent of days lost from work can be attributed to stress. The so-called “Stress Management” techniques may seem to help you to cope, and calm yourself, but they don’t remove the source of the stress, so it goes on, and the better you are at “coping”, the less likely you will be to deal with the underlying problem. Another thing to remember is that in the long term, some of the relaxation techniques can, when used to excess, actually make your heart rate become slower, and this is not helpful to your health. My acupuncturist alerted me to this problem, and fixed it. I thought I just naturally had a slow pulse.
The body has a natural defence mechanism to fight short periods of stress, by delaying its effects, and giving us an adrenalin boost to get through the problem. I remember an occasion when my dog suffered a particularly horrific accident, and I was impressed at how well I coped with rescuing her… until the following day, when all the distress and shock caught up with me. The problem is that this mechanism does not cater for long periods of continuing stress and if, for example, you have just escaped from a ten-year marriage to an alcoholic, perhaps even found a new love, you may think it is time to sit back and relax, but that is exactly when the stress catches up with you, and you could be in for a 5-year wind-down from your 10-year failure to address the problem. This may not just appear as a state of mind, it could manifest itself in real physical symptoms. For example, migraine sufferers often find that their attacks come after the stress has subsided. I suspect that many CFS sufferers were, like me, always predisposed to psychosomatic illness, in which real physical symptoms are brought on by a state of mind. I’m sure you’ve heard children say “my tummy hurts” when they are not coping with a situation, and it really does hurt. Unfortunately, if you “think yourself into a cold” it is not “all in your mind” any more - it is a real illness, and you can’t just think yourself out of it!
“AN IDLE MIND IS THE DEVIL’S PLAYGROUND”
Keep your brain busy with something more constructive and challenging than the gogglebox, or the gremlins will strike, and you’ll sink from mere frustration to self-pity and REAL depression. I think computers are the ideal answer for people whose bodies are not working well. Despite their difficulties, (which are a useful challenge in themselves, and should be a lesson in patience) they open up many avenues for constructive, creative thought, and keeping in touch with the world without excessive physical effort. Also, adrenalin is an important aid to recovery, so try to find activities that you can manage, which give you some sort of a “buzz” even if it is only something like family research at the computer. I am not yet convinced that taking adrenalin pills is the answer! Collecting information and pictures on a favourite subject doesn’t have to cost you anything at all, but remember that a laptop or tablet offers you more choice of positions for comfort.
Artistic, creative people seem to be prone to CFS. Perhaps, having overcome it, we have to approach it as if we were alcoholics - “My name is Bill, I’m a CFS sufferer” - with the implication that it may well happen again if we don’t take care of ourselves. When people say how “lucky” I am to be feeling better, I quote Eric Clapton…
“It’s funny, the harder I work at it, the luckier I get!”
It takes effort and determination, but you may reap the benefits for life. I hope this document may help people who are still suffering what I went through. Do, PLEASE, let me know if you find it helpful, or want to make suggestions about improving it.
Many CFS sufferers seem to have experienced agoraphobia to some degree. Despite the simplistic dictionary definition, agoraphobia is not a “fear of open spaces”, but rather a fear of leaving one’s safe territory, and venturing out into the wide world, at the risk of suffering whatever abuse, violence, aggression and other problems may be out there. For example, you may run a successful business, but find certain clients impossible to cope with, or it may be travelling that is your problem. A doctor once told me that there are two main types of sufferer: the ones who let their problems pile up, and never deal with them, and the ones who are married to such people, and suffer the effects vicariously. At the time, I fell into the latter group. There is, however, another category, people who, for reasons beyond their own control, cannot solve their problems.
All the pain and fatigue associated with CFS has a severe effect on one’s ability to take in information and remember it, and this can be frightening. On one occasion, a friend drove me to a small town, where we went off to different shops. When I had finished, I was horrified to realise that although I knew the town well, I had absolutely no idea where the car was parked, where she had gone, or even which way I had approached the shop. I panicked, and wandered around in a very distressed state, I was not lost, but I thought I was losing my mind. On another occasion, I travelled to Southwold and tuned a piano, but had no recollection of the street, the customer or the piano afterwards.
I tried being old, but I couldn’t get on with it.
It has left me with a greater idea of what it might be like to suffer dementia, and many people around me are constantly looking for signs that they may be starting to experience it, although it often may be less about the failure of memory, and more to do with failing to take in new information in the first place. I am certainly much more tolerant than I used to be with old people. Interestingly, because my life has always been about sounds, the part of my brain that deals with sounds is often overloaded, especially the constant process of arranging music in my head, so I am more likely to remember something I see rather than something I hear. When I have asked Beth if she wants tea or coffee, I often forget what she answered, but if she hand-signals the initial letter, I will remember!
ARE YOU GETTING FORGETFUL?
Or have you just forgotten how much you always used to forget? People forget things! I was driving one day, and wanted to check my eyesight for reading number plates, so I read the number plate of the car in front, then backed off a bit to see how far away I could be before I couldn’t read it anymore. What shocked me was that at that point, I couldn’t remember what the number was! This is nothing to panic about, it just revealed a process that is going on all the time. Every day, you have at least 5 senses constantly sending information to your brain, and if you remembered every single item, your brain would be overloaded, so we have a short-term memory which just holds the information temporarily, and then your brain decides whether you really need to keep it. It usually does a good job, but sometimes it will throw away something you really wanted to keep. For example, imagine if you remembered every car registration you ever saw!
We have always known that when people get old, they can become dithery and forgetful, but now we may suddenly reach a moment in our life when we are stuck with the label “dementia”, whether it’s Alzheimer’s or some other type. Each year, about one in 300 of the population is diagnosed, but why is dementia on the increase? Of course, people are living longer, and it is thought that 40% of people over 80 have it, but this does not explain why increasing numbers of younger people are starting to get dementia. Some sources suggest that pollution from cars and aircraft can be to blame, but nobody seems to have a definitive answer. Some say that the horrific electric shock therapy used on some patients in earlier times is to blame, others point accusingly at prescription drugs. Sadly, in serious cases, the patient can end up in a care home, and if life was ruled by cold logic, we could argue that there is no point in visiting them, because they don’t know who we are, and they don’t remember us coming, so they won’t miss us. However, most of us just cannot write off our loved ones like that. Nature’s way is that eventually, without support, such people will eventually die through some mishap, but we can only guess whether this is “God’s will”. Dementia s now said to be the leading cause of deaths in the UK.
Even the manufacturers agree that drugs do not fix dementia, or even improve it, or halt its progress, so why are so many drugs given to dementia patients? Is it just to shut them up? I hear great claims made about certain foods that may stimulate the production of ketones to prevent brain atrophy, including coconut oil, but in order for our bodies to produce more ketones, we have to adopt a high-fat diet, which many people agree is bad for us. Not only that, the tiniest amount of carbohydrates can nullify the effects of the high fat diet, and prevent ketones being produced. If you spend 37 dollars on the Memory Repair Protocol and find that its great claims are justified, it really is a very small amount of money to spend to prevent, or reduce, or even cure dementia. I confess that the long-winded promotions for it online do not create confidence, they avoid telling you anything useful most of the way through, to ensure that you buy the product.
When you are ill, it is very easy to slip into the habit of getting up out of bed, then sitting around in a half-asleep state, drifting in and out of sleep. You must avoid this, or it will end up making you confused and disorientated, and you may be shocked at how quickly you can get to the point where you are not sure which memories are of reality, and which were just dreams. Your mind and body need to have definite lines drawn between sleeping and waking, so try to sleep in bed as long as you need to, then get up and be awake as long as you can: develop a definite routine which tells your mind and body that you are going to bed to sleep again. Draw a firm line between being up and awake, or in bed asleep, whatever the time of day. Many sufferers sleep longer for the simple reason that sleep is not satisfying, and my experience of this is that if I can spend a day being physically active, sleep is much more restful, but if you have a brain like mine, that dreams up more tasks than a body can ever complete, days are mentally challenging, and the process of wrestling with the day’s challenges does not stop when you try to sleep. If only I could switch off my brain… or employ a team to do all things I want to achieve. I always wake up to a list of tasks that demand my attention.
IRRITABLE BOWEL SYNDROME
In some instances, people diagnosed as having IBS turn out to have coeliac disease, which is not an allergy or intolerance, it is an immune problem triggered by gluten, a substance that none of us really need in our food, so I don’t know why it is allowed. Various auto-immune conditions can cause IBS symptoms, but whereas there is no test for IBS, you can have a test for coeliac disease. However, if you have coeliac disease, you can still suffer additional symptoms of IBS as well, gluten is not the whole answer, so please read on…
For me, one of the lingering effects of the CFS has been IBS, another mystery illness that has no known cure, but recently, I have found something close to one. There is a known medical condition with a fancy Latin name in which, when waste matter reaches the descending colon, it triggers chronic fatigue that is instantly relieved when the bowels are evacuated. This is just one symptom of IBS, it used to add to the confusion of CFS, and if I got up early, as many people do to get ready for work, I could expect up to 5 hours of diarrhoea. I started off with the notion that drinking more fluids makes me feel better, and a full bladder also puts pressure on the bowels to get them working. I developed a simple routine where every time I have been to the toilet, I drink as much as I need to top up my fluids, then don’t drink again until I have been to the toilet.
This improved my IBS considerably, and I decided to try taking it a stage further. All the day’s food is split into separate items, each having (as far as practicable) a single, visible ingredient. This avoids most of the hidden ingredients in things like cakes, casseroles, sausages, soups, sandwiches and sauces, as well as cooking fats, frying oils, etc.. After each visit to the toilet, I top up my fluids, and then eat just one element of my day’s food, instead of having whole meals.
It is often said that the stomach is the size of a fist, so I measured the volume of my fist, and it is about the same size as a coffee mug. It seems reasonable to me that I should not eat more than a mugful of food at one sitting. There is a theory that our bodies find it much easier to digest a single ingredient at a time, and also this slow trickle of food means there is never a sudden large parcel for the digestive system to deal with, so the dull, aching fatigue never happens, I never feel hungry, and never get indigestion.
After a night without food, I start with porridge. Muesli is a mixture of ingredients, so if you eat it, you are at the mercy of whoever made that mixture. Porridge acts quicker, so much so that by the time I have switched on the microwave, my bowels are ready to rumble. It would be an interesting experiment to make the porridge every morning, but not actually eat it! IBS has psychological aspects to it, and you can’t fool your own brain… I have tried.
Even if you are eating out, you can still exercise some control by choosing items with separate, visible ingredients. Meat, cheese and salad are fairly definable, but avoid sauces, relish, coleslaw, mayonnaise, etc.. Often, my worst enemy is white bread, but some of those little “healthy” snack bars cause me big problems. On occasions when I am breaking my usual diet on holiday, or eating out, I become aware that my bowel problem is gradually improving, but there is always an element of risk.
Fibre is essential to good digestion, and although some people find artificial fibre helpful, the ideal is to eat PLANTS that have not had their structure destroyed by cooking, processing, or smashing them up to make smoothies. Did you know that cooking fruit and vegetables reduces the amount of vitamins, fibre, minerals, and enzymes? Try to eat them raw or, if you must cook them, do it in a soup or casserole so that the goodness is trapped in the liquid.
OH! OH! CANDIDA!
In the absence of professional help with my CFS and IBS, I began researching on the internet, and repeatedly found the suggestion that where people had been diagnosed with two apparently separate conditions - Chronic Fatigue Syndrome and Irritable Bowel Syndrome - this often indicated what was really one single condition caused by a parasitic fungus or yeast called
(Better known as Thrush.) Perhaps I should have asked a vet: It was well-known to farmers as a problem in pigs many years ago - probably all that junk food! They were treated by providing them with charcoal, which the pigs instinctively knew they needed to eat. It is said to absorb the candida and carry it out of the body. I’ve never heard of edible charcoal being used to treat the condition in humans, although it is available from health food shops. Candida exists in everyone's body, but is usually confined to the lower gut. However, the theory is that if suitable conditions exist, candida may thrive to the point where it begins to head north and invade more and more of the digestive tract, a condition known as candidiasis. Working its way upwards, it can travel not only through the small intestine but beyond the stomach to the throat, tongue, nose, and sinuses, and candida can even get into your bloodstream. Sufferers may describe a feeling of dry soreness extending from the nasal cavity right down to the chest. Another typical sign is having a pot belly when you are not otherwise fat, in common with habitual singers like me! Unfortunately for me, this “visceral fat” around the vital organs is now reckoned to be the most dangerous - I’m not fat anywhere else! The Candida problem is well-documented on the internet, and in books, although anyone with the money can start a website or publish a book, and there is, of course, a lot of rubbish written in both media. However, the book about the Atkins Diet includes a very useful chapter on yeast infections, principally candida.
If you can afford it, you should look for a Nutritional Therapist to help you, we found Fiona to be excellent, and she fully accepted the problems of candida, as did the three NHS dieticians we consulted at our local hospital. For a while, we had an excellent General Practitioner who treated people for throat problems caused by candidiasis, but five GPs (who only receive a fraction of the training about diet and nutrition) have told us that it is all rubbish, or even refused to discuss the matter, a very strange reaction more akin to what one expects from a scene in a corny old vampire film...
“Let’s ignore it and it might go away.”
If you want to know about diet, ask a dietician, not a GP. Regular meals containing Glutamine may help to keep energy levels up. There was even the implication that it is “all in your head” or that I got better because I believed I would. I didn’t believe in the diet, I didn’t believe in acupuncture, but they helped! Since conventional medicine had no help to offer, and no relief for Beth's pain, bloating, and fatigue, we looked at alternatives, and proceeded with the candida thing, with help from an excellent guy called Simon who runs a health food shop in Bungay. Beth formulated her own diet to avoid all the problem foods associated with candida, and began to try it, knowing that some people take months to show any improvement. Then, because some of my symptoms were similar, I decided to join her on the diet, although cutting foods out gradually, rather than a sudden drastic change of diet. Within a very few weeks,
FOURTEEN YEARS OF CHRONIC FATIGUE WENT AWAY!
The Supreme Court of Catalonia has ruled that CFS is to be treated as a permanent disability. This seems like good news for anyone seeking to claim benefits, but bad news if you start believing that you can never be cured - it's just not true! Interestingly, I began re-introducing foods one at a time, one a week, and waited for the crunch, but NONE of the foods that I cut out seem to cause me any significant problem now if taken in moderation. All my life, I have been warned about the dangers of eating chips, but enjoying an occasional portion does me no more harm than most foods, I just avoid having them as part of regular meals.
Can you begin to imagine what it would be like for you to wake up tomorrow and find that you were no longer ill? It had not been unknown for me to have a good day, and even 2 or 3 days was not beyond possibility, but then it was a week, a month, a year, and I dared to hope that I was free. Being much busier than I have been for years, my brain still struggles to cope with the stimulation of a full day, and I can get very sleepy, but that is improving. Ideally, I still prefer to restrict myself to one major event per day, but this is more to do with organising my mind than my body.
As people get older, they seem to spend more and more time discussing waste products, and if you ask an IBS sufferer "was it a number 1 or a number 2" they are quite likely to say it was a number 3, in a whole new category. Discussion about what is normal seem to indicate that people quite often vary, from 3 times a day, to once every 3 days! It really is worth staring down into the toilet pan and diarising your diarrhoea, to try to judge how your digestive system is operating, so I developed a 5-point grading of the output for the purpose of keeping charts, but in a once-in-a-lifetime event, I had to add a number 6 to the scale. Our French friends insisted on feeding me lots of dry toast, which turned to dust in my mouth. In the course of the day, it solidified my motions, until I eventually gave birth to an object which was roughly the size, shape and colour of a bottle of Coke. If you think of this process in reverse, trying to ram a bottle of Coke into your body until it disappears from sight, you can imagine that getting it out was a long and painful process, especially as the blunt end came out first.
Number 5 is firm and bulky, comes out cleanly, and flushes away without leaving any residue.
Number 4 is still firm and bulky, but a bit more messy, both coming out of your body, and going down the pan.
Number 3 is small and soft motions, almost liquid, so some people would regard it as diarrhoea, and urgent.
Number 2 is almost completely liquid, and you need to be near a toilet as it empties your bowel in a second or two.
Number 1 shows no sign of any solid matter at all, and is usually the result of an infection or food poisoning.
AGAINST THE GRAIN
There seems to be a common obsession with the idea that we must have hot, cooked meals, but it turns out that combining ingredients, additives, flavouring, and even the chef’s normal creative process of cooking ingredients together can have a very bad effect on IBS sufferers. Not only that, but why do people think there is any virtue in putting HOT food down their throats? There are lots of nutritious foods that don’t need to be cooked. While we are at it, let me provoke this thought… Try to separate eating from the concept of sitting down, to see if your digestion improves when your body is not folded in the middle.
When I am out shopping or whatever, I sometimes become acutely aware of the pain of someone who walks past me, although I don’t know whether it is physical or emotional pain. In recent years, I have found that when people have mysterious illnesses that the doctors have trouble diagnosing in weeks or months, I can sometimes sense instantly where the source of the problem is in their body. For example, referred pains are often somewhere quite different from the actual source of the problem. I can sometimes do this remotely from a photo, drawing, diagram or an email, but quite what use this has to offer the world is beyond me, since I am unaware of any ability to do anything about healing the problems, and doctors would understandably be unlikely to take me seriously. I sensed that my GP had a problem in a particular part of his body, but didn’t feel I could say anything. He died soon after, but it seems that he had known about his illness for some time.
DOWSING FOR HEALTH
I mention on my blog page that I use dowsing with a pendulum to extract things that are buried in my subconscious, and one of the applications for this is in examining my instincts about people's illnesses. What I can’t explain is how this knowledge gets into my head in the first place, but dowsing is especially useful when the pain or problem is not in an obvious location. Of course, if you have a pain in your knee, there's not much point in me saying "the pain is coming from your knee"!
Back in the nineties, a friend who was in a wheelchair after a car accident told me that he was unwell, and the doctors couldn't find out what was wrong. I drew a rough sketch representing his body, and dowsed with a pendulum to try to find areas of his body where there might be problems or illnesses. He was amazed when I pointed out 8 places and asked if he knew what might be wrong there. He ran off a list of 7 of them, illnesses, strains, accidents etc., but took some time to work out that the 8th was the injury to his spine which put him in the wheelchair. It seems that our bodies continue to bear a record of past traumas.
My girlfriend at the time was suffering great pain from the damage caused to her leg by the removal of a cancer, so I dowsed to try to find spots where I could massage, to relieve the pain. Not only did I achieve that, I also found layer upon layer, and each time, the removal of the worst pain would allow her to become aware of a lesser pain that had been masked by the worst one.
When a friend told me that her husband had stayed home because he was in great pain, and the doctors couldn't find out what was wrong, I immediately sensed the precise location of the problem, but felt embarrassed to say anything, so I wrestled with it for a few days, and used dowsing to seek some sort of confirmation of my instinct. Then I wrote him a letter, and he said that by then, the doctors had found the problem, and I was exactly right about its location.
A friend emailed me from France, and said that he was very ill, and doctors couldn't find the cause. I stared at a photo of him and became aware of an odd shape, superimposed on the photo in my mind, although at the time, I had no idea what it was. It was taller at the right of his chest, and tapered to a point at the left. Looking at anatomy diagrams, I learned that this was precisely the shape and position of the liver. He wrote “Dear Bill & Beth, Sorry if I have been a bit quiet! I have been going through a regiment of medications ~~~~~~~~~~~ I finally take care of the problem that Bill already knew I had! I still remember the day you told me what was wrong with me before I even went to the doctors.”
Several people have suggested that this may indicate that I have some healing ability, so I contacted a number of healers, including Christian healers, and they all said the same thing – they couldn’t offer me any advice, because they can’t do what I can do! That is a bit of a shock! I struggle to find ways of healing the problems I detect.
I wonder if I could do it for animals, I haven’t had the opportunity.
A friend’s father had a problem in his leg, and just from an email, I told him where I thought the source of his problem was, and I turned out to be right. I tried laying my hand gently on the spot, and focussed my thoughts on trying to help, but was not aware that it helped. Next morning, he found four red marks where my fingers had been, but I have no evidence that I helped the pain. One if the things that shocked me was the concept that old friends who had known me for years (and happened to be Christians) were concerned that since I am not a Christian, this gift might be coming from Satan. What if I were Jewish, or Buddhist? Someone I know feels heat at the point of someone’s pain, and has developed a way of grabbing hold of the pain, and throwing it away.
Everyone varies in the way they feel from day to day, but this is often taken to an extreme with illness, and it is difficult sometimes to know if you have ‘flu’, or just a bad day. The way to achieve a better understanding of this frustrating fluctuation in any illness is to read up on biorhythms, and although they won’t make you better, some people feel that biorhythms help them to plan their lives more effectively. They certainly will help you learn to be more tolerant of yourself, because different aspects of our bodies and minds fluctuate at different rates, and if you learn to recognise which aspect is giving you trouble that day, you will probably find that the particular biorhythm is low. For example, the emotional biorhythm has a cycle of exactly 28 days from birth, (unlike the menstrual cycle, which varies) and it goes critical every 14 days. Suddenly, one day, for no reason at all, you feel weepy. What day of the week is it? The chances are it is the weekday on which you were born.
If my Intellectual biorhythm is high but my Physical one is low, it’s a good day for designing a website, but a bad day for digging the garden. It’s a good day for writing songs too, but if my Emotional is low, they will probably be sad songs! When someone is in their 58th year, there is a day when the biorhythms return to where they were at birth, but it is difficult to see any particular trend or effect from this.
If you have a modern computer or phone, you can get a free app that instantly shows your biorhythms for the day. Fascinating! You will find that there are periods when your biorhythms spend a couple of weeks being almost aligned, so EVERYTHING swings from high to low and back repeatedly over a period of weeks, and you could be forgiven for thinking you are bi-polar. After months of bad weather stopped me getting on with outdoor work, suddenly there was a lovely sunny day, and I thought I should get on. I sat in the chair, feeling very little of anything, no sense of urgency, no brain power to plan anything, and absolutely no interest in getting on with the work. It’s on occasions like this that I look up my biorhythms, and sure enough, they had all hit rock bottom at the same time, so nothing was achieved for a few days. Time to rest, relax and try to enjoy doing nothing in particular.
For most of my life I have understood that delirium was a very serious, major problem, but now I hear it being described as “normal”! I was rushed to hospital in 2001, I was delirious because of a high fever caused by cellulitis, but nowadays, if someone close to you is admitted to hospital, you may be told that they are suffering from “delirium, nothing to worry about, it is quite common in people coming into hospital”. I refuted this, and turned to the internet seeking support, but it said “Delirium is the most common condition to afflict people admitted to hospital”. When did this happen? I have known loads of people who have been admitted to hospital over the years, they were not delirious at any stage, so why is it happening now? Are they delirious when they arrive, or is it a result of some new process at the hospital?
Hydration is the very simple answer to so many illnesses. A lot of aches and pains are aggravated by shortage of fluids, which can cause a chest pain rather like heartburn, and severe dehydration may even lead to hallucinations or delirium. Many sources now recommend taking two litres of water a day, which I find easy to manage, although a lot of people make such a fuss about it, but some say this is a myth spread from the USA, and it is vital to understand that TOO MUCH hydration will dilute all your bodily fluids. Another rule of thumb is that if your urine is coloured or smelly, you should double your fluid intake, and the colour is probably your best, safest guide. Some nutritionists say that tea and coffee, despite being made with water, can counteract hydration. (Others say it is rubbish.) A simple idea is - whenever you are waiting for the kettle to boil for a cuppa, drink water, but make sure it is filtered, or you may be adding to your problems. Cold water can be refreshing, but many Chinese people carry a flask of tepid water, and sip from it through the day, rather than drink large amounts of cold water from the fridge. Having very cold things like ice cream is as unnatural as eating hot food, though I love it. Hydration is not just about water, most drinks (except alcohol) will help your fluid levels, so try to vary them, instead of forcing yourself to drink gallons of water. Indeed, there are some conditions such as diarrhoea where too much plain water is discouraged. After a night without fluids, I start my day with five different drinks.
Do you chew gum to stimulate saliva production? Then you need to be aware that what you are doing is encouraging yourself to take in LESS fluids by recycling what is already there. Not only that, the bodily fluids that are converted into saliva are then swallowed, and passed out of your body as urine, so chewing that gum REMOVES fluids from your body.
Of course, drinking more fluids means going to the toilet more often, indeed the whole purpose is to flush the toxins out of your body, and the ideal is to have some reliable means of reminding yourself to take fluids at regular intervals, so this is my suggestion: After you pass urine, drink as much fluid as you like, but don’t have any more until you have passed urine again. This will soon become routine, and going to the toilet will remind you to drink.
Don’t wait until you are thirsty to drink!
When my Dad died back in the nineties, a nurse gave me a very simple explanation of what had happened. I have no idea how scientifically accurate it was, but it made perfect sense, so I will expand on it. The human body is full of cavities which can cope temporarily with excess fluids. In the upper body, the fluids eventually pass out as urine, but The Designer made a slight error in not providing urine tracts for the feet!
Imagine if you were busting, and you could just take your shoe off and relieve yourself in the gutter!
If you get a build-up of fluids on one side of your body, some of it may work its way down to your foot, causing swelling. If the cause is not dealt with, the fluid will gradually fill up your leg, and begin to spill over into the other leg, which also starts to fill up and swell. When your legs are full, if nothing has been done to stop the build-up of fluid, it begins to accumulate in your abdomen, and if left untreated at this urgent stage, it will swamp your vital organs, and you may die. Dad died because he never listened to doctors, and he wouldn’t take his water tablets because they made him keep going to the toilet. Yes, Dad, that’s the whole idea!
Swelling is usually a collection of fluid in a part of your body, so it is difficult for some people to grasp the idea that it can sometimes happen because you are not giving your body enough fluids, so it hangs onto what it has. You only have to think of children starving in Africa to realise that they have swollen bodies. Sometimes, oedema indicates a lack of protein in your diet. Your liver converts fat into energy, but it needs water in order to do this. Often, the simple solution is to drink more water. If you don’t like taking pills, try natural diuretics like asparagus, bell peppers, berries, celery, garlic, grapes, melon, and onions. Keep your feet above the level of your hips for as much of the day as you can manage, to encourage the fluids to leave your legs, and put something under your bed to raise your feet a few inches. Wear compression stockings for the same reason. Drink lots of water to encourage your body to disperse fluids, by going to the toilet. It’s very easy to suggest moving more, to help your body shift the fluids, but all too often, oedema happens when people are immobilised by obesity, illness, injury or disability. When I suddenly had to a lot of manual labour for weeks, I found that a lot of fluid in my body was released.
Imagine if your body was like a huge mixing desk, covered in controls and switches that could adjust your bodily functions to make them as good as they can be. That’s what acupuncture is like. When you go to a doctor, do you come away feeling that nothing was achieved? It is important to understand that acupuncturists have quite individual, creative ways of using their knowledge, and some are better than others, but they can often achieve instant results, with no drugs to produce side effects. The needles are no thicker than a human hair, so you may hardly feel them puncture the outer skin, and when they reach the next layer, they may produce a dull aching sensation if they are doing their job.
When I had CFS, the only positive help I got was by paying for acupuncture. I went there for specific symptoms, and had no real expectations, but a friend had just qualified as an acupuncturist, so I trusted her, and tried it. I was amazed, she used a combination of traditional Chinese acupuncture and another form which attacks symptoms directly. Apart from the more obvious physical symptoms, I was impressed that in a few minutes, she could change my pulse rate permanently because it was too slow. Even more amazing, my state of mind was at an all-time low because of my long illness, and she helped that enormously. Recently, my acupuncturist tried out a new gadget, passing electrical impulses through the needles she had put into my knees, and a problem I have had all my life seems to have disappeared! Half a century of pain and stiffness gone in half an hour! I have had to learn to walk differently. I have already mentioned my throat problem. Half a century of discomfort gone in half an hour.
I have been trying Catupuncture. I place a kitten on my bad knee, and his needle-like claws sink into my knee, causing such excruciating pain that I quite forget the original pain.
The things that I am sure acupuncture helps are amazing, but there are many other things that it seems to have improved as well. Beware of doctors who attend a 3-day course in acupuncture, the proper training takes 3 years. I was appalled that Dr Moseley from “Trust me I’m a doctor” was so dismissive about acupuncture when he hadn’t even got a condition to test it on.
Acupuncture treatment needs to be topped up regularly.
POSTERIOR VITREOUS DETACHMENT
The eye clinic at James Paget Hospital were very kind and helpful when I went to them with an eye problem. When we get older, a strip of material can detach itself from the vitreous layer in the back of the eyeball, and curl up, producing an image rather like an @ symbol. This can be larger, darker and clearer than a normal floater, and being attached to the retina, it makes unnerving, jerky movements every time the eyeball moves. Because it leaves a strip of the retina more exposed, another symptom is an arc of bright light when you blink, especially in low light conditions. You should get it checked, but there is usually nothing that needs to be done, it should fade and unravel, and your brain should also adjust to it.
It’s official – music is bad for me! Technically, “deep breathing” does not just mean taking in more air, it refers to using a deeper part of the lungs more efficiently, to take in more oxygen. This is done by breathing with the belly instead of the chest, the kind of thing that happens naturally when a person or an animal needs an urgent burst of air for sneezing or yawning. The lungs are very long, and stretch from the shoulders, right down past the ribs, but the top section is surrounded by bones, and unable to expand very much, so I cringe when I see so many singers raising their shoulders when they are asked to breathe in. Many actually pull their stomachs IN when they try to breathe, and a moment’s thought should show that this is ridiculous. Other people commonly say “breathe in” when they want to squeeze through a small space.
No!... Breathe OUT!
Proper professional singers can project without moving their shoulders at all. You only have to look on the internet to learn the many health benefits of diaphragmatic breathing, I’ve been practising it for half a century, but several singers have pointed out to me that exercising this muscle, causing your belly to expand by 4 or 5 inches, eventually leads to permanent expansion of the belly, not because of fat, but because the muscles become better at expanding than they are at contracting.
So many web pages, in the course of comparing fat and muscle, say that a pound of fat weighs the same as a pound of muscle. What a ridiculous statement! A pound of ANYTHING weighs the same as a pound of anything else!
Unfortunately, although many opera singers are fat in that area, I had found no hard evidence anywhere that my pot belly is caused by the technique, in fact there are many internet references which suggest that diaphragmatic breathing can actually REDUCE your belly! It seems that my muscles have become very good at expanding, but not so good at going back. In particular, nurses and other people have been puzzled by the fact that mine was so solid, like a football, but this suddenly changed recently. It seems that I now have a condition called DIASTASIS RECTI, in which the abdo muscles separate down the middle, so my 6-pack has now become 2 separate 3-packs. It is common in pregnant women. A particular symptom is that when the muscles are tensed, they form a ridge along the centre-line, not a look that appeals to me at all. The condition is exacerbated by lifting heavy weights (pianos) and by years of diaphragmatic breathing (for singing). Unfortunately, you can’t exercise to lose muscle.
ARE YOUR MEDICAL RECORDS CONFIDENTIAL?
Doctors’ surgeries across England are now required to supply patients’ personal and confidential medical information, on a regular and continuous basis, to the Health and Social Care Information Centre (HSCIC). The data upload commenced in March 2014 and all households should have received a leaflet misleading entitled “Better information means better care” through their letterbox about this. This programme is called care.data, and the information uploaded is used for purposes OTHER than your direct medical care (deviously referred to as “secondary uses”) so it has nothing to do with “better care”. Medical staff treating you in GP surgeries, hospitals, A&E and drop-in centres will not be able to use this database for anything helpful to you. However, the uploaded data is to be made available to organisations outside of the NHS, such as universities and commercial companies.
Details from your medical record will be extracted from the practice in a form that can identify you, and will include your NHS number, date of birth, postcode, gender and ethnicity, together with your medical diagnoses (including cancer and mental health), their complications, referrals to specialists, your prescriptions, your family history, details of your vaccinations and screening tests, your blood test results, your body mass index, and your smoking/alcohol habits. Under the Health and Social Care Act 2012, GP practices have no choice but to allow the HSCIC to extract this information. Once the data has been extracted, the GP practice is no longer the data controller for that information, and cannot control or protect in any way how that information is used, shared or who has access to it. Although GP practices cannot object to this information leaving the practice, individual patients and their families can instruct their practice to prohibit the transfer of their data...
YOU HAVE THE RIGHT TO OPT OUT!
If you do nothing, then your medical information will be extracted and uploaded to the HSCIC. See…
COLD LASER TREAMENT
Cold Laser Treatment is said to stimulate the body and help it heal itself by delivering controlled pulses of laser light. I have to say it just sounded like just another cranky quack idea when I first heard of it, but because of my skin problems, one injury remained open, and didn’t heal for THIRTY-SEVEN YEARS until a friend tried Cold Laser treatment on it. He had previously used the machine to shrink a benign tumour in his brain, keeping major surgery at bay for a long time.
Apparently, NHS hospitals have these amazing but expensive machines hidden away in cupboards because nobody knows how to operate them. I expect the drugs industry bought the cupboards for them!
If my eyes are subjected to too much direct sunlight, I sometimes suffer an ocular migraine, a type of visual disturbance also known as an aura, or more commonly “a visual”. A small area of flashing lights expands to form a crescent which obstructs most of the vision in one eye. In about 20 minutes, the crescent gradually moves across the field of vision until it disappears. Covering or closing the eye does not help, this is not something real I am seeing with my eye, it takes place in the brain. Confusingly, some websites refer to this condition as a Retonal Migraone, or a Scintillating Scotoma. For me, whatever you call it, it is a brief, painless but annoying distraction when I am trying to drive, or play piano, but for some people, it is the precursor to…
The term “migraine headache” is not appropriate. Migraine is NOT just a headache, it is an all-body, all-consuming illness, pain, vomiting, visual disturbances, balance problems and dizziness, confusion, lack of coordination, diarrhoea, bloating and digestive problems. The World Health Organisation now recognises it as THE THIRD MOST COMMON DISEASE. Apart from the physical effects, it’s like a temporary mental illness that prevents your brain functioning normally, and your stomach shuts down, so medications taken too late don’t get through. Some people with gluten intolerance suffer from migraines. Recent research with something known as CGRP sounds promising, let’s hope it succeeds.
FREQUENT CHRONIC MIGRAINES
For over 11 years, Beth’s life and health have been blighted by migraines of varying severity, but almost every day. We paid good money to go to the Migraine Clinic in London, their response was to say that “migraine doesn’t behave like this”. Another thoughtless specialist said “it’s only pain, it shouldn’t stop you working”! The Migraine Clinic’s own website talks about migraine being a headache! Oddly, her best help has come from the NHS “Headache Clinic” in London.
Pain killers only ease the pain aspect of the disease, they don’t stop her being ill, and nobody deals with the basic questions about why she has had to suffer like this for 11 years, or what can be done to remove the illness. She never knows what she will be like, or whether she will be able to do what she has planned to do on a given day. If she sleeps, she will almost certainly wake with some degree of migraine. If she stays awake all night, the migraine doesn’t come, but she is exhausted, this approach is not sustainable. Surely she is not the only person in the world suffering like this? We spend our lives analysing food and drink that may trigger it, but that doesn’t stop the illness. A specialist told us it is pointless trying to analyse it, but what else can we do? Having gone through the drugs cabinet, Beth has finally been given Botox treatment, 31 stinging injections on the head, neck and shoulders, to see if these help by deadening nerves. The idea is that although she may still suffer migraine symptoms, the pain should be removed. That is exactly what happened, her life improved quite dramatically, but botox must be topped up regularly every few months, and its effect eventually dwindles.
In the same way that botox started off as a cosmetic treatment, but was found to have beneficial effects for some migraine sufferers, there is also a particular type of ear piercing which may help. If you put your finger into the ear canal and push upwards, that is the area known as the DAITH. Having a daith piercing on the same side as the pain may reduce your migraine, but for most people, this means having both ears done. In theory, the combination of botox and daith piercing may help Beth reach a point where, when she has a migraine, she can trace it back to a particular trigger, such as drinking wine, or eating chocolate, rather than having some degree of migraine every time she wakes up.
Unfortunately, whereas botox is administered by professionals, piercings are often done by people who know very little, and one of Beth’s daith piercings was not done properly, it didn’t go through the cartilage, so she couldn’t reap the possible benefit of pain relief until she had waited months for it to heal, so she could get a new hole made in a different position. Meanwhile, she has started on a new drug to see if it helps.
Steroids have been described as miracle drugs, in spite of their disadvantages, such as suppressing the immune system. An interesting, unexpected side-effect of a persistent ear infection was that, having been put on a single week’s course of Prednisolone tablets, I found that all sorts of lingering aches, pains, fatigue, skin problems and minor ailments improved dramatically, and left me on an absolute physical and mental high, such as I could not recall having felt before. I am convinced that many of the little left-over effects of chronic fatigue disappeared in a fortnight. Will they return? It has been years. It might be worth asking your doctor about the possible advantages of trying a week’s course of steroids. The surprising side-effect was that because I felt so good, I wanted to get on with my life and work, but this increased my frustration because while I was ill for so long, life seems to have acquired so many new barriers, out of my control, that impede my progress. For example, the so-called “Live music” scene rarely involves musicians now. I also put on a stone almost immediately after the steroids, and struggled to get rid of it.
If you were a confident, capable tight-rope walker, then because you knew what you were doing, it wouldn’t matter how high you were… until you fell off. Most of us walk the tight-rope when we eat and drink all kinds of substances that we don’t realise are potential stomach irritants, and we survive without noticing any problems because nature has provided such a resilient lining in the stomach. However, if that lining becomes infected, damaged or inflamed (gastritis) your doctor will be telling you to avoid a long list of things you have had no trouble with before, like alcohol, fruit, juice, milk, coffee, tea, cola, chocolate, sweets, doughnuts, high salt foods like bacon, fried foods and cooking oils, cheese, onions, seasoned foods and curries, high-fat foods like chips and take-aways, as well as instant foods, processed foods, and canned foods.
The list seems endless, and you begin to wonder what you CAN eat or drink. It is reminiscent of my comments above about IBS. Stress and smoking are also irritants, but what people don’t realise is that all sorts of traumas to your body can cause a rise in acidity in the stomach, especially if you have had major surgery. Sadly, there is no way forward unless you adopt a bland, benign, boring diet for your food, avoid hidden ingredients, and mainly drink water. We could argue about whether the stuff that comes out of the tap is good or bad.
Antibiotics are increasingly accepted to be a major cause of fatigue, and I found this out to my cost just before the twin towers fell, when I had a near-fatal leg infection caused by an insect bite. There was no tunnel of light for me, just the video repeatedly running in my head of a trip down a dark, muddy whirlpool into the abyss. I received a double dose of intravenous antibiotics, and I cannot praise too highly the incredible NHS staff who dealt quickly, efficiently and caringly with this visible, traceable problem. Antibiotics saved my life, but wrecked my health for a while. They are said to kill off the “good bacteria” as well as the problem ones, so with hindsight, it’s important, during and after treatment, to use supplements like acidophilus that will help to replace the good bacteria, otherwise the bad ones like candida can flourish. Why not wash down your pills with a pro-biotic drink? But get advice to make sure it is a genuine one whose bacteria survive long enough to work in your body.
Next time you are looking out at a rainy day, watching the mud pour down the drains, remember that we recycle water, and that has its problems: household bleach is designed so that it quickly becomes benign as it is flushed away, but many other contaminants are not. It is common knowledge that any drugs we take into our bodies will show up in our urine, but have you ever thought about what happens after it goes down the toilet? Animals reared for slaughter are routinely dosed with antibiotics, so meat and poultry add to the problem: The contamination amazingly survives cooking, and passes on through our digestive system, spreading to our waste water, and thence to recycled tap water, which is now said to contain increasing amounts of hormones, antibiotics and other drugs. This may well be part of the reason why antibiotics are becoming less effective, so you must always filter the water because, apparently, domestic water filters remove more impurities than the industrial ones. To me, this suggests that the water companies are not doing their job. The problem is not helped by the fact that so many people consider it acceptable to flush old drugs down the toilet. Did you know that if you return unused drugs to the pharmacy, they have to scrap them in case they have been contaminated?
THE NEW BENEFIT ASSESSMENTS
When I was ill, I occasionally had to go for an assessment, to prove that I was still ill enough to qualify for sickness benefit. I soon learned to trust the fact that it was done by a doctor, who could see that it was a struggle for me just to attend, and understood completely that I was too ill to attempt to work. I am glad I don’t have to do it anymore, because recently, there has been a sinister change in these assessments, farmed out to ATOS, a foreign business firm, and employing a “Health Care Professional” who is not necessarily a proper, qualified doctor. Acting on instructions from the government, they tick boxes saying things like
“heard when his name was called”…….…..
“rose from the chair unaided”………….…...
“walked to my office unaided”………….…..
“had no difficulty completing the form”.……
“was able to raise his arms above his head”
Health problems can vary from day to day, but these people are obsessed with something called “a typical day”, and although the rules say that the HCP is not permitted to use the assessment day as a snapshot of your general health, THEY DO! In February 2104, figures showed that in the past year nearly 900,000 people had their benefits stopped, the highest figure for any 12-month period since jobseeker's allowance was introduced in 1996. In recent months, however, 58% of those who wanted to overturn DWP sanction decisions in independent tribunals have been successful, but they had to wait over a year for the tribunal, the stress and anxiety of which can have a terrible impact their health. In addition, the government plans to reject 5% of the people currently on Disability Living Allowance, and people who have repeatedly been told by the DSS that they are unemployable are now expected to get a job. The cost to the courts alone amounts over £475 million so far, and the government are blaming it on an increase in appeals, conveniently failing to say why that is happening. They argue that the system has weedled out many malingerers, but what of the impact on the lives of those who are genuinely ill? And what if you live on your own, are frail, with no support, and don’t have the confidence to deal with the appeal? The only good news is that once you reach the tribunal, after a year or more of stress and worry, you will be dealing with a judge and a REAL doctor, intelligent people who should be impartial, and probably don’t even approve of the system they have to monitor. ATOS have now given notice to quit before their contract expires, but who will replace them? Will it be better or worse?
By the way, don’t expect interest on your back-dated claim, that’s another way the government saves money.
When you are already stressed because you are travelling on the way to your assessment appointment, don’t be surprised if they phone you to cancel in the last hour. Of course, if you don’t have a mobile phone, it’s tough luck. Will you get your costs back?
Whenever the subject of chocolate comes up, it is important to realise that white chocolate, milk chocolate, and plain/dark chocolate are not just different colours of the same thing, they can have quite different effects on your body, and some people are allergic to just one type. Cadburys were unable to explain this, and although the staff at the Chocolate Museum in Bruges told us the ingredients, these did not explain the differences in effect. Several recent surveys suggest that a small amount of dark chocolate every day helps to avoid heart disease, or reduce blood pressure, and it is thought that about 45 grams (half a bar?) of dark chocolate a day, high in flavonoids, may also help to control serotonin levels.
Warning! Kit-Kat is now available in dark chocolate. Who needs diets anyway?
People are not simple, our bodies do not conform to simple rules, and we all react differently to foods. Nowhere is this more obvious than in the appalling lack of help with obesity. People shouldn’t allow themselves to become twenty or thirty stone, but once they are there, they are stuck. To some people, it seems to be an astounding revelation worthy of a television programme that if we eat smaller portions we might lose weight. It seems reasonable to me that if my stomach is the size of my fist, I shouldn’t eat more than a fistful at a sitting.
A calorie is a tiny unit of energy, so for practical purposes, kilo-calories (kCal) are usually quoted, although it is not always clear that these are thousands of calories, so if your meal seems to have 400 calories, it is actually FOUR HUNDRED THOUSAND. An alleged dietician gave me a simple rule about weight and calories, and the THEORY is that if I want my ideal weight to be 75kg, multiplying that figure by 20 means that I need to consume 1500 kcals per day, and my weight will gradually work towards my goal. In reality, it does nothing of the kind, and I have always said that there is no correlation between my weight and food intake. I can go without food for 2 days, or eat far more than usual, or eat junk for days, it has no effect on my weight. If I do put on a few pounds, they go usually DOWN again within a week, my body seems to have its own idea about what weight I should be. I went to the dietician to try to solve this riddle, but he sees what I am doing, understands my logic, and has no idea why it doesn’t work, so his only option is to assume that I may be “mistaken” – (lying). I am said to be eating less than 75% of the calories I would need if I wanted to sustain my weight… but it IS sustaining. He suggested walking for half an hour a day. I CAN WALK FOR HOURS!
Someone suggested that I should try the “Five and two” diet, so I asked if that meant fasting for 2 days a week. No, the “low-calorie” suggestion for those 2 days is MORE food than I normally eat!
I find that on a long, busy day of physical activity, I can lose half a pound, but on a day of purely mental activity such as music and computing, I can GAIN half a pound. This is staggering, what I do today can affect tomorrow’s weight by a WHOLE POUND!
Perhaps I could lose 365 pounds in a year? Unlikely!
Have you ever started one of those seemingly-endless videos that warn you about 5 foods that will trigger fat storing? It would be nice if they STARTED by telling you what they are, it would have saved me from a mind-numbing half-hour of waffle, because I don’t use concentrated fruit juice, margarine, whole wheat bread, soy or GM corn, so the whole thing was a waste of my time.
It is horrifying to imagine that Europe is considering legislation for obesity to be treated as a disability, it will bankrupt this country, it already costs a million pounds an hour!! Imagine, you have gone through all kinds of problems trying to gain official acceptance of an illness, and then someone is instantly accepted purely on the basis of what the scales say. You could just jump the queues by getting fat! The majority of morbidly obese people only have themselves to blame. Removing pains has allowed me to live a much more active life, and conversely, losing some weight has relieved some of the pains, but it is a struggle, and considering how they go on about obesity, the NHS are not helpful. Incredibly, I lost nearly 2 stones in 2 months, but the bad news is that this involved many long hours of heavy manual labour, rearranging our collection of pianos. During that period, I ate and drank normally, drank Coke when I needed it, occasional chips, rarely fast food, ice-cream at bedtime.
Someone said it was a waste of energy moving pianos around, and I should go to the gym instead. Am I missing something? In what way is going to the gym more useful than leading an active life?
It’s worrying that the new tax on sugary drinks will encourage more people to use artificial sweeteners. Do you use diet drinks to try to lose weight? They may contain 'ASPARTAME', which is also marketed as 'Nutra Sweet', 'Equal', or 'Spoonful'. Too much of this can mimic the symptoms of multiple sclerosis, dementia and systemic lupus, as well as causing skin problems. Dentists recommend using sugar-free chewing gum, but it contains aspartame. Someone I know has been told for years by her doctor that she may have lupus, although tests have not been able to confirm it. Recently, she was unable to buy her favourite lemonade, and accidentally bought one without aspartame. Her symptoms began to abate within days. Now the panic about sugar has led to massive over-use of artificial sweeteners such as aspartame, with no though about their long-term effects. NHS advice about certain conditions indicates that a third of patients suffer symptoms when they use aspartame. Why is it allowed in drinks? I don’t mind having less sugar, but I object to using these dangerous ingredients. For more information, see
I CAN SEE CLEARLY NOW THE PAIN HAS GONE
Pain is your body’s natural way of letting you know something is wrong, and there always the risk that if you overdo painkillers, you may over-use your body, and damage the problem area. As you go through life, you will pick up pains in various parts of your body. Although they are not usually life-threatening, each one has the potential to restrict some activities in your life, but some days, they all seem to be ganging up on you, and you may find yourself saying things like…
I can't sleep because my neck hurts
I can't drive far because my toe hurts
I can't walk far because my knees hurt
I can't lift much because my groin hurts
I can't sit for long because my back hurts
I can't stand for long because my feet hurt
I can't bend down because my ankles hurt
I can’t play guitar because my thumb hurts
I can’t stand on ladders because my foot hurts
You can so easily get to a point where simple pain frustrates everything you want to achieve in your life, it makes you feel older than you are, and it can lead to inactivity, obesity and depression. Ask your doctor for a short course of strong pain-killers, just to discover what your life would be like without pain. I didn’t want to take Tramulief every day and have it in my system all the time, I just wanted to take a pill when I had a pain, but a pharmacist took time to explain to me that most pain-killers such as Paracetamol or Ibuprofen are fairly mild, so you can easily end up taking too many, and suffer harmful side effects. A positive side to all this is that when you are in pain, it forces you to remove from your life anything that is adding to your stress levels, and when the pain is gone, life is better than it was before!
Take kindly the counsel of the years, gracefully surrendering the things of youth.
I suddenly started coming across the term “rheumatism”, and didn’t know what it meant. Having searched for a clear definition, it seems that there isn’t one, it refers vaguely to hundreds of different conditions where there is pain in the joints.
“Doctor, doctor, I have pain in my joints.”
“Ah! I know what that is, it’s rheumatism!”
“What does that mean?”
“It means pain in the joints!”
Some outrageous claims are being made for these cannabis-based derivatives, saying that 2 drops a day can cure all sorts of major conditions. I would like to see the evidence, but it certainly has helped my knee pain and back pain. However, that’s not 2 drops, it’s nearer the recommended maximum 15 drops a day. Comparable claims are also made for catnip! CBD is not psychotropic, so it is available from health food shops. It’s odd that substances that would be illegal for humans can be used on animals, yet the people whose only life-line is real cannabis, like Alfie, who has 30 seizures a day, are breaking the law, and liable to be arrested.
A few years ago, I reached a point where if I stood for 2 or 3 hours at a gig, my feet became very painful. I mentioned this “foot problem” to a retired beat policeman, and he asked if perhaps it was a SHOE problem. This struck a chord with me, because I have always complained that shoes are not foot-shaped, and my toes like to spread. On his recommendation, I tried wearing Crocs, the pain went away, and I never wear anything else on my feet now, although I unfortunately prefer the expensive soft, heavy ones. Please be aware that wearing looser, wider shoes allows more movement for your toes, so you may get hard skin on them.
THE LANGUAGE OF PAIN
I used to know a lady who always pronounced her sneezes with a perfect "atishoo" but most of us are not thinking about the sounds we make when we sneeze, cough or express pain, and I am reminded of Billy Connolly, who said he had reached an age where he produces so many spontaneous noises, he has to try to work them into the conversation. I suffer from a condition known as glossolalia, although most people would not think of it as a "condition", and many Christians long to be able to attain a state where their mouths produce utterances which resemble words, but not in any language we know. This "speaking in tongues" is easier for artistic, creative people to produce, and is said by some to be the purest of languages, given by God. There are claims that whenever somebody does it, there will always be someone in the room who can understand what is being said. Having heard a few recordings of preachers and congregations doing it, I find it difficult to detect any structure to suggest a real language. I would guess that since I am not a Christian, some of them will suspect that my babbling is coming from Satan.
Back in the seventies, psychologists were finding ways to cause people to voice things from their sub-co/nscious minds, and I decided to try just writing, with no subject matter in mind, and see what happened. I was hoping it might reveal something interesting about my sub-conscious. There was a certain control from my conscious mind wanting to produce proper sentences, but the actual content was meaningless. Have you ever listened to a long speech or sermon that was so boring because you didn't have a clue what they were talking about? Try talking for a few minutes, in proper sentences, but with no subject matter in mind, it's not as easy as it sounds.
I also tried applying the idea to playing piano, and a few years ago, I made some improvised recordings which still fascinate me, the only rule was that if I could hear where the music was heading, I took it somewhere else!
My dad had brought me up imitating the sounds around me, including animals, and I have developed the habit of repeating back to them the sounds they make. This got me in trouble at a zoo once, when a monkey made a ticking noise at me. I repeated it back to him, thinking that he might enjoy the communication, but he was not amused, he went ape! When I suffered a long major illness, and spent most of my time alone, with only a dog and cat for company, sometimes Harry the dog would throw himself on the floor in a heap, and give a big sigh, then say "uffle". I repeated this back to him, and the response was astounding, he seemed impressed, as if I had made a major breakthrough in man/dog communication, and he suddenly had to be very close to me. Both he and Muffin the cat made various noises, although cats have a much wider vocabulary of sounds. I used to come home to find Muffin saying “aaallo” to me, and if he was hungry he would say “meal”. I found myself regularly "talking" to them both in these abstract sounds, and even making some of my own. Now, at the age of 71, suffering aches and pains, I am embarrassed to find myself babbling short phrases when something hurts, such as…
Arfl pom up
Bawdy chew num
Bench iboo fomp
Bo dunch kalim
Bo dinj if woe
Pa tujja kondi
Pim ponga dunga loop
I only show you these to demonstrate that there doesn't seem to be any language structure, and I suspect that sub-consciously, I am actually trying to avoid real words. I was pleased to hear that actor Adam Thomas, who plays Adam in Emmerdale, also babbles in a similar way when he is stressed or excited, so at least I am not the only one. Any others out there? And then there’s…
A chiropractor works only by examining and manipulating with the hands, no drugs or machines, but achieves amazing things. Beth was investigating the possibility that her migraines were caused by sinus problems. We waited weeks to see an ENT specialist, who spent 3 seconds looking up her nose, then proclaimed that there was nothing wrong with her sinuses. Soon after, a chiropractor said (without prompting) that she had felt a blockage in the sinus. Not only that, she drained it! If you can identify the locations of particular, individual pains, a chiropractor may be able to help you remove some of them purely by manipulation.
THE PEOPLE WHO SAY “KNEE”
(A Monty Python reference.)
The same chiropractor pointed out (without prompting) that my right kneecap was “not tracking properly”. When I was a child, my Dad and my Mum’s brother suffered similar problems with their knees, which would lock painfully, and seemed to dislocate, so I was not surprised when the same things happened to me, which I believe were subluxations. I quickly learned not to kneel down and twist sideways. Many of Dad’s family suffer different problems with their knees. Throughout my life, doctors have told me there was nothing wrong with my knee, but then, they don’t have to live with its pain every day. Recently, my acupuncturist treated my knee with electrical impulses, and the pain and stiffness I have suffered for half a century went away in half an hour. The odd postscript to this is that for years, I have been subconsciously training my legs to walk without much use of the knees, and now I have to learn to walk differently. The pain is all but gone, but I realise how weak my knees are, so I have to build up the muscles.
When my generation were growing up in the fifties, we were constantly nagged to “stand properly” and “walk properly” and our parents took control to such an extent that many people of my generation conform to an upright posture and certain way of walking. Some people will argue that this exacerbated my knee problem, and my daughter’s generation were told by doctors that it is wrong to try to change the way a child walks naturally. Now, between people only 2 generations apart, the difference is enormous, and I see so many young people standing in a way that will damage their spine, bending their neck down so they have to tip their head back like a vulture, sloping their shoulders, contorting their spine, and walking with their legs going off at all kinds of angles. There is absolutely no doubt that all this can be damaging to their health in later life.
It seems to me that something has gone wrong. We don’t want to let people that we love die, so we plead with doctors to do absolutely ANYTHING that will help our loved ones survive. That is perfectly understandable, nobody wants to lose someone they love, but sometimes, they can end up “cured of what they’re suffering from, and suffering from the cure”. More to the point, someone who (in the past) would have died naturally from an hereditary condition can often be helped to survive, and go forth and multiply that condition into future generations. Since we can’t go around sterilising people, and I can’t really settle to the idea of messing with our DNA, I don’t know how we stop these illnesses proliferating, but it seems to me that every successive generation is being plagued by more and more of these “rare” conditions, which wreck their lives. Nature had a way of dealing with it, however harsh it may have seemed, but we interfered with the system, so we pay the price.
MY SKIN PROBLEMS
I overheard a conversation in a chemist’s shop, a lady wanted advice about her allergy to soaps. The assistant said she should stick to “safe” soaps like Dove or Simple, and avoid perfumed soaps such as Imperial Leather. We are all individuals, and for many years, Imperial Leather was the only one that I could feel safe with, and Dove and Simple are two of the worst for my skin. I also find that soaking in a bath drives my skin crazy, so I prefer to shower, but I keep the plug in, so that my feet get a soak.
I remember my Dad telling the doctor his skin was inflamed and he didn’t know what was causing it, the doctor said it was “dermatitis”. (This, of course, is a vague general term which means “inflammation of the skin”.)
“Doctor, doctor, my skin is inflamed!”
“Ah! I know what that is, it’s dermatitis!”
“What does that mean?”
“It means inflammation of the skin!”
I have had just as little help with my inherited skin problems, doctors can’t even agree on a name for them. In 1975, I was going up some steps to a stage, and the steps fell towards me, damaging my right shin. This injury remained open and did not heal for 37 years, but doctors kept telling me it wasn’t anything to worry about. When I nearly died of cellulitis in that leg, I demanded to know if it was connected with the old injury. Only then did a scan reveal that my lymph gland has been damaged for years, and doesn’t work, so I have been warned by several doctors that any problems in that area have to be treated as urgent. Following up on one of these little panics, I was told by an A&E doctor that it didn’t matter, because if one lymph gland failed, another would take over. I don’t know how many lymph glands he has in his right leg, I have none.
When I had my office in an attic, every time I went down a sharp turn in the steep stairs, my left calf caught on the carpet, and I developed a sort of carpet burn, which one doctor said was psoriasis. The definition of this was simply that it seemed to respond to psoriasis cream, but this was not a proper solution. The only way to get temporary relief from the itching was to strip off the loose, rough, scaly skin until it was smooth, but although this process is quite satisfying in the short term, it makes it even more sore. As an alternative, I wondered if I could fill in the cracks to make it smooth, like putting wood filler on rough timber, so it wouldn’t be irritated by my clothes. I tried rubbing a wet bar of soap on there, which filled the cracks, and dried to a smooth surface. I was surprised at the success of this, because soap is often a cause of trouble for my skin, but it worked, and a patch as big as my hand has reduced to a couple of small spots. Recently, I gave up processed meats for a month, and my skin improved.
Here’s something a bit weird. In the eighties, I spent a lot of my time doing piano repairs, and quite often got Evo-Stik wood glue on my fingers. The simplest thing to do was to wipe it onto the backs of my hands. At the time, I had a major skin problem on my left knuckles, and I quickly noticed that if I had any spots or injuries, when the glue dried, it formed a plastic skin which kept the skin clean. Not only that, when it was peeled off, it seemed to pull dirt and dead skin off with it, making that area look much better. Recently, I decided that as the glue hadn’t poisoned me, I would try it on the bad skin on my leg. The effect was interesting, whether I did a small test area, or covered the whole problem. While the glue was there, the rough, scaly skin didn’t grow, and when I peeled the glue off after some hours, the skin looked a lot better. Sadly, the effect did not last, and as soon as the skin was uncovered, it began to have problems again.
A few years ago, a free-thinking locum named Doctor Shaik was only in my life for ten minutes, but he changed that life drastically by spending time carefully explaining in detail that my rashes broke out because I was allergic to shampoo, and they failed to heal because my skin was not producing enough natural oils. His advice was to use NO shampoo or soap on my hair, and simply rinse it in water every day, so my hair went a bit “Rock’n’Roll”. I was horrified, but desperate enough to try it, and it worked. The second stage was to take oil supplements to make my skin a little more oily. Until I did this, my feet had never sweated! Oh, what bliss to get some relief from the constant itching! I have now found a shower gel that does not affect me, so I can have non-greasy hair again!
A product that I have found very effective is DermaCool Plus, a form of aqueous cream with menthol. If you apply it generously to those hot, itchy places, and don’t rub it in, the cooling effect can still be felt for up to an hour, and whether or not it is improving your skin, it is very reassuring to feel some effect from it.
I am always puzzled by the total lack of symmetry in my skin problems. My left leg has a different condition to my right, which was not at all happy with the soap treatment. The outside of my left arm occasionally breaks out in bloody spots, while the inside of my right arm breaks out in itchy pimples at the same time. The skin problem on each arm and each leg is different, and responds differently to various attempts at treatment. Some people find that E45 cures all, but there is nothing that works equally on these 4 areas of my skin.
In the course of endlessly wrestling with the electrical interference in my music room, I have discovered that each arm is electrically different too! Although interference noise is affected by my body moving near the electronics, and especially touching it, one arm has a quite different effect to the other.
The National Health Service has been promoting two particular health ideas in recent times, with posters around the surgeries and hospitals. One is the idea of “five a day” portions or handfuls of fruit and vegetables, the other is the “eatwell plate”, which acts like a pie chart, attempting to demonstrate the requirements for a balanced diet. Unfortunately, if you put the two ideas together, there is a LARGE problem: At the top left, you will see the five-a-day fruit and veg, whilst on the right, you have to balance that with 5 handfuls of carbohydrates. Below, on the same scale, 2 handfuls of meat, fish, eggs or beans, and 2 handfuls of dairy foods. Finally, a handful of high-fat or high-sugar items. I am already fighting to lose weight, and if I ate this much food in a day, I would soon be huge! I tried for a while to start my day by eating an apple, banana and pear, and make it a rule not to eat anything else until I had them, but I found it almost impossible. Now, the goalposts have been moved, and we are told to eat SEVEN portions of fruit and veg per day! Without donations, I will be fine, but PianoHistory.Info may not survive. If every visitor to this site made a donation, we would be able to improve our displays and facilities in our museum building, and improve facilities for research within our own archives.
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