Monday, December 29, 2008


Previous readers of this blog may have been wondering what’s happened – why haven’t I written anything for so long? It’s not that I’ve stopped writing. In the past few months I’ve filled several notebooks of longhand, and many pages of laptop files; but it’s all been more personal than I’ve wanted to share on a public blog.

I left DR Congo in early February knowing that I needed a break from the work I’d been doing, and a good rest. I decided to use the opportunity to fulfil my dream of returning to Europe and revisiting places that I’d lived in or visited thirty years earlier. I had several wonderful months completing much of what I intended – with one major exception. I had intended to relax, improve my health, and generally de-stress and eventually get back into a frame of mind where I could either return to work overseas or find some other type of employment that I’d enjoy. While travelling I gradually found myself becoming more tired, more worn out, and feeling less well than ever before. Arriving in Malta in late August I let go of all my sightseeing goals and simply rested. This didn’t seem to help either. I began keeping a written record of how tired I was, how I was feeling in general, and other symptoms. After a couple of weeks I knew there was a problem. I began seeing medical specialists and by the second specialist I had a diagnosis: myalgic encephalomyelitis (ME), aka chronic fatigue syndrome (CFS), or post-viral fatigue syndrome, or chronic fatigue and immune dysfunction syndrome (CFIDS).

Just the fact that there are so many different names for this illness tells you there’s a problem. Indeed, the medical community still has no firm evidence for the cause of the problem nor the exact nature of the illness. There is, as yet, no cure. There are a range of symptoms and there’s a wide range of the degree to which people are ill: some people (a very few) are actually able to hold down full time jobs; at the other end of the spectrum some are so incapacitated as to be permanently bed-ridden. The illness is recognised by the WHO and is listed under “other disorders of the nervous system” G93.3 as “benign myalgic encephalomyelitis”.

In my case although I‘m unable to function in the type of demanding role that I held in the past, fortunately I can take care of myself and carry out basic daily tasks such as shopping, cooking, cleaning, and so on. I can read uncomplicated material without difficulty, although technical, dense information becomes much more stressful and quickly incomprehensible. I can write for a couple of hours a day, but after that brain fatigue sets in, concentration goes, and I have to rest. I’ve had to give up long walks, and I need to think carefully before using up too much energy on a single task. Going to a large crowded supermarket with muzak is extremely draining and on the whole I limit that to once a fortnight. I mostly buy my fruit and vegetables from small local vendors.

The two most significant features of ME/CFS are muscle-related problems (extreme muscle fatigue and pain, general lack of energy) and brain fatigue/malfunction. Although low energy levels are frustrating and tiresome, it is the brain-related problems that make it impossible for me to return to the type of work that I’ve done in the past. Memory and concentration are affected; any type of mental exertion – especially when it involves other people, such as in meetings, team discussions, teaching, etc. – quickly results in ‘brain fog’. This is a dense cloud or fuzziness like having a brain full of cotton wool (often turning to dizziness) that seems to envelop the brain making it really difficult or impossible to think things through, see matters clearly, or make decisions, and can even result in slurred speech. Before my diagnosis I signed up to take a teacher training course, thinking that I might return to teaching. The classes were just four mornings a week, but left me exhausted, dizzy and feeling generally unwell. I would come home each afternoon and fall onto the bed, often unable to prepare even a simple lunch.

Now I’m learning to pace myself, rationing my activities, and learning when to tell myself that it’s time to go home and not do ‘just one more thing’. ME/CFS is counter-intuitive. Many of us believe that we have to soldier on through an illness and we’ll gradually get better. Most of us have also been fed endless articles by the media telling us how important exercise is for our health. Before my diagnosis I struggled on, walking as much as I could every day, believing that, whatever might be wrong, the exercise was doing me good. Specialists now know that too much exercise can cause a deterioration in the condition of those with ME/CFS. Every day is an internal battle between wanting to get things done, wanting to get out and be active, telling myself I need to get on with it, and trying to listen to what my body is telling me about how much rest I need.

And now I do need to rest!


Leslie said...

Oh my goodness, Nicky, I'm so sorry to hear you are dealing with this. It sounds dreadful and I send you the best wishes for improved health. And also for a great New Year.

Leslie on the Big Island

Aylwin said...

Hi Nicky, I don't know you, but I do admire the work you had been doing before falling ill! I've had ME for 22 years now, and I do so feel for you in that awful realisation that one can't keep up with one's former life. I see that you have links to hummingbird (Jodi's site) and other good resources, so I'm sure you have the right idea. Just wanted to say (probably not the first time you've heard it), that utter and total REST is your biggest ally and best hope for recovery. The research supports this. I was a single parent when I fell ill so didn't have that opportunity. You are extremely lucky to have gotten a [proper diagnosis so quickly, I'm glad I found your blog and I do wish you well...literally! Cheers, Aylwin from Canada

April Henry said...

I put this in my blog as well, but

I believe Lynne Sharon Schwartz also has it and has used it in a book:

The relative likes this site:

Good luck!