HEALTH
MATTERS
(Updated June
2026)
Oh! Oh! Candida!
Following
a sever bout of glandular fever in 1990, I suffered from Chronic
Fatigue Syndrome and Irritable Bowel Syndrome. Doctors wrongly diagnosed this as M.E. (Myalgic Encephalomyelitis) and they have no treatment for
this, so I lost my house, my car and my savings. I was left to rot for 14 years until someone
who was not a doctor said that the combination of those two symptoms suggested
that I was suffering from candidiasis.
Candida is a fungus that normally lives in the gut, but an overgrowth
can spread through the intestines, oesophagus, throat and sinuses causing
fatigue and pain. The solution is an
exclusion diet, easy to find online, and I recovered within a few weeks.
LIFE-SAVER
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. In 2001, when I nearly died from cellulitis,
in the week when the twin towers fell, the doctors and nurses who saved my life
were wonderful, I had hardly arrived in A&E when they were pumping medicine
into me,
Yes,
they saved my life, but I might not have been in hospital at all if the GP I
had at the time had made an effort to come out and help me, instead of leaving
me for days. Over the years of my life,
doctors have not helped me at all with the everyday problems that make my life
difficult, uncomfortable, or painful, crippling dry throats, the painful knee problem
that sometimes drops me on the floor, the skin that constantly itches, and
fails to heal, the throat that makes it difficult for me to earn money by
singing or giving history lectures. 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. 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 other people too.
SKIN ALLERGY
I
was in a pharmacy recently, and a lady was asking about skin allergy. The assistant said she should avoid soaps
like Imperial Leather, and only use things like Simple or Pure. For my skin, these are the worst soaps, and
Imperial Leather is one of the few I can trust.
When my skin is injured, it heals very well, and quite quickly, but when
spots erupt from inside the skin, it is a very different story. Over the years, any warm clothing on my arms
causes the skin to break out in masses of spots, sometimes 30 on each arm. On one occasion I had lots of white spots on
the inside of my right arm, and they itched terribly. On the outside of my left arm, I had a
similar number of itchy red spots, but if I scratched them
they bled badly. I have made amazing
progress with the skin on my arms in the past couple of years: I am allergic to most soaps, shampoos and
shaving products, so I have completely avoided them, and every day I scrub my
skin with water and brushes. I keep my
arms bare for most of the year, and any vests, pullovers or jackets have to be
armless. Even the warmth of wearing a
T-shirt leads to spots in the shoulder areas, but sunshine doesn’t seem to be a
problem. Similarly, my legs will break
out in spots if they are too warm, so I can’t wear long underwear, long socks
or even thick socks. I can’t wear a knee
support because it gets too hot, and breaks out in more spots. When I was a child, my mother said “it’ll
never get better if you pick it” but the opposite is true. The spots don’t form normal scabs, the are
like tiny keloids, hard prickly skin that catches on my clothes and causes
irritation and soreness. Seven months
ago, a pair of spots arrived, almost touching each other, and I have nearly
managed to remove them. Imagine
multiplying that by fifty or sixty. I
can’t find any tools that remove the hard skin, and although salicylic acid is
supposed to remove hard skin, I haven’t found a product to do it.
DRY
THROATS
I
often have such a bad dry throat that I find it difficult to speak or sing, 2
things I need to do often. A mouthful of
whisky fixes it instantly when it keeps me awake, but I can’t drink whisky all
day. A friend was delivering one of his
regular sermons on the evils of fizzy drinks, and then drifted off to say that
he suffered from terrible dry throats that made it difficult to speak, and no
amount of water, or fluids of any kind seemed to help. I pointed out that I had been saying the same
to him for years, and the only thing that helps is Coca-Cola. Not water, Coke Light, Pepsi, Diet Coke,
cheap imitations, or indeed any other fizzy drinks, sweet drinks, caffeine
drinks, hot drinks or fruit drinks, just the normal sugary Coke. A doctor who had a bottle of Coke on his desk
said “What sugar? Coke contains glucose,
which stimulates the production of mucus”.
I have certainly become aware that the dry throat (perhaps soft palette)
coincides with dryness in the nasal cavity.
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. Did you know that Coke contains
less sugar than some “health drinks”? Incidentally, I gave up Coke for two months,
I didn’t lose an ounce, I just suffered terribly with my throat. If doctors want me to stop drinking it, all
they have to do is fix my throat. Any
offers?
One
possible cause is that I used to drink my tea very hot. Having picked up a cup by its handle because
it is too hot for your hand, do you then pour it into your mouth? Madness!!
Then, a strange instinct makes you swallow it to get it out of your
mouth, so you scald your throat and your oesophagus. It may be a minor scald, but it won’t have
healed by the time you do it again.
Don’t use the handle, and if the cup is too hot to hold, the drink is
too hot to be in your mouth!
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.
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? I often have nasal
congestion, so perhaps that connects with the throat?
THE
PEOPLE WHO SAY “KNEE”
(A Monty Python reference.)
A
chiropractor pointed out (without prompting) that my right kneecap was “not
tracking properly”. He suggested simple
exercises but they didn’t help. 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 thing happened to me. I quickly learned not to kneel down and twist
sideways. At infant school, I was one of
the best at fast sprints and long jump, but children of that age should never
subject their knees to that kind of strain.
A child’s knee joints are not properly formed until about the age of
ten. By the time I reached junior school
I was unable to cope with any sports involving running, jumping or
kicking. 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.
Going
upstairs or uphill causes pain, but going downstairs or
downhill risks the knee collapsing and dropping me on the floor. Lots of old people suffer major injuries from
falls like this, and I was quite phobic when I briefly lived in a house with a
long, straight staircase. The first time
I went to Lincoln, I was impressed that I got all the way up Steep Hill, but
coming down again was a different story.
My knee kept collapsing and I had to walk down very slowly. Once again, it is something that endless
doctors have looked at, and never diagnosed the problem or provided any cure,
or even pain relief. I am told it is
subluxation – the knee slips out of joint and then goes back in place, leaving
no detectable clue that anything is wrong, just twenty minutes of excruciating
pain.
WHO IS
NORM ANYWAY?
They're
everywhere, 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.
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!
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 be cured easily by exercises. 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.
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. I watched with interest the TV programmes
about the Spekemans, who seem to have an incredible
knack of helping people with all kinds of phobias. Part of that is about…
HABITS
& 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. 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. None
of the other things improved my life but I going 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.
MYSTERY
ILLNESSES
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 picture 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. A friend
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.”
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?
I wonder
if I could do it for animals, I haven’t had the opportunity.
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 in January. This
programme is called care.data, and the information
uploaded will be 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. However, the uploaded data is
likely 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…
EHLERS-DANLOS
SYNDROME
At
least five 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…
Hypermobility
Easy Bruising
Chronic Fatigue
Bladder Problems
Vitamin D deficiency
Muscle & Joint
Pains
Autonomic Problems
Immunity deficiencies
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
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!
FREQUENT
CHRONIC MIGRAINES
For
8 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 from working”! The Migraine Clinic’s
own website talks about migraine being a headache!
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. Apart from the physical effects, it’s like
a temporary mental illness that prevents your brain functioning normally.
Pain
killers only ease the pain, they don’t stop her being ill, and nobody deals
with the basic questions about why she has had to suffer like this for 8 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 a 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. Having found the points that fix
the pain, the doctor forgot it had even happened, made no record of the
procedure, claimed Beth had got it wrong, and decided to change to different
points, which are not nearly as effective!
GLANDULAR
FEVER
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.
There are other reports of viral meningitis leading to M.E.. 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!
My
GP woke me early one morning to take me to hospital, and although I should have
been impressed with him, I just wondered what he knew that I didn’t! I had blood tests, and the specialist came
back smiling, and 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 rest until you are fully recovered, otherwise
the consequences can be much worse…
ME? - M.E.
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. I never recovered 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 go 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.
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.
“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
was also painful. 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.
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.!
M.E. is a
real, recognised, physical disease of the brain,
not a
mental or psychological condition of the mind.
Its
typical beginnings are a combination of 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
the NHS what it 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 CFS 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.
CHRONIC
FATIGUE SYNDROME
In
the early stages, the illness 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 M.E. can be treated purely as a psychological disorder
ignores the proven physical, chemical, and medical aspects of the illness.
All
this pain and fatigue 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, not because I was lost, but because I thought I was
losing my mind. It has left me with a greater understanding of what it must be like to
suffer dementia, and I am much more tolerant of dithery old people.
I tried being
old, but I couldn’t get on with it.
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 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 one could choose not to think!
Many
sufferers seem to have experienced agoraphobia to some degree. Despite the cute 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.
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 situations 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 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 caused by
M.E., 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?
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.”
Richard
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.
Chronic
fatigue is on the increase, hundreds of new cases are reported each year in
East Anglia alone, and it has been estimated that there are now over a quarter
of a million sufferers in the UK, and the cost to the nation is 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 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. Recent reports say that eating processed meat
every day can cause pancreatic cancer, but which processes do they mean?
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 from 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, with real physical symptoms 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. Collecting information and
pictures on a favourite subject doesn’t have to cost you anything at all, but
remember that a laptop 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.
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. Whereas there is no
test for IBS, you can have a blood test for coeliac disease.
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. 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.
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, never get indigestion, and although I eat
almost the same food as before, I am gradually losing a little weight.
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 defineable,
but avoid those sauces, relish, coleslaw, mayonnaise, etc.. Sometimes, my worst enemy is white
bread. On occasions when I am breaking
my usual diet on holiday, or eating out, I become aware that my bowel problem
is gradually improving.
Did
you know that cooking fruit and vegetables reduces the amount
of vitamins, fibre, minerals, and enzymes?
Try to eat them raw. 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 has a very bad effect on IBS sufferers.
STEROIDS
Steroids
have been described as miracle drugs, and 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 cannot recall in
years. 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.
STOMACH
IRRITANTS
If
you were a confident, capable tight-rope walker, then because you know what you
are 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 potentially stomach
irritants, and we survive without noticing any problems because of the amazing
way that nature has provided such a resilient lining in the stomach. However, if that lining becomes infected 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 and caffeine drinks, chocolate, sweets, doughnuts, high salt foods
like bacon, fried foods and cooking oils, cheese, onion rings, seasoned foods
and curries, high-fat foods like chips and takeaways, as well as instant foods,
processed foods, and canned foods.
The
list seems endless, and you begin to wonder what you CAN eat. 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 diet for your food, avoid hidden
ingredients, and mainly drink water.
CANDIDIASIS
In
the absence of professional help, 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
Candida
Albicans
(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 travels not only through the small intestine but beyond the
stomach to the throat, tongue, nose, and sinuses. 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 on 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
in the UK) 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 more-or-less went away!
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 had 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.
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 seems to be improving
gradually. 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.
ANTIBIOTICS
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 repeated video 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?
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, spreads 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.
HYDRATION
A
lot of aches and pains are aggravated by shortage of fluids, which can cause a
chest pain rather like heartburn, and may even lead to hallucinations. Many sources now recommend taking two litres
of water a day, in addition to your normal drinks. Another rule of thumb is that if your urine
is coloured or smelly, you should double your fluid intake. Some people say that tea and coffee, despite
being made with water, can increase dehydration. 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. Hydration
is not just about water, most drinks 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.
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 again.
Don’t wait until you
are thirsty to drink!
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, now
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
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.
BIORHYTHMS
Everyone
varies in the way they feel from day to day, but this is taken to an extreme
with CFS, and it was difficult sometimes to know if I had ‘flu’, or just a bad
day. The way to achieve a better
understanding of this frustrating fluctuation in an 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.
CHOCOLATE?
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.
WEIGHT
LOSS
There
is 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 calories 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, it has no effect. I went to a 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. I am said to be eating
less than 75% of the calories I would need if I wanted to sustain my
weight.
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!
Have
you ever started one of those seemingly-endless videos that warns 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. Imagine, you have gone through all kinds of
problems trying to gain official acceptance of your 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. Incredibly, I lost nearly 2 stones in 2
months. 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 the room,
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?
DIET
DRINKS
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. 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. For
more information, see
http://articles.mercola.com/sites/articles/archive/2011/11/06/aspartame-most-dangerous-substance-added-to-food.aspx
I CAN SEE
CLEARLY NOW THE PAIN HAS GONE
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. 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’s a bit like saying “pain in the joints? That’s rheumatism” when
nobody knows what it really is.
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. 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.
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. The things that I am sure acupuncture helped
are amazing, but there are many other things that seem to have improved as
well. Beware of doctors who attend a 3-day course in acupuncture, the proper
training takes 3 years.
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.
POSTURE
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 a particular posture and
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, sloping their shoulders, contorting their spine,
and walking with their legs going off at all kinds of angles. There is absolutely no doubt that this can be
damaging to their health in later life.
HEREDITARY
CONDITIONS
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.
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. For many years,
Imperial Leather was the only one that I could feel safe with, and Dove and
Simple are 2 of the worst for my skin, they drive it crazy!
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”.) 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 I find out 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.
When
I had my office in an attic, every time I went down 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 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. 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, provided I keep
treating it. It is not a cure.
A
few years ago, a locum doctor changed my life by spending ten minutes 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. 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!
EAT WELL?
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 the
Piano History Centre may not survive. If
every visitor to this site donated just one pound, we would have a proper
museum building, and much-improved facilities for research within our own
archives.
Panio paino
pisno pniao pianogen