Chronic Fatigue Syndrome and ME (Myalgic Encephalomyelitis) are, if you believe some doctors, synonymous descriptions; separate phenomena, if you believe others. If it IS really all in the mind, then I wish someone would tell me how to instruct MY mind to get it well and truly OUT! I’ve been saying that for years, well, joking about it more like. So, what is it really like to live with this debilitating condition.
Well, for those of us who are afflicted, it’s probably a lot easier than those who have to live with us. It’s a big deal, a life-changing big deal that simply won’t be ignored. I’ll give you an example:
From 1994-6 I was a Medieval Archaeologist working at Prague Castle. It doesn’t get any better than this for one such as I, so it can be considered as the pinnacle of my career. A working day would consist of getting up to be at work by 8am, lots of bending, kneeling, heavy lifting, thinking, evaluating, recording, drawing, very short breaks, finish at 4pm. Evenings were spent sightseeing, entertaining, being entertained by other archaeologists, either visiting or colleagues, until the pubs were shut. Then walk home, a long way. Always lots of walking, and other demanding physical activities. I began to notice that some of my leg and arm muscles became sore with pressure and began tingling if I didn’t relieve the pressure quickly, like having pins and needles but without the numbness. And the continued walking became laborious, the spring had gone out of my step. Then, one evening, as I was visiting my Carmelite friar buds in the church I’d been adopted into (that story will have to wait for a Spirituality post!), I just collapsed. Right there in the middle of the huge Baroque vestry of the church, simply folded neatly but irrevocably onto the floor. I’ll leave the subsequent details for that later post, suffice to say that from that day on everything changed. Since that day I’ve never had anything like the same energy levels I had before that event. The doctor I had then told me that my energy cup would never be any more than half full again. I don’t suppose I believed him; don’t remember if it even meant anything to me then, always believing that nothing I wanted was beyond my reach.
But this was a game-changer in more ways than I could ever have imagined. I had to leave Prague, the place where I had been the best that I could be in my chosen career. And somehow the brightly shining light that I’d been following for so many years just went out as I tried to re-imagine my life and find a working road map. I decided to concentrate on my writing from then on, but I didn’t have a road map for that, and also didn’t understand how to draw one for myself. It was a discipline I had to enforce on myself, not at all like the work ethic where you just show up and get on with it. And I still had to pay the rent, so I wasted what little energy I did have on being someone else’s slave, and the book I spent so many years writing (see My Books!) just sat gathering dust while I plummeted into a complete physical and mental breakdown. I spent the next 12 years in what I call the “Dark Night of My Soul”. Ever the one to outdo even the saints in every endeavour, I believe I gave both Saint Teresa of Avila and Saint John of the Cross a very good run for their money on the back of that particular concept.
The actual diagnosis of CFS/ME helped me to understand, finally, that I wasn’t just a mad malingerer who was going nowhere fast, but a person with a condition. Unfortunately, it was a condition that hardly anyone, bar those of us who are the afflicted, seemed to understand. I’m not sure we the afflicted really understand it either, or, surely, we’d be able to make ourselves better, wouldn’t we? The best understanding we can realistically achieve is to know, upon listening to them very carefully, what our bodies are telling us they need. If we are too physically exhausted to take even light exercise in order to “keep fit”, and that term’s a joke in and of itself, we should NOT, as one healthcare professional once told me, get ourselves to the bloody gym!
I’ve had three of four courses of CBT (Cognitive Behavioural Therapy, for the uninitiated) over the years, which, whilst useful in several unrelated ways, have only really taught me how to “manage” my condition so that I do at least get to do the things I really enjoy rather than wasting the energy doing stuff that isn’t life enhancing. It’s a hard call sometimes, and my lifestyle has changed enormously. Imagine if you will, a house proud, seamstress who loves her gorgeous little Westies, having to make the excruciating decision to spend what energy the Universe has given her for the day on 1) making cushions, curtains and clothes 2) cleaning the house or 3) walking and grooming the dogs. I’ve tried an expensive alternative therapy (won’t name it except in a private message as that would be just too rude), which works on the principle that the hypothalamus is the centre of all the problems, and that it can be trained by a process that seems to be based on building self-worth and saying ‘no’ to the things your subconscious doesn’t want you to do, in order to give it the messages it needs to regulate itself correctly, at which point you get miraculously better and catch a cold. That’s maybe a cynic’s appraisal, but it didn’t work like that for me. My immune system still shields me from any form of viral infection; I haven’t had even so much as a cold for at least 13 years now, but that could be due to the fact that I’ve hardly ever seen anyone with a virus during that time, of course.
So, to conclude: the therapies and pills and potions I’ve been given over the years simply have not worked further than to improve my outlook and self-awareness, and, in my own ever so humble opinion, it’s therefore NOT in my mind, or these therapies would surely have worked as well on the physical as they have on the psychological issues they were designed to tackle. The only thing that works is personal awareness of energy levels and conservation of that energy for the things in life that I enjoy, like writing, and other solitary things one can do from behind a desk and in front of a computer screen. So, it’s writing, walking the dogs, and sod the housework, all the way. It’s just as well I’ve grown to love my own company and tend to prefer living the life I lead in my own head, as opposed to hands-on experience of the rest of the world, isn’t it? The picture attached to this post is my proof of happiness: this is where I live, in my head, every day. But what about the housework, I hear you house proud ladies scream? Oh, don’t worry about that, when I’m a rich and influential author I’ll just pay someone else to wade through the accumulated dust!