ME Awareness

As well as being Mother’s Day, May 12^th is also the anniversary of the birth of a famous and admirable woman – Florence Nightingale.  I’m sure you know the story of the way that she went out to help with nursing the wounded injured in the Crimean War.  In 1860, Nightingale laid the foundation of professional nursing with the establishment of her nursing school at St Thomas' Hospital in London,  the world’s first School of Nursing.

Nightingale became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She was often bedridden for the last 50 years of her life. Despite suffering from a debilitating illness, she managed to found the world’s first School of Nursing.   Because of this, May 12^th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).

I don’t talk about this much – in fact, I’m not sure whether I’ve mentioned it before, but ME/Chronic Fatigue Syndrome is something I’ve lived with for years. I can recall almost exactly the time it started to affect my life.  I had glandular fever and I was really struggling.  You need to rest, the doctor said – lots of rest.  Inset hollow laughter here. I had  a two and a half year old son – active, intelligent – demanding.  A husband who was dealing with a new job, often working teaching evening classes, we’d just moved house  so my chances of ‘rest’ were limited.  I didn’t know then that this sort of situation was the perfect seeding ground for ME/CFS.

There was no such diagnosis possible back then.  ‘ME’ was not recognised – and of course was known as ‘Yuppie Flu’.   Some doctors refused to recognise it as an illness at all. I remember one doctor who told me that I either admitted I  ‘just’ had depression  - or he would refuse to see me again. Guess what, I left that practice and turned my back on him. I was depressed because I was ill. Not ‘pretending’ to be ill because I was depressed. The hardest thing in those days was the  seemingly endless shuttling  from one doctor to another, the tests  for this, that and the other in the hope that someone could tell me what was wrong. And being told it was all in my mind.

These days there is a blood test that shows problems that create ME/CFS   which is a great help. The condition can also  often lead to the added complication of fibromyalgia. Another illness that some people refuse to admit exists. I have acute fibromyalgia as well as the ME  and at times it can be very unpleasant indeed.

The main symptom of CFS/ME is feeling overwhelmingly tired and generally unwell. Symptoms vary from person to person, and the severity of symptoms can vary from day to day, or even within a day.  This fatigue  doesn't go away with rest or sleep. This can make it difficult to carry out everyday tasks and activities.

Other symptoms of CFS/ME include: sleep problems, such as insomnia, muscle or joint pain, headache, a sore throat or sore glands that aren't swollen , problems thinking, remembering or concentrating , flu-like symptoms, feeling dizzy or sick , fast or irregular heartbeats (heart palpitations)

But  - people say when I  tell them I have ME  - you write books, you teach, you travel. Yes I do, because I refuse to give in to this thing. I do things that matter to me – even though sometimes after a journey I’ve made, a course I’ve taught or  a book I’ve written, I need time out to recover.

Why mention this now? Well, really because I’ve seen the posters and the messages, how people are talking about International  ME Awareness Day and  I think it’s important to ‘come out’ – and acknowledge this problem. Because ME is an invisible disease. You can’t tell from someone’s appearance whether they have it. You can’t see if it’s a ‘good’ day or a day when the symptoms have spiked and someone is feeling very ill indeed.

 Personally, this last year has not been a good one.  So writing has not been good either. People have started to ask questions about the lack of new books from me – so I thought International Awareness Day seemed like a good day to talk about one of the reasons for that.

I know there are so many others who are dealing with this illness. They have good days and bad days.  Some end up in wheelchairs.  Some are housebound. I know I couldn’t do as much as I do without the loving support of my husband.

So I just thought I’d do my bit to raise awareness of this problem. It’s one that so many people live with as ‘normal’ but because  it’s an invisible disease so you might never be aware that someone has it.