We Are Death, Warmed Up
Originally published on this site in November 2014.
It is torture, of a kind. The unrelenting jab of needles into the spine. The vice clamped to the temples and tightened. The syringes slowly draining blood from the thighs, injecting concrete into the calves. Poison swelling in the stomach, pumping to the veins, tying knots in the guts.
You shake, but not in terror. Even the twilight is too bright. Movement sets flotsam and jetsam tumbling about the head; simply sitting up can be a struggle – postural hypertension sending you giddy. Sights and sounds take longer to travel to the brain, the neural pathways fogged and furred with white noise and static. You are death, ever so slightly warmed up.
This is M.E. as I sometimes experience it, and I’m not one of those acutely affected. I only occasionally feel this ill – usually after any kind of socialising or travelling, or perhaps following a sleepless night – but for some people this is a daily occurrence; indeed, for many it’s a lot more severe and unrelenting. I’m relatively lucky, in the way that a man who has lost one leg is luckier than a man who has lost two.
The symptoms – or sensations – outlined above are some of those I experience when at my worst, but at my best I can walk the dog over relatively short distances, and resemble a normal, fully-functioning human being, so long as I’m not asked to do anything that involves strength and stamina, or standing up for too long. When I’m well enough to be out, I look well enough, full stop. But I’m often somewhere in between the two extremes. I rarely feel good, but sometimes I’ll notice an absence of aches, pains and fatigue.
M.E. is a complex condition with many varied symptoms. A recent statement from the Stanford University School of Medicine said of the illness: “Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.” (For more on the science behind M.E., see the Postscript at the foot of this piece.)
The unpredictability of the condition – which always strikes after exertion, but sometimes flares up for no apparent reason – makes life hard to navigate. It messes with your mind, blowing hot and cold; giving hope and then withdrawing it. You think you might be getting better, but you’re simply having a good day. You fear you might be getting worse, and suddenly it’s hard to remember what a good day feels like. Conversely, on your good days you forget what it’s like to be ill – so you push things, just a little – and then it returns, and you kick yourself for blocking out the suffering; like a woman forcing out a second baby, having screamed Never again! during the birthing of the first.
And this is just me; not someone who is bed-bound or only able to get about with someone pushing the wheelchair.
Much to my frustration, I don’t know how I became ill. For some people M.E. hits them like a speeding train at a level crossing. One day they’re fine, the next they are wiped out. Mine, however, approached more stealthily, like a carbon monoxide leak: the slow, insidious creep, spreading over me in imperceptible increments, until, after a number of years, I found myself faded and foggy. For the longest time I knew that something wasn’t right, but neither I nor a number of physicians could put their finger on it. Still only in my mid-20s, I was more tired than I should have been for someone so athletic; had more muscle aches and head pains than anyone I knew; had a sleep pattern that had gone haywire; and, to my horror, experienced rapid hair loss (although it transpired that that was merely the onset of male pattern baldness).
When did the problems start? Well, I was born with clear immunological issues. I had asthma, eczema and various allergies, none of which, as a baby, were put down to my imagination. Playing sport several times a day throughout my childhood kept me fit and healthy – if occasionally reaching for the inhaler – but I recall lethargic spells, and according to blood tests, it seems that at some point I had an undiagnosed bout of glandular fever.
I spent my teens and early twenties being fed course after course of antibiotics; at a conservative guess I’d say 50-70 different prescriptions, some for tonsillitis, some for chest infections, some for sinus infections, but many for what were probably just heavy colds and upper respiratory tract viruses, and therefore not treatable by the various ‘cillins’ eagerly pushed my way. I’ve probably had just two courses in the last 10 years, but I fear the damage was already done.
There’s only one single event I can recall that might have been a trigger. In December 1990, at the age of 19, I awoke at 3am with an asthma attack so severe I couldn’t breathe; as hard as I tried, and without a hint of exaggeration, I felt that I was getting no more than 1% of my normal oxygen intake (try sucking on a blocked straw for a vague analogy). My flatmates, awoken by my panic, rushed me to the nearby infirmary, where I was nebulised, given oxygen and intravenously administered steroids. I recovered, but only after a serious chest infection. I sometimes wonder if this was a contributing factor.
By the time I was in my early 20s I started struggling after playing sport, but could still take part. Weirdly, I noticed that my vision was much worse on the days when I had less than eight hours sleep (and eye-muscle problems are also symptomatic of M.E.). Around this time I found that I could no longer tolerate alcohol – I wouldn’t feel drunk, just strangely ‘foggy’ after half a pint, as if slipped a mickey.
I spent some time in my mid-20s as a semi-professional footballer, but could never quite get as fit as I felt I should be – as fit as I remember being – and between games I felt horribly lethargic, to the point where I was unable to train properly. Often I felt ill for 48-72 hours after a game, which included a three or four hour sleep within an hour or two of the final whistle. However, if I missed midweek training I felt less ill on match-days, but this was clearly not sustainable in terms of my general fitness. Needing to drink two Red Bulls in order to play football at the age of 25 was not a good sign. Within three years I’d have kicked my last football, at the age of 28.
Over the past decade and a half I’ve given up, in stages, most of the things I enjoy, because the payback isn’t worth it. With every passing year I am able to spend less time at the computer, writing, before my head fogs up and my eyesight blurs. But at the same time, the distraction helps keep me sane, and it pays the bills.
By comparison with some I am lucky, but I have become fairly reclusive, and definitely feel isolated. I work alone, from home (albeit running a website with a great community). It’s tough to maintain a social life and keep up with friends; while relationships, as well as being rewarding, can also be draining and doubly difficult. If I do a few hours’ work during the day I’m usually barely functioning by 6pm. If I ever want to go out in the evening, which is rare, I have to keep away from a computer and spend the day resting. Indeed, I feel analogous to my faulty iPhone 5, which needs several charges a day. It can do the basics okay, but try anything that requires proper processing power and the ‘I need electricity’ warning appears.
With M.E., everything has to be planned; to be spontaneous is to jump from a plane without a parachute, eyes blindfolded, and with no idea when the impact will occur. The crash will come, sooner or later. (Probably sooner.) You’ll be spreadeagled on a bed again before you know it. For those who are severely affected, just getting to the toilet can represent a true daily achievement. No one chooses to have this life. None of us are happy existing like this, because none of us are lazy or lovers of pain.
Serious M.E. is suffered by people alone at night, their body clocks set to a far-flung timezone. They sleep fitfully, or not at all, and then lapse into unrefreshing daytime slumbers punctuated by fugue states. It is a ghostly illness, all but invisible to the eye, and eager to turn skin to an equally spectral shade due to lack of sunlight. It takes healthy, active people – almost always those with great drive and motivation – and plants them as bed-potatoes. They themselves become ghosts, seen only by those who enter rooms darkened with blackout blinds. These are the lost people, obscured in the shadows. They feel helpless, hopeless and depressed.
And while my condition is not as serious as many sufferers I know of, it’s still very dispiriting. Indeed, it’s depressing.
But we are not merely depressed, with some people thinking that’s all it is; we simply have a natural reaction to frequently feeling awful, and get understandably low from giving up most of the things we enjoy (and in return, benefiting from none of the natural highs of endorphins and other brain chemicals). I would give up my career as a writer in a heartbeat to play football again (the one activity in which I’d totally lose myself), or do more energetic pastimes with my son, or to visit my family in Australia. But at least I am not housebound, or worse, bed-bound.
We’re not lacking energy and motivation because we’re depressed; we’re depressed because even the basics can be a drain. Our condition doesn’t go away when we are happy, or on those occasions when we’re able to have fun. And yet obviously anything in life seems a little easier if it’s enjoyable. Adrenaline will get us through on certain occasions, but the bigger the rush the worse we feel afterwards.
With inactivity our bodies grow deconditioned, but the alternative – to exercise, even gradually, to a set activity plan – is painful, and often leads to exacerbated symptoms. I began such a plan in the autumn of 2013, but more than a year on I’m not sure it has helped. I’ve had a few days when I was certain it was of benefit, and plenty more when it felt like a grave mistake. Overall I feel ambivalent about it.
Over time I managed to incrementally increase activity, convinced that I would get better, but it led to a worsening of pain and headaches, less refreshing sleep, and a return to the constant sore throats I had when I was younger. Every forward step in getting fitter – and I did feel some improvement in that sense – led straight to an immediate backwards step. I was getting fitter, but paradoxically felt more ill. It felt akin to doing fitness training in a gym next to chemical factory that has sprung a leak; the muscles and stamina improve, but the skin burns and the lungs inflame.
To ease off the activity plan is to lose conditioning once again, and with a loss of conditioning come symptoms similar to those of M.E. – and the vicious circle is complete. If you – the healthy reader – do nothing but lie in bed for a month you will feel like we do, grow weak like us. Just look at the astronauts returning from months on the international space station, and how they’re too weak to walk. They have to be carried from the return module like newborn babies. But if, like them, you try to get better, you will. We won’t. We know, because we’ve tried.
If, as a sufferer of M.E., you can avoid stress, depression, anxiety, poor dietary habits, late nights, alcohol and overexertion then you might fare relatively well. But how do you live without those pressures? Preparing healthy food takes more energy than zapping a microwave meal. If you work you will suffer from stress, and if you don’t work you will have no money, and suffer from stress.
The last time I claimed Incapacity Benefit I was asked to touch my toes, and reach into the air. Could I walk 400 yards? And finally, could I climb a single set of stairs? Such simple questions proved I was entirely fit to work, and the benefits were denied. Which would be great, if a day’s work was as simple as touching my toes, reaching into the air, climbing one set of stairs and then walking 400 yards.
Since then I’ve managed to make a living as a writer, but only by working for myself, at my own pace; and even then it took many years to make it pay. But running your own business is stressful, and while I am able to control some aspects of my work output, I can’t escape a lot of the difficulties that come with the territory. It also doesn’t help that I’m a creative ‘obsessive’, in that I need to be doing things with my brain otherwise I don’t feel like I’m actually existing. Writing a novel has helped me retain some motivation, as well as providing some catharsis through art, but it has come at a cost.
At times I feel like a cardboard man propped up by strong coffee, but its power to revive wanes with each subsequent morning, and before long it just brings tremors and headaches, and zero boost. In the days leading up to some social activity I’ll lower my intake, and spend the time resting (albeit with a guaranteed migraine); and then reintroduce the caffeine to boost my way through the event, along with natural adrenaline. But in general it gets harder. I’m not in my 20s anymore.
At times it’s easy to forget that ‘normal’ people feel tired too, although, of course, they often like to remind you. The key is the word chronic in Chronic Fatigue Syndrome (although we don’t like that name as the illness is not just about tiredness). No one says to someone with arthritis, “Yeah, but I also get aches and pains.” Everybody gets aches and pains. That doesn’t mean they have a chronic condition. Everybody gets headaches, but that doesn’t mean they have something seriously wrong. No one says “I get headaches too” to someone with a brain tumour. People with M.E. get tired, and get headaches, and have a lot of pain, and their experience of them is frequent and ongoing.
None of this is written as a plea for pity; merely a request for some understanding of perhaps the most misunderstood of all illnesses. There are people far more acutely affected than me; many of them with other illnesses, but also many with a horribly debilitating severity of M.E.. But they’re often not able to write about their plight, perhaps because they’re too poorly, or not a wordsmith, or simply have no platform on which to tell their story. I can share a taster of what it’s like, but unless you are feeling the same symptoms at the exact same time, it can be difficult for anyone to appreciate what someone else is going through.
How do you imagine a pain greater than you’ve ever experienced, or a torment wilder than your own mind has endured? I’m not sure that you can.
Postscript: Research Findings and Hope?
Researchers running trials are finding new evidence of M.E. in patients all the time, even if no single diagnostic test yet exists. In the past couple of weeks, three things have stood out to me.
A recent medical article on M.E stated:
“Studies on metabolism and CFS [M.E.] suggest irregularities in energy metabolism, amino acid metabolism, nucleotide metabolism, nitrogen metabolism, hormone metabolism, and oxidative stress metabolism. The overwhelming body of evidence suggests an oxidative environment with the minimal utilization of mitochondria for efficient energy production. This is coupled with a reduced excretion of amino acids and nitrogen in general.”
“Compared to healthy individuals, people with CFS have a diminished amount of white matter in the brain. White matter is composed of nerve fibers, which help connect the neurons in the gray matter that actually process information. CFS is believed to be associated with inflammation, which would cause this effect.”
There are loads of small studies finding such details, but as yet it hasn’t led to a completion of the bigger picture.
Finally, Dr Ian Lipkin is undertaking research in the hunt “for the causes of ME/CFS in the gut “microbiome” – the bacteria, viruses and fungi in the digestive system. Dr Lipkin has been described as “the world’s most celebrated virus hunter”, working at “the world’s largest and most advanced centre for microbe discovery and diagnosis at Columbia University in New York.”