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.

Crash

This is a stage of the illness which can come and go, but is generally the first initial realisation of having something seriously wrong.
The Crash stage is defined as absolute exhaustion, total and utter desperation for relying on others and no real chance of achieving anything through the day.
The main problem for this stage is that action has to be taken to remove yourself from it. All obligations have to be cleared and bed rest is the answer. Crash leaves muscle aches, headaches, joint pain from slightest movements, possibly even constant nausea and very little energy to eat and digest food and drink- for this reason indigestion is another symptom that will rear it's ugly head.
Bed rest can be boring, tedious, never-ending; leaving a feeling of desperation and through this a glimpse of optimism has to be found somewhere. Acceptance of the situation is the first step- which might take a coupe of days as dips and crashes can be confusing, usually for me a sore throat is the first sign that something isn't quite right. After acceptance come action: sleep, rest, sleep rest!
It is at these times when I keep in touch with the world through TV and radio, newspaper reviews and weather forecasts. Looking forward to particular programmes everyday, but avoiding depressing soaps and films. Chat shows and magazine shows are great for the short attention span needed and I would also watch DVDs of TV series - again looking forward to the next episode as it helped the time pass. I also joined Facebook so that I could become part of daily life and find out what friends were up to just half a mile away. Emails everyday, or when I was able, became a good source of encouragement too.
It may seem like a giving-up option, but when bed rest is needed, for the body to heal this is a good option. By scheduling a sleep every afternoon I had a good indicator of when more activity can be added. As the weeks went by I noticed that less and less sleep was necessary, so I added little activities instead. I bought a few magazines to read, managed a bit of knitting, started searching and reading more about the illness online everyday and this was combined with a little yoga on a daily basis, with meditations and audio books.
If recovery is not monitored with careful pacing or little obstacles appear that are unavoidable like a virus or family situation, crash will happen during recovery. It will be less of a disastrous crash; more of a hiccup, but similar responses are required. Complete bed rest being one and just slipping back to a quieter routine, being another. I know one of the best things for me in these times is to avoid leaving the house, cut myself off from visitors and give myself some space. A couple of phone calls every week and an afternoon sleep every day, keeping my diet healthy and accessible, with a favourite DVD set or book to read is what usually helps me. After a couple of weeks of floating through I feel better able to pick myself up and keep going. Crash (or even just a little dip) requires acceptance and action.