With permission from Ciara MacLaverty
A year ago I moved into a flat in a tree-lined Victorian terrace. My bedroom has glorious big windows looking across to a sandstone townhouse, which is used as offices by the Medical Research Department of Glasgow University. On the day of the move I got out of bed in my parents’ flat and they drove me 200 meters round the corner to my new flat, where I climbed straight into bed, surrounded by boxes and displaced spider plants.
If the office workers looked across in those first few days, they might have concluded I had the flu, thinking: “She’s barely been out of bed all week.” As the weeks passed they may have puzzled at my long hours spent in bed. “Maybe she has injured her back?” As spring eased into summer, I had to close the curtains on very bright days. “What kind of strange recluse can she be?”
If the medical administrative staff is anything like the students they work for, they will be told little or nothing about Myalgic Encephalomyelitis (ME), the illness that has kept me largely bed-bound for the past 15 years. I’ve lost count of the times medical staff has said to me: “I don’t really know very much about ME. You get tired a lot, don’t you?”
No. I’m 35 and haven’t been “tired” in the conventional sense of the word since I was a teenager. As anyone with severe ME will tell you, it has nothing to do with being tired and everything to do with being physically ill.
On the many occasions I am unable to watch TV or hold a conversation, sit upright or walk more than a few steps; it is not because I am “tired”. It is due to the fact that there is some catastrophic, metabolic imbalance within my cells that leaves me feeling poisoned and weak to the point of collapse. Muddying the waters further is the fact (sorely lamented by many sufferers) that ME is sometimes referred to as Chronic Fatigue Syndrome. Trust me, “fatigue” or “tiredness” don’t even register on the scale of how life shattering an illness this can be. Tiredness is to ME what forgetfulness is to Alzheimer’s disease.
I was at university myself when I was first struck down with ME. In a sentence, I caught the flu and my life was never to be the same again. At least I thought it was the flu. Afterwards I tried to carry on as normal, but I returned to my parents’ house at the point of collapse.
Rapidly I developed new symptoms. Symptoms I had never even heard of, or thought possible. I was bed-bound and when I tried to sit up I felt as if my brain was slopping around in a solution inside my skull. Light stung my eyes and I developed visual disturbances. By now I was too weak to stand up in the shower or wash my own hair.
A specialist for infectious diseases diagnosed ME. I felt momentary relief, because I knew I had something, even if it was something I had never heard of. There was no approved treatment and the illness might take three to five years before improving. Three to five years? The words triggered shock waves through me, followed by determined disbelief. I’ll give it months, I thought, but no way am I putting up with this for years.
I find it hard to believe, and to convey, just how nightmarish those first four years were. I began by constantly reminding myself how lucky I was that at least this wasn’t a fatal illness, but there came a time when the pain was so constant and so acute that I longed just to “slip away”.
Indeed, my body felt as if it was fighting for its life against some virulent poison, some tropical disease. I sweated and shivered with constant nausea and the sensation that my bed was shifting about, like a limo on a rough ocean. From the neck up things only got worse. The pain in my head lasted the best part of three years without a moment’s relief – no painkillers touched it. I remember banging my head against the wall above my bed to see if that would help.
Sensitivity to noise (or hyper acute hearing) is another phenomenon that really has to be experience to be believed. All noises caused a surge of acid-like discomfort in my brain. Not just the obvious jet planes and next door’s hammering … to this day, a hand dryer or polite applause still causes a wincing pain through my skull, a kind of low-grade electric shock sensation.
My parents nursed me all day, every day, but that often meant leaving me alone for hours at a stretch, as any social interaction cranked my symptoms up even further. The only thing that sustained us all through this living hell was the prognosis we were given at the time. As a family, we were told that I would get better eventually. I’m not sure whether any doctor actually used the word “recovery”.
By that stage we had heard and read about terrifying cases where people remained “permanently disabled” but these were the minority and too horrific to contemplate.
So from my bed-bound swamp I visualized all the things I would do when I got better. I would party all night, travel, study, get a career, find a husband, and have children. My illness would be past tense: a dinner party story that would leave people open-mouthed, but with a happy ending, of course.
The reality is profoundly different. Not surprisingly, I became depressed at my lack of progress and ended up in hospital. Six weeks of respite care and support eventually led to a slow turning point in 1991. I was able to take short trips outside via a wheelchair, then a walking stick, and finally I could walk unaided.
I passed many small milestones – first cinema trip, first shopping trip to buy new clothes (having lived in track suits and pajamas for four years), first day back at university. It took a further four years of part-time study to complete my degree; I did volunteer work with the homeless and the mentally ill, and finally made the leap to 12 hours’ paid work a week on a phone helpline. When strangers at parties asked: “What do you do?” it was such a relief to finally have an answer.
During the early 1990s I was never without viral type symptoms, such as stinging headaches four days a week. It was as if the symptoms and I had fallen into a grudging truce. The ME was my elephant in the living room. I tripped over it and routinely got squashed and inconvenienced by it, but I had managed to live a life in and around it as best I could.
All that changed suddenly on midsummer’s day in 1998. I returned from an open air pop festival with signs of a summer cold. The apparent bug passed within a day or two, but in its wake I felt the almost-forgotten “poisoned heavy fatigue” on a scale that I hadn’t felt for years. It shocked and frightened me, but I kept hoping it would pass, until weeks turned into months and it became agonizingly clear that, yet again, some biological catastrophe had occurred.
The déjà vu hopelessness of the situation left me reeling. None of the doctors could help. Rest stabilized but didn’t help the symptoms, while activity never failed to crank them up five or tenfold. Trying to get up and out resulted in searing headaches that left me vomiting.
The phrase “permanently disabled” rang terror through me and I learned of more and more ME patients who slid only downwards over the decades. There are hundreds of these horror stories – 13-year-old girls who require tube feeding; mothers bed-bound for a decade and counting, thirty something housebound husbands who will never work again…
It’s been more than four years since my big relapse, and my sense of injustice about ME still fuels my will to fight on for recognition of the scale of this terrible illness. Very little has changed for sufferers in the past 15 years and I fear it may take another 15 years before the levels of pain, suffering and daily impairment of severe ME are finally recognized as being on a par with end-stage MS, cancer or AIDS. We don’t die, but many of us are forced to live like this for decades.
Funding for research has been hampered for many reasons, not least a widespread lack of awareness about the serious nature of ME and horror stories such as these. Government funding has been virtually non-existent until recently, but even now controversy surrounds the direction of research, with the majority of money donated to psychological studies on the effects of exercise and cognitive behaviour therapy – a form of counseling. As a result, patients are often recommended to increase activities and develop coping strategies.
It might sound reasonable on paper, but for a neurological illness such as ME, it amounts to being told to exercise and think yourself better. If it was that simple we’d all have recovered years ago.
But I don’t want to end this article without some hope. I know of a handful of cases where improvement or remission has occurred even after years of acute ME. It’s rare, but it happens. Science has a way of catching up with the facts, if given half a chance and some decent funding. I just hope to God it will happen within my lifetime. And if that day finally arrives, the secretaries in the university medical offices opposite my window need puzzle no more over that strange girl who seems to spend her life in bed.
– by Ciara MacLaverty