Recently I have ‘shared’ various posts on Facebook about ME or Chronic Fatigue Syndrome, adding something about my own experience of this disease. Because having ME was so important to me and has had such profound long-term effects, I forget that not everyone knows I was ill: I was absent from my job at school for long periods of time (six months being the longest) but didn’t tell my students what was wrong with me; it is not the first, second or third thing I announce to people I have got to know in recent years. So I have decided to write something about my experience. I am interested to see what I find myself writing (I am not going to plan this piece, contrary to what I tell my students to do) and hope that other people can appreciate some of the lessons I learnt while being ill and during my recovery.
I suffered from ME for some years in my early thirties. I can identify the first moment it made itself known to me during an inexplicable attack of vertigo while walking up a snow-covered Helvellyn with close friends in January 2003. It was as if the world had suddenly turned upside down and I couldn’t make it go back again: the various slopes, up, down, left, right were now slouching away at 90 degrees and I lay, clinging to the snow in a state of paralysis, mortification and terror. The next moment was at the end of March, in Egypt. A dizzy spell, which made me reel and reach out for the nearest solid object. Heat, I assumed, although after spending time in places like Aswan for some years in full summer this seemed unlikely. A week later, back at school, I fainted, and within two weeks I was no longer able to walk.
ME is a little-understood illness. It was known as Yuppie-Flu in the 1980s and attributed to ‘burn out’ in the new faster Thatcherite consumer society. It was, according to the press, only the rich who got ME and could make the choice to take to their beds. It is still relatively unknown and, back in 2003, it took me over a year to get a diagnosis from the main-stream medical world. There is a still enormous amounts of research to be done, but it is agreed that it can be caused by a virus called Epstein Barr, which relates to Glandular Fever. I suspect I contracted the virus when I worked in Egypt in the late 1990s, but it is possible that it had lain dormant in my system from my teens when I did suffer, luckily relatively briefly, from Glandular Fever. Trauma can also trigger it, so can excessive exercise and stress. I was probably swimming too much and I was certainly stressed: caused by my approach to daily life and my desire to constantly prove something to myself and the world.
What I do know is that I completely stopped functioning. My mother drove down to London and rescued me, putting me to bed in her Lincolnshire cottage surrounded by jasmine flowers, and looking after me for six months. She brought me food, cats, audio books. When the summer began, she made an ‘outside bed’ for me (see picture below), and I would spend the time lying on this bench in her wild garden watching woodpeckers and working my way through the audio versions of nineteenth century classics, most of which I had already read. I discovered new novels too including the not-very-cheerful ‘Jude the Obscure’ which has haunted me ever since and was a poor choice of reading for someone who was ill. One afternoon when my dizziness and vertigo had stopped for a while, I was embroidering the face of a cat (not literally) and it occurred to me that I had turned into a minor Jane Austen character who Suffered from Nerves. All I was lacking was a series of coloured bottles full of potions at my side and on my lap, a small irritating dog who nipped the fingers of those who attempted to pat him.
I couldn’t walk, because if I did, I would feel as if the floor was going to come up and slap me in my face. The room would start to go around, I would feel sick and then I would almost pass out. I would always start crying after what I called a dizzy attack because the loss of balance and grounding in the world is very unnerving. I was exhausted all the time, so slept for about 18 hours a day. A shower, a conversation, the consumption of a meal would require a sleep immediately afterwards.
And this was not me. I was the one in the swimming pool who was doing 100 lengths of crawl every day; the one who when someone fell over in the Atlas Mountains, when I was leading trekking groups, ran at altitude to find out what was going on; the one who had just begun a career as a teacher and was throwing everything she had at this wonderful but draining new experience.
Until something in my body simply said, Stop. Unless you take some deep breaths, you will no longer be able to breathe. Stop.
Stopping is frightening. We don’t often stop; we don’t haven’t have the opportunity to stop. But for me, much of the time in this period I was too ill to think. I did think one night, however, when having been told that a brain tumour needed to be ruled out, my face went totally numb within hours. I knew rationally that this was something my brain had induced through suggestion and fear, but the irrational side (which has always been fairly active in me) took me into dark places.
But stopping is necessary sometimes too. And as my body slowed down, so did my head. I discovered meditation and yoga. By listening to audio books, I slowed down my consumption and absorption of fiction because no one can read out loud at the same speed that I used to read in my head. Reading is and always will be an inevitability of my life but reading at the speed I did before getting ME (five novels a week or so) was perhaps indicative of my entire approach to life. Absorb all, experience all; and then, finally, collapse. I now see my six months in Lincolnshire as a strange but special loop out of time, when I disconnected from the day to day and – for swathes of time – even myself: I rested for the first time in my life.
Getting a diagnosis was a painful journey. The rather baffled doctor in Lincolnshire tentatively called it Labyrinthitus, which is a virus which affects the inner ear. I had all the symptoms but various others which he decided to ignore. He signed me off work a month at a time and when the illness didn’t shift, I began having tests for illness with names that poked me awake at three in the morning. Nothing. The neurologist helpfully patted me on the knee, told me to throw my walking stick away and get a boyfriend.
It wasn’t until I had been back at work for four months (very part time) and had had a relapse that I finally listened to a friend of mine – Jon, to whom I am ever grateful. Jon had also had a mysterious illness but had been cured. I should go and see his doctor in Newcastle, he had kept telling me. By this point, I was willing to try anything. I had been bed-bound again for six weeks, this time in London with friends popping in with shopping bags full of food. I booked the train ticket, got a taxi to Kings Cross, a taxi from Newcastle Station and arrived, shaking with fatigue and nausea, at a house in a smart but bland housing estate about 20 minutes outside the city.
I spent three hours with Dr Espinet that afternoon. He is a qualified doctor and at the time practised as an anaesthetist in Newcastle. However, his mode of diagnosis and healing will make the scientists among you squirm and demand evidence. I cannot give it to you, only anecdotal evidence, and for me, in this particular case, that is all that matters. He used what he called bio-energy mapping, which involved unblocking locked energy and he had a firm belief in the relationship between mind and body. He gave me a diagnosis and once I had it, I had a way forward. It is possible that what Dr Espinet did was a placebo but I doubt it. He commented on certain aspects of my medical history about which there was no way he could have known. He was certainly a healer and just by being taken seriously by this man, I felt better. He charged little and I did what he said, taking various herbs and tablets, and going on a special diet. And whatever he did, even in those first three hours with him in Newcastle, worked: at the end of the session, I realised I had to get home. I got to the train station and since my train was about to leave, I ran. I ran over a bridge for a train despite having not walked further than a few metres for over a month, and after sitting down, I realised what I had done. I knew that Dr Espinet was going to help me.
A few months later, after having returned to work part-time once again, I saw a clinical specialist in ME in London. He formally diagnosed me and put me on antidepressants, one thing which research has shown does alleviate some of the symptoms of the illness. Meanwhile, Dr Espinet’s magic was working too, and I was gradually getting better, taking little steps forward at a time. I didn’t work full time again for some years. When I did I found myself becoming exhausted again so I went back to part-time after two years: life is too short and my priority was to stay well, no matter how much I loved my job.
The experience of ME affected me in so many ways. I gave up smoking, one day, after years of trying. This time it was easy because I knew it would have immediate effects. I started using audio books, which I have continued to do. I gave up caffeine and when I started drinking it again, I did so with moderation. I learnt to say ‘no’ sometimes at work when my natural inclination was to always say yes. I began going to Yoga regularly, choosing classes which focused on breathing and the spirituality of Yoga rather than hard-core physical postures. I spoke to people about my experience, admitted that I couldn’t always face social events because I was feeling too tired or, sometimes, because I was nervous of feeling too tired. I get warning signs now when I know I have pushed things too hard. Dizziness flares up; or the nausea returns. I try and listen, and when I don’t, I have to rest for a bit. But I don’t see this as ME anymore; I see it as an opportunity to stop and reflect.
One of the most incredible parts of being ill was the process of getting better: observing myself being able to do things I hadn’t quite imagined being able to do again. Getting the tube for the first time, walking to work, going into busy over-stimulating shops; all things I had always taken for granted. And I have gone beyond that now, encouraged by my partner: I SCUBA dive, I ski, I mountain bike. These are all things I have learnt to do since being ill and I marvel at the fact that I can.
The best moment of my recovery, however, was when I went swimming again for the first time, two and half years after my collapse on Helvellyn. I spent those three lengths, for that was all I allowed myself to do, crying into my goggles, thus defeating their purpose. And if someone had asked me why I was crying, I would have said, ‘Because I am swimming again and I never thought I would.’
This blog article was inspired by two people: my student Flora who asked me to tell her about my experience when she read a post on Facebook where I described a few of my symptoms, and by an incredibly courageous woman called Lynn K. Hall who I encountered via the Mslexia Memoir Competition. Lynn's memoir was short-listed and is about, amongst other things, her experience of living with constant agonising headaches, caused by an attack of meningitis when she was eighteen. She keeps an inspiring blog, recording her determination to live through and beyond her pain by climbing mountains.
Sadly for me and British ME sufferers, Dr Espinet disappeared off to Australia where he is doing very well.
10/7/2017: I am going to be walking the Camino de Santiago de Compostela in August - November 2017 and will be raising money for the ME Association. If you feel inspired to help raise awareness of ME and to help find a cure, then please consider going to my Justgiving Fundraising page to find out more and even... to donate! Many thanks!