What Is ME?

This is a question that can have a very simple answer or a very long winded answer. The simple answer is that ME, Myalgic Encephalomyelitis, it is a chronic neurological illness. Before I boggle your mind with the long winded symptom answer I would like to boggle your mind with an explanation about the title of the illness. Myalgic Encephalomyelitis came about in 1956. It had been recognised as an illness for many years, possibly even centuries, but this was the first time it had a name. Two UK doctors performed examinations and post-mortems and found inflammation of the neck, brain and spinal column; Encephalomyelitis. This name was paired with Myalgic to describe the muscular pain. Some patients may also have different titles for the illness. CFS, or Chronic Fatigue Syndrome, is a title coined in the 1980s by insurance companies in the United States of America. ME was costing too much money and a solution was sought to solve the expense. By coming up with a new title, more people could be described as having the illness and the view could be introduced that psychological causes and treatments could be the only path to take. The expense was therefore handed to another authority and the burden of physiological tests and trials were no longer the first instinct of medical practitioners. Chronic Fatigue is a symptom of so many other illnesses, cancer or liver failure for example and this created a great deal of misunderstanding about the original ME. Many people with CFS have these underlying illnesses that need addressing which can be dismissed; so by being given this title it is thought to be 'all in your head'. Others with CFS should be given the diagnosis of ME and will then, by some doctors, have a fuller and more rounded treatment programme. Of course all of us with ME will still come across doctors, friends, family and complete strangers (even complete health authorities) who will decide that for us it is still 'all in your head'! Other titles for ME include CFIDS, Chronic Fatigue Immune Dysfunction Syndrome and less frequently PVFS, Post Viral Fatigue Syndrome.
So the long winded symptom answer... I will now attempt to explain in depth how varied and wide ranging the symptoms and consequences of this illness can be. It is very misunderstood. As when someone who is undergoing chemotherapy may wear a wig and take great time and effort on their appearance when leaving the house, a patient of ME will only ever leave the house at their best. This may be a few times a week, once a week, once a month, or only ever to visit their doctor for a 6-monthly appointment. To leave the house takes preparation for many days in advance. A wash with a sponge and towel while sitting in bed may happen on the morning of the event. Hair wash may have happened two days before. A very light routine will have been needed for many days, almost as if saving all the energy in advance to be used for this two hours when leaving the house. Many options of clothes will have been thought through for days and maybe weeks, as temperature, weather patterns, comfort and ease of dressing are all part of the process. For this reason the outside world does not see the true consequences of ME. So much of the illness is hidden. What is hidden is how when entering the house there maybe a collapse in a chair, 3hours sleep with hot water bottles, blinding migraines, pain killers taken 4times every day to lighten the joint and muscle pain, with skin sensitivity close to having an annual flu bug on a continuous cycle. Indigestion can be chronic and leaky gut is common. Muscle weakness, including the cardiac muscle, limits activity beyond that which would be restricted by any consequential pain. A lack of sunlight can send some patients into depression as can the lack of contact with the outside world. This only causes more confusion and misunderstanding from those who are around you, as surely depression causes tiredness too, in that case 'you just need to snap out of it!' ME is so different. Anti depressants may give you a better view on life, may help you see things from a glass-half-full perspective, but it will not take away the other symptoms to any great degree. Other symptoms can include seizures, paralysis, low blood pressure, poor blood sugar regulation, hair loss, the list is endless and different for every sufferer. Each one of the symptoms can cause separate secondary symptoms and illnesses causing even more confusion. After such a mind boggling explanation all I can add is that in some ways I see ME as my body screaming at the top of it's lungs in an "I can't cope anymore!" gesture. I just have to learn how to scream right back "I'm not afraid anymore!". Over the years I have found this easier at some times than others and with having had ME for so long I am starting to say it more often and my symptoms are becoming less. It has been a long hard struggle with one thing attacking me from one side while my mind has been occupied with another alien invasion on the other. I have decided to let these invasions float on by and the aliens are starting to find that they need to search for a host who would be more inclined to have a battle.

Chocolate Wednesdays

I have talked about my restricted diet. Because of my Candidiasis my everyday food has been restricted for almost twenty years. No sugar, including most fruits, no refined carbohydrates, no cheese or any other form of yeast. Thanks to these restrictions my digestion is finally showing signs of returning to pre-candida acceptance. So much so that I have... eaten a chocolate muffin!
One each day for the last three days. Wow. I remember those days so well. The recipe for my Wednesday bake had to be easy to create-as mentioned in Making Muffins! I also needed a recipe without milk and baking fat as we were seriously diminished in the fridge department. Thankfully my wonderful Muffins book, a present from my sister last year, proved very helpful. Replacing milk with an instant coffee/150ml water mix was the answer and I also searched for an option with oil instead of baking fat. So in went the flour, baking powder and bicarbonate of soda. The mixer was ready. I then had a sit down, while the coffee cooled down and prepared the muffin cases. Next was yoghurt, sugar, egg, oil, cocoa powder and the coffee. It looked wonderful all stirred together in the Pyrex jug. Like a rich, thick, gooey sauce ready to pour over ice cream or a sticky sponge pudding.
So I slowly poured it into the mixer and let it mix.
I half filled each muffin case and then added an extra touch-a piece of plain chocolate in the centre of each, before dividing out the rest of the indulgent concoction!
Into the oven and 20 minutes to relax. Wednesday was a good day; sunny, although not really warm enough to sit outside for longer than ten minutes. I managed to rinse and tidy up most of the bowls and spoons I had used for the baking as well as putting all the ingredients away. I had an afternoon in bed with the BBC adaptation of Cranford for company, and also achieved a bit of knitting.
I am getting used to being physically tired. Wednesday was one of those days. It felt great to get to bedtime being exhausted on the outside. My tiredness is sometimes all on the inside, I feel the whole of my body being dragged to the floor. My mind becomes clouded, with very little retention of anything much that is taken in. Today is one of those days. On a tired day I try to lift myself above it- instead of struggling with words, I'm searching through a thesaurus as I'm writing! My head needs support from an arm on a table, my eyes are battling the lids. I'm caught in a loop, every minute thinking 'I'll be better in a minute'! Of course this rarely works, as I am actually exhausted! So I decide to float. I observe the anarchy of my body, the pleasures I can still enjoy in this situation. I eat a fruit yoghurt, watch a favourite film, choose a different chair and bob about in middle of the ocean knowing that shore will find me again.