How to deal with a person with M.E
Reiki, which is another way of reducing stress
M.E. is an illness. M.E. stands for Myalgic Encephalomyelitis - which is a bit of a mouthful, but basically means muscle ("myalgic") and head ("encephalitic") symptoms.
M.E. is also known as Post-Viral Fatigue Syndrome (PVFS), because it often follows on from a viral infection.
The disease is known by other names elsewhere
in the world; in the US, for instance, it's called Chronic Fatigue and Immune
Dysfunction Syndrome (CFIDS).
Constantly be cautious, emotional and physical stress
is detrimental to your health.
Often, M.E. will start after an ordinary viral infection - flu', chicken pox, even a cold.
It is possible for an apparently
healthy person to come down with a viral infection, and develop full-blown M.E.
immediately.
In other cases, there may be no obvious viral "trigger" at all, and the person may "slide" into the illness over a period of months or even years. Older people tend to develop M.E. in this way.
As its name suggests, M.E. mainly affects the muscles and the head:
Ø Muscle symptoms include severe fatigue on exercise, muscle pain and spasms.
Ø It's important to appreciate that the kind of fatigue experienced by many M.E. sufferers is quite different from the straightforward "tiredness" most normal people have experienced.
Ø M.E. sufferers have likened the fatigue to "having their plug pulled out", or being totally drained of energy. And unlike in many other illnesses, exercise may make things worse.
Ø Any physical activity - even walking up or down stairs - may put some M.E. sufferers in bed for days or weeks, and even cause a major relapse.
Ø Sometimes, you will see M.E.
sufferers apparently able to do quite normal things physically, yet complaining
of terrible fatigue and muscle problems. What you haven't seen is the price
they pay afterwards for their physical exertion - perhaps days in bed
recovering.
Ø Some sufferers have learnt how to "save up" energy to enable them to do things, know exactly how much they can do - and at what price they are likely to have to pay afterwards.
Ø It is as
though their muscles have a limited energy supply. When this runs out, the
muscles stop functioning and need time to recharge.
The head symptoms experienced by M.E. sufferers include:
Ø Headaches, dizziness, "swimmy" feelings, and perhaps the most difficult to handle, loss of concentration and short-term memory.
Ø M.E. sufferers will often forget things you have just told them, and will find it hard to take in new information - especially if it's complicated. These problems will tend to be worse the more exhausted the sufferer is, and mental exertion as well as physical may be exhausting for people with M.E.
These are not the only symptoms experienced in M.E:
Ø Sufferers will often feel "ill all over", and experience many flu'-like symptoms; nausea, shivering, fever, and generally over-react to heat and cold. Some unfortunate sufferers may be in unremitting pain.
Ø Digestive problems are common; constipation or diarrhoea, gas bloating and bowel pain.
Ø Depression and emotional problems are often a part of M.E, but it is important to realise that these are a symptom of the illness, and not its cause. Some sufferers are very emotionally volatile and unpredictable - they may get angry or depressed for no apparent reason, or even cry at the slightest upset. This may be due to the illness affecting the nervous system.
Beware you could have a relapse.
It is not exactly known what causes M.E, but research has revealed a number of abnormalities in M.E. sufferers.
Findings include:
Evidence of persisting viral infection, abnormalities in muscle structure and function, and evidence of damage to nervous tissue.
M.E. has been around - under different names - for at least a century.
It was probably seen before then, but perhaps in far fewer people.
So it isn't a "new" disease - but rather a newly recognised disease - and probably much more common.
There are a number of reasons for this:
Ø There are such a variety of symptoms involved in M.E, that it is a difficult disease to define clearly and doctors don't like illnesses that won't fit into neat diagnosis pigeonholes.
Ø There are no clear tests to diagnose M.E. - it has to be diagnosed by doctors using "clinical judgement" - i.e. listening to the patient's description of their symptoms. Doctors often seem unwilling - or unable - to do this.
Ø There is very little satisfactory "orthodox" medical treatment for M.E.
Ø Some of the symptoms of M.E. overlap with illnesses that doctor’s label as "psychiatric" disorders, so M.E. has tended to be lumped in with these conditions in the past.
There are no statistics on the numbers of people suffering from M.E. but it is estimated that around 110 - 150,000 people suffer in this country at any given time.
M.E. isn't "Yuppie Flu". This unfortunate tag came from the United States, and was probably invented by the US media. In fact, M.E. strikes people of all ages (including very young children and very old people), from all social classes. There do seem to be more women than men with M.E, and the reasons for this are not known.
One thing is true of the vast majority of people with M.E. - they want to get better.
The idea that people with this illness
somehow "want to be ill", or that they are "malingering" is
absolute nonsense. Most of them had an active, enjoyable lifestyle before
becoming ill, and would like nothing more than to return to it.
Many people experience a period of what is known as "post-viral debility" - after having flu', for instance.
This may feature many of the symptoms of M.E, but rarely lasts more than a few weeks. In a majority of cases, it may last longer, and it is generally agreed that if it lasts longer than six months, and the symptoms correspond, then it may by considered to be M.E.
M.E. can last anything from a few months to decades in some unfortunate victims.
Like any other illness, M.E. affects everyone differently, and some are more affected than others. The most severely affected sufferers are completely bedridden, in constant pain and unable to attend to normal bodily functions. Others may be in wheelchairs most of the time, occasionally accumulating enough energy to leave their wheelchairs for only a short while.
Those who are quite mildly affected may still be working full time - and appear pretty normal - but may be having to rest every evening and weekend just to maintain their energy levels at work.
Even quite severely affected sufferers may look healthy - be assured, they're not. The same applies in other illnesses such as Multiple Sclerosis.
M.E. is a very variable illness - it does tend to follow a course of "relapse and remit", and it may vary from week to week, day to day, or even hour to hour.
So don't be surprised if one week an M.E. sufferer is "up" and doing normal things, and the next they're in bed most of the time.
Stress Alert! - Stress Alert! - Stress
Alert!
Bright lights, crowds, noise can bring on anxiety
Although there is very little that orthodox medicine can do for M.E. sufferers, many have benefited from a self-help approach, and there are things that can be done to speed recovery.
Many sufferers have allergies to foods or substances in the environment. So you may come across sufferers who are on restricted and apparently quite bizarre diets - there are good reasons for this (e.g. they feel really ill if they break their diet!).
Similarly, some people with M.E. find that things like exhaust fumes, perfume or ordinary household chemicals affect them very badly - so they won't go near them.
The most important thing to remember is that M.E. sufferers get very tired, and it may be disastrous for them not to rest when they need to, and for as long as they need to. Also, "normal" activities like conversation, which require very little energy from a healthy person, may be very exhausting for someone with M.E.
If an M.E. sufferer tells you they have to rest, or they cannot carry on talking to you, or they want you to leave - respect their need. It may seem selfish, but be assured - it is absolutely necessary.
Similarly, if a sufferer tells you they are not physically capable of doing something (e.g. walking to the corner shop) - believe them. What they may mean is that they might be able to do what ever it is, but know that they will suffer for it afterwards.
Sometimes, an M.E. sufferer may appear quite stupid, because they don't seem to be taking in what you are saying to them. These problems of concentration and memory are symptoms of the illness, and will vary according to how ill the person is feeling, and how exhausted they are. Slow down your conversation, and if necessary say or explain things to the sufferer a second time.
Remember that because of the effects of the illness on brain chemistry, some people with M.E. may be a little emotionally sensitive. Try to take this into account if the sufferer is irritable or tearful for no obvious reason.
If you ask a person with M.E. to do something or to be somewhere at s specific time, make sure they write it all down, as sufferers may make commitments and then be struck with a bout of "M.E. memory" and forget all about them! They won't feel offended if you remind them. Above all - be patient!
About me.
Hi
I‘m Barbara, and I was diagnosed with M.E. in1997.
This
site is designed to support other M.E. sufferers by sharing information.
Future
web pages will include some ‘Practical
Hints’.
My
M.E. Help & Advocacy Service and Personal Action Planning for people in
Essex, is available privately and may be available through your local Essex
Social Services Department who should contact me by e-mail at:
mailto:mehelpinfo@btopenworld.com.
Disclaimer: I am NOT a medical professional. I am a M.E. sufferer who is relaying some of her experiences and
opinions. None of the information on
these pages is to be construed as medical advice. Please consult your GP or a
doctor for such advice.
Reiki is a gentle and
simple hands-on touch healing system way of deep relaxing, reinforcing
recovery, giving inner peace and well-being.
You will love the calming effect and feeling of natural healing energy.
Reiki is a healing gift to
us all, even sick or nervous animals respond positively lying quietly enjoying
the calming effect. The experience of
REIKI is a powerful and nourishing energy.
Reiki is a Japanese word
meaning the channelled flow of universal life force energy, which allows the
recipient and the giver to absorb the revitalising healing energy that flows
through the hands of the giver.
Reiki is an ancient healing
art, and a refuge of well-being in this stressful modern world. A regular treatment will help enhance your
health.
Check for a registered
practitioner - via your GP.
Bananas, apples, pears,
apricots, grapefruit, oranges, peaches, plums - Help maintain blood sugar
levels.
Oats, porridge, basmati
rice, pasta, rye bread, unsweetened muesli- slowly release sugar into the
bloodstream.
Lentils, chickpeas, kidney beans,
baked beans, Soya beans - help steady blood sugar levels.
Red meat, poultry, oily
fish, green leafy vegetables, pulses, seeds, nuts, fortified breakfast cereals
- supply iron, which helps with severe tiredness.
Citrus fruit and their
juices, berries, peppers, sweet potatoes, green leafy vegetables - are rich
vitamin C sources - help absorb iron.
Shellfish, milk, bread,
whole grain, cereals, meats - supply zinc will help fight infections.
Eggs, fish, meats, poultry,
milk, Soya, fortified cereals - provide B12- a deficiency of this vitamin will
cause fatigue.
Cereals, milk, bread - a
good source of magnesium - will help with muscle weakness.
Apricots, mangoes, carrots,
sweet potatoes - supply beta-carotene - help iron absorption.
Food rich in protein will
stimulate the brain and mental alertness will improve.
Sugar, sweets, honey, cakes,
biscuits - raise blood sugar levels too quickly and cause ‘highs’ followed by
‘lows’ which will cause tiredness.
Coffee, Tea, cold remedy
drinks - best avoided at bedtime.
Should be avoided many
people with ME have alcohol intolerance.
·
Vitamins help, along with healthy eating,
little and often, and drink plenty of water to cleanse the system.
·
Multivitamins and mineral supplements
help the immune system.
·
Evening primrose oil, fish oil
supplements help reduce joint pain.
·
Drink two litres of water or other fluid
each day extra litre for each hour of exercise.
·
Won’t cure M.E. but
will help you feel better about yourself.
·
Pet therapy is very
calming. “Pets as Therapy” is a good
organisation to contact if you do not have your own pet.
·
Yoga video level 1, for
a few minuets can help with relaxation.
Rest
·
Relaxation Music when
you are resting helps ease away stress.
·
Aromatherapy oils on an
aroma stone will also help to relax.
·
Ask a carer to give you
a neck and shoulder massage using, Arnica Massage Balm.
Improve
·
Can’t concentrate to
read a book, try listening to talking books, they are available from the
library.
·
When travelling long distances
by car, try laying on the back seat, use a pillow and a blanket for more
comfort.
·
Gentle short walks
(100yds maximum) taking a walking stick/seat, so you can have rests along the
way.
Relax
·
Avoid bright lights,
crowds and noise these can bring on anxiety, panic attacks.
·
Join a local support
group; try your local library for information.
·
Shop by mail order as
much as possible.
Moderation
If you
want to get better be prepared to work at it.
The
answer to M.E. is me!
Planning
·
If you do not have your
own wheel chair when out shopping, use the Stores that have them
available. Most large stores are very
helpful and will, if asked, supply an assistant to help you.
·
Use remote controls as
much as possible.
Self - consideration
·
Have a telephone
extension next to your bed, BUT turn off the ringer. So if you hear the ringer
of the main phone it gives you time to answer without having to get up.
·
Have an intercom
doorbell fitted so you can answer without having to get up.
·
Don’t try to do too
much, PACING, means resting every 20 minutes.
·
Self-control, will
power, positive frame of mind, assertion about the future, are all practical
thoughts to have. All M.E. Sufferers
have differing disabilities.
Pacing
M.E. Help & Advocacy Service
and
Personal Action Planning
for people in Essex.
Help, advocacy and personal action planning is
available privately.
I may also be able to offer this support through your
local Essex Social Services Department.
Web:
http://mehelpinfo.users.btopenworld.com
E-mail: mehelpinfo@btopenworld.com
Updated: 26 January
2003
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