This blog is dedicated to sufferers of M.E or Chronic Fatigue Syndrome - the people who are quite literally and quite regularly too tired to talk.
You can receive the posts of this weblog by email.
Just came across this site, run by a mother and son who both suffer from ME. They suggest we hold a vigil today, on International ME Awareness Day, in support of the ME community worldwide.
So, check out the website, light a candle and spend a few moments thinking about those who are suffering from this often forgotten illness.
Visit the Vigil for ME Awareness 2008 website for more info and have a pleasant evening all 
Today, 12 May 2008, is International M.E. Awareness Day, which kick starts ME Awareness Week. If you or anyone around you is suffering from ME, please take a few minutes today to think about them and wish them well.
Action for ME has today released the results of a survey entitled 'ME 2008: What Progress?' which you can download from their homepage.
ME Support - that fantastic site run by Louise and full of great articles written by ME sufferers, has recently moved so don't miss out, check out the new site today!
If, like me, you have had ME for a long many years, today will doubtless be much the same as any other but it is worth taking stock of your situation. Are you happy with the way you are dealing with your illness? Are you happy about any medication you might be on or therapy that you are receiving? Are there things you could do to help yourself - such as learning your limits and setting your own small targets for each day.
It is difficult with ME to break out of the habit of feeling unwell, and you are unlikely to have the energy to do anything ground-breaking but just make today a day about yourself and a day to make the changes you need to help you get better.
Best wishes
It's been a while, I know But here at long last is another contribution to this blog dedicated to giving information, support and advice about the condition M.E.
M.E. and surviving Christmas
Christmas should be a time for celebration (whatever your beliefs), relaxation and whiling away the hours in good company, with a bottle in one hand. It is more likely, for most, to be a time of stress, exhaustion and catching forty winks when all around you have passed out. Add M.E. into the equation and you have an already ‘worn out’ body trying to do more than is humanly possible all for the sake of a few days of festivities, which most people will have little, if any, memory of.
I remember one Christmas, back in the early days of my M.E. when I literally thought my head would explode because the pain in my sinuses was that severe! I had never felt anything like it and just wanted to bury my head under the duvet until January 2nd. Of course, I didn’t because you seldom get away with ‘hiding’ over Christmas.
Another year I was sat at the Christmas dinner table between two family members who kept my glass constantly topped with red wine and by 5pm I was rolled up in my duvet, by the radiator sleeping like a baby. You try to join in and yes, at times you really enjoy yourself, but Christmas, like any other period of exertion, leaves its legacy: decline, downturn, relapse.
Call it what you wish, and it will depend on your current state of health, but generally you’ll all agree that it is impossible to ‘do’ Christmas without spending the first quarter of the New Year (at least) getting yourself back to a more manageable state of health.
And so I present to you this: a light-hearted guide to surviving Christmas:
Buying presents
The problem…
Anyone who thinks that the stresses and strains of Christmas begin on Christmas Eve is sorely mistaken, or male. The whole thing starts somewhere around the end of November when you suddenly realise that the festivities are only a month away and you haven’t written your Christmas list, let alone visited a shop and purchased anything that remotely resembles a present.
And then there’s Christmas cards. Before you’ve even bought or wrapped a present, cards must be sent far and wide to your near and dear, all prior to Mr Postman knocking off for sherry and mince pies. It’s a daunting task to remember daily duties when you have M.E. and the extra chores of Christmas only increase the pressure you’re under, to the point where omitting Great Aunt Sylvia’s Next Door Neighbour’s Cat from your Christmas card list suddenly makes you feel like a failure.
The solution…
The internet – get connected, get surfing and get Christmas to come to you!
Decking the Halls
The problem…
It wouldn’t be Christmas without glitzy decorations and flashing fairy lights adorning every window, but there is a price to pay - apart from the electricity bill - your health. First you have to locate the stuff from the deep dark depths of storage hell – your loft, then you must hang it somewhere in a stylish-enough fashion so it doesn’t look as though the Christmas fairy tripped up on the way down the stairs and dropped her spoils carelessly all over your house.
The solution…
Go for the minimalist look. Get the partner and kids to help – they’ll probably enjoy it anyway. If you are particularly sensitive to bright lights opt for something subtle.
Festive food and drink
The problem…
Let’s be honest here, Christmas food and drink does little to aid the digestion of an M.E. sufferer, many of whom will experience IBS and migraines on top of the usual aches, pains and fatigue. You can abstain completely and feel as bad as usual with the added misery of being a killjoy, or you can join in as if you are as fit as the next person and be well and truly en route for a relapse come New Year.
The solution…
Worry less, have what you feel like when you feel like it, pace yourself and avoid any food or drink that you know will guarantee you a miserable Christmas. If you cannot tolerate alcohol treat yourself to some ‘posh’ soft drinks and drink them in a wine glass.
Not-so-spring cleaning
The problem…
Christmas is coming. Relatives, friends, friends’ of friends and their boyfriends’ friends will be visiting. You launch yourself into an unrelenting cleaning spree as if the Queen will be making her speech from your sofa.
The solution...
Don’t clean what doesn’t need cleaning! Visitors come to see you, not your sparkling floors and if you catch anyone dipping their finger in the layer of dust on top of your television, wrap up a duster as an extra present and let them make themselves useful!
Visiting the family
The problem…
Why is it that come Christmas your usually placid friends and family all seem to demand a time slot? It’s virtually impossible to squeeze in all the relatives, in what to some is only a two-day holiday, so you have to let somebody down – that’s natural and we all do it because none of us are superman/woman.
The solution…
Say no! Don’t feel bad about breaking dates or not turning up to the party. Put yourself top of your list. Try getting people to come to you instead and get them to bring a bottle and a plate of food each. Hold small gatherings during daylight hours and make sure you insist that people only stay for a couple of hours. Have help at hand to tidy up.
Clearing Christmas away
The problem…
Uneaten food, empty bottles, enough scrunched up wrapping paper to restore at least one forest, car boot loads of flashy new toys that will be discarded with the old ones by mid-January, unpulled crackers, more empty bottles, cardboard boxes big enough to set sail in, little-tinselly-bitty-things of unknown origin, even more empty bottles…
The solution…
Get somebody else to do it! Make a game out of tidying up for children and keep back some of those Christmas chocolates as prizes for the fastest clearaway! Don’t forget to recycle all those empties
Most of all remember to enjoy yourself. You will not be struck down by a thunderbolt from above if you don’t get chance to vacuum on Christmas Eve or forget to buy a carrot for Rudolph. Christmas is a time of togetherness, so spend it well.
HAPPY CHRISTMAS and BEST WISHES for 2008
Having just returned from a surprisingly stormy week in Menorca, it occurred to me how important holidays are to those with long-term illnesses such as M.E. but I also realise that you cannot have a true holiday without some element of travel, and M.E. does not enjoy being ‘moved’.
Travelling is tiring to the holiday-maker in a perfect state of health but serves only to exacerbate the fatigue symptoms of an M.E. sufferer, to the point where you wonder if it is worth it.
Holidays though, are the perfect tonic and can rejuvenate and revitalise, allowing both mind and body to relax and become more in tune with one another.
It is without doubt the flights, long car journeys, train trips and coach excursions that cause tiredness even before the holiday starts and if you thought that getting there was difficult try getting back! Delays, and further long journeys after an enjoyable holiday (where you often feel better than normal and thus do more) can leave you feeling as though you have gone backwards in your recovery.
Here then, are my tips for reducing the knock-on effects of holidaying (none of which I adhered to and am thus paying the price for drinking far too much sangria and staying up late):
• Get yourself organised before you go. Try to book holidays well in advance so that you can sort a few things out each week and avoid any tiring last minute mad dashes to clothing stores and supermarkets! Remember you are not going to anywhere uncivilised and they will have shops too!
• Make sure you have an EHIC card (if you are travelling to Europe) and insurance to cover you should you need any medical treatment during your stay. It is also worth getting holiday insurance for trips in this country just in case you have to cancel due to poor health.
• If you are going abroad try as far as possible to get flights during the day so that you do not have the added fatigue of flying through the night.
• Pick destinations that are not too far!
• If flying does not suit you and makes you feel worse consider other methods of travel and types of holiday such as coach trips (some do door-to-door), cruises (not all are expensive!!), holidaying in the UK (we often ignore the places on our doorstep) or making your way to your destination slowly and building rest stops and overnight stops into your holiday.
• Try out of season breaks for a cheaper and quieter alternative.
• Get plenty of rest during your holiday and stay out of the sun from 12-3.
• Try gentle exercise such as swimming or walking if you feel up to it.
• Avoid alcohol if it does not suit you or ensure you drink only with meals and keep drinking water as well.
• Avoid dehydration – drink plenty of water, preferably bottled water as drinking tap water in many places can cause stomach upsets.
• Get someone else to lug your suitcase around. A few moments of lifting a heavy case could sap what little strength you have and exacerbate sore and aching muscles.
• When returning from holiday do not rush around trying to get unpacking and washing done the minute you get in the door. Give yourself at least the rest of the day and a good night’s sleep to recover before you attempt it!
• Lastly, and this is the most important point of all….ENJOY YOURSELF!!! Take time out for yourself, look at it as a retreat and an opportunity to unwind and relax in different surroundings because a change is good for the soul.
Hope this helps anyone planning on taking a break. Remember, as May Sarton once said:
“A holiday gives one a chance to look backward and forward, to reset oneself by an inner compass.”
Relax and enjoy 
It is incredibly important when dealing with any kind of long-term illness to maintain a sense of direction and remain positive. It is so easy to sink into a depressed state of frustration and fear but this weakened mental state will do nothing to improve your health.
When dealing with M.E. you are often faced with having the condition for many years and possibly, for the rest of your life but this does not mean that you will be ill forever, more it suggests that you need to modify your lifestyle to suit your abilities and keep a healthy outlook through body and mind.
I know non-ME sufferers who become ill simply because they think they will be or are looking for the next bad thing to happen. This is not a healthy way to live your life. Life is too short to concentrate on the negatives, which is why I tend to give the news a lot less attention than I used to.
It is much more uplifting to concentrate on the positive aspects of your life, to revel in your achievements to enjoy the company of friends and family around you, to witness the crisp winter mornings and sultry summer evenings; to enjoy living.
It is also helpful to recognise your own feelings. If you can say to yourself (and not out loud or to others) that you are in a state of anger or sadness, your brain can reverse this and by employing such a technique you are also coming to a better understanding of yourself.
That in, essence is what M.E. does for you. There may be those who argue that there are no benefits to this illness but I totally disagree. Without M.E. I would lack direction, determination and enthusiasm and would not have reached 30 and come to understand myself as well as I do.
M.E. will give you time to reflect. Use this time to appreciate and comprehend yourself, to discover the everyday things that bring you pleasure and always aim for something, no matter how daft or far-fetched it seems.
That, my friends, is being positive and is as good a reminder as any, especially at a time for me when I am feeling quite poorly, that you get back what you give out.
Don't just take my word for it 
Here are some inspiring quotes to help you maintain that positive focus:
"If you don't think every day is a good day, just try missing one." Cavett Robert
"The only disability in life is a bad attitude." Scott Hamilton
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." Buddha
"Being in a good frame of mind helps keep one in the picture of health." Author Unknown
“A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.”
- Hippocrates
Absolutely! I wouldn't have achieved half the things in my life or enjoyed and made the most of those tiny, insignificant yet wonderful moments if I hadn't suffered from M.E. Coping with illness is the hardest lesson to learn but the reward is a stronger, more positive side of you which you didn't know existed.
Keep your chin up
Here's to a happy, healthy, you
Conventional medicine can do little to alleviate the many and varied symptoms of M.E., which is why so many sufferers turn towards alternative therapies.
M.E. affects everyone in a slightly different way, making it a difficult condition to treat or diagnose. Symptoms also range from mild to severe and sufferers often find themselves fluctuating from one end of the scale to the other over a period of years.
Alternative or complementary medicine comes in many guises and what works for one person with M.E. does not work for another. Sometimes it is easier to break the illness down and use a particular method of healing for a particular symptom such as aromatherapy to ease aching muscles and joint pains, homeopathy to combat dizziness or nausea and hypnotherapy to achieve a more positive state of mind.
Your experience of alternative healing will very much depends on your therapist, your initial state of health and your attitude towards non-conventional medicine (you cannot be helped by anything which you are convinced doesn’t work!).
My own personal experience of alternative healing has been a very positive one. I won’t lie to you and say that one course of treatment completely healed me but I did find, in particular, homeopathy and reflexology very helpful in getting me up to the next level in my recovery. Reiki helped me to feel calm and I can currently tap into previously undiscovered energy reserves through brain entrainment.
Here are just some examples of alternative therapies for you to consider:
Aromatherapy – the practise of using volatile plant oils, including essential oils, for psychological and physical well being.
Acupuncture - The technique of inserting thin needles through the skin at specific points on the body to control pain and other symptoms.
Acupressure - The application of pressure or localized massage to specific sites on the body to control symptoms such as pain or nausea.
Chinese Herbal Medicine – Originating from the 3rd Century BC, Chinese Herbal Medicine is based on the concepts of Yin and Yang and aims to restore balance.
Homeopathy - a gentle, holistic system of healing based on the theory of treating ‘like with like’. Homeopathy is a natural form of medicine that uses immeasurably small doses of medicines to stimulate the body's own defense and healing process and focuses on bringing the entire body back into homeostasis, or balance.
Hypnotherapy - in Hypnotherapy, a deep state of relaxation is achieved through focused attention. While in this trance-like state, the unconscious mind is highly receptive to new perspectives and ideas. It can be used to bring the subconscious mind into alignment with the conscious mind to make positive suggestions.
Indian Head Massage - a treatment based on old Ayurvedic techniques involving work on the upper back, shoulders, neck, scalp and face. Massage movements are used to relieve accumulated tension, stimulate circulation and restore joint movement. Indian Head Massage can help reduce stress and fatigue, increase mental clarity, and relax and rejuvenate the receiver.
Reflexology - A science based on the belief that each part of the body is interconnected through the nervous system to the hands and feet. Pressure is applied to certain parts of the feet and hands in order to promote relaxation and healing elsewhere in the body and helping to restore balance.
Reiki - Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. If one's "life force energy" is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.
Meditation - Meditation as a form of alternative medicine brings about mental calmness and physical relaxation by suspending the stream of thoughts that normally occupy the mind. Meditation is used to reduce stress, alter hormone levels, and elevate one's mood.
Yoga – A system of exercises to help you control the body and mind. Yoga also improves your breathing and focuses the alignment of your body. Through practices of holding a variety of body positions or asanas, and the centering of the mind and breath in a meditative way, the practitioner increases body awareness, posture, flexibility of body and mind and calmness of spirit.
Here are some websites which you might find useful:
BBC Guide to Complementary Medicine
Complementary Healthcare Information Service UK
the NHS Directory of Complementary and Alternative Practitioners
Register of Chinese Herbal Medicine
The British Reflexology Association
International Institute of Reflexology
I hope this gives you some more options and helps you to reach an improved state of health.
:p
Whatever it is, we all need something to provide us with the inspiration to fight on, to combat M.E. and feel well again.
It may be your spirit guide leading you, angels, or your God. It could be the ones you love, a dear friend or just a belief in yourself.
Tap into that energy source, draw strength from the foundations of the relationship and recognise that you are never alone and that you can get through this.
Higher Power
In my hour of need, I see
A figure, silent,
Draped in blue.
Resting at my feet, I feel
His solitude wash
Over me.
In my hour of need, I sense
A spirit, tender,
Dry my tears.
Draped around my heart, I watch
His hands engage my
Innocence.
In my hour of need, I hear
Him breathing, shallow,
Sound asleep.
Guiding me with dreams to find
A place where I no
Longer fear.
© Frances Pallett
If you liked that, you can read more of my poetry at Word it Right.
Well we all need some of those, especially with the depressing nature of the current British weather! Do not let this get you down, make the most of those sunny moments and let fresh air and sunshine revive you.
“Live all you can; it's a mistake not to. It doesn't so much matter what you do in particular, so long as you have your life. If you haven't had that what HAVE you had?”
Henry James, The Ambassadors
:p
I have just come across a fantastic website, ME Research UK, which despite countless internet searches through my M.E. years, I have never heard of before.
ME Research UK is a national UK charity funding biomedical research into Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). They aim to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME and also have a mission to 'Energise ME Research'.
Their website contains lots of useful information including research publications, support groups and useful links. You can register to receive e-mail updates on new additions to their website and also to receive their newsletter. You can make donations and sign up to become a friend of ME Research UK. They've also got some great Christmas cards which you can order by downloading a PDF flyer from the site and all profits go to ME Research UK.
The charity has helped produce the book Shattered: Life with M.E.
This website is definitely worth a look and I will be putting in my order for some Christmas cards very shortly
