Get Well Soon

by Nick Duerden

  I find I have to read this paragraph twice, just in case I misread it the first time around. I hadn’t.

  The article suggests that 600,000 people in the UK currently suffer from ME. Fifty to 80 radicals, then, is a tiny proportion of that, and so hardly representative. You can find crackpots anywhere. Nevertheless, and largely due to articles like this, sufferers tend to be tarred with the same brush: we are crackpots, all.

  There is no single agreed-upon way of treating the condition. Different experts come at it differently; it is up to us to sift through them all and decide, for ignorant reasons or enlightened ones, which suits us best. This can take years and cost a great deal of money.

  Some specialists look to early childhood trauma as a potential root of the problem. Others do not. Some say you must rest, listen to your body, ingest as many vitamins as possible, do yoga, meditate. Others say you have to fight back, regain control over your mind, and your body will follow. It is a mental disorder; a purely physical one. You can infect others with it, can catch it from unprotected sex.

  Amid these competing voices, there appears to be at least some concrete evidence: ‘Your personal history does play a significant role to later abnormal stress responses,’ Professor White will say to me when I meet him. ‘If you have had a childhood adversity of some kind, then it changes your stress responses as an adult.’

  In other words, it is the way we cope after having fallen ill that determines the path of our recovery.

  ‘We now know the epigenetic response,’ he’ll say. ‘Childhood trauma doesn’t change your DNA, but it does change the expression of your genes, particularly those that determine your stress response, and particularly your cortisol response.’

  Cortisol is our main stress hormone, and people with CFS have 40 per cent less cortisol than those without.

  ‘This means that your adrenal axis is low, which means that when you have to deal with the added stress – a persistent case of adrenalin, say – then you do not always cope quite as well.’

  Fatigue, then, is merely one of many paths we can go down when we burn out. It remains chronic if we stress over the illness unduly, because the more we stress, the longer we will stay ill, and the longer we are ill, the more we stress. In many cases, it is difficult not to. Burnout is increasingly common these days, in some cases unavoidable. A great many of us will eventually burn out in one way or another. There are many manifestations to it: heart attack, stroke, aneurysm. There is a suggestion that certain cancers are the result of excessive, prolonged stress. In most cases, the way back is slow, and requires methodical planning, and occasionally a complete overhaul of one’s lifestyle. Some people find God, or spirituality. Some make a full recovery, others don’t. Those who do can be accused by those who don’t of never having had CFS in the first place. Long-time sufferers, at least those portrayed in the media, can be bitter – but then who wouldn’t be after years of illness?

  However you choose to navigate it, it will be complicated, and will require very great levels of attention. Learning a foreign language would be easier, and quicker.

  But which way to turn? There are so many competing voices. When your GP isn’t on hand to offer a swift remedy, then you are forced to look elsewhere – specifically, into the world of alternative medicine – new waters for me. There is a proliferation of opinion here, and all manner of unlikely-sounding treatments are advocated. Some of the advice overlaps, plenty doesn’t, and alternative practitioners tend to contradict one another vocally. The NHS can endorse none of them until concrete proof of a cure is offered. And there is no such proof yet.

  For anyone newly initiated into the world of CFS (but still in denial), this can all be wildly disconcerting. I have not been properly ill before and, having been effectively dispensed with by the NHS, it seems I now have a choice on what to do and whom to follow. But I have no idea what I am doing, nor what I should be doing, no map, no single guide. It’s bewildering.

  And they say ignorance is bliss.

  Three

  Arranged on the kitchen table before me are pills, vitamins and a variety of purportedly energy-boosting supplements wielding serious names: Vegepa, D-Ribose, L-Glutathione, Acetyl L-Carnitine, Transdermal Magnesium. I have heard of none of these before, and when I look them up – and learn that one of them, the Glutathione, is an antioxidant preventing damage to important cellular components caused by reactive oxygen species such as free radicals and peroxides – I have little clearer idea of what good they might do. Vitamin D3 I have heard of, or think I have heard of, but not Coenzyme Q10, or Siberian ginseng, which by all accounts is preferable in this case to Korean ginseng, though I couldn’t tell you why. There is also echinacea, selenium, chromium, vitamin C and niacinamide, and some BioCare multivitamins and minerals. They make for quite a haul, and lined up together they fill half the table.

  It is breakfast time. The children file in and appraise the table quizzically.

  ‘What are they for?’ Evie asks.

  It’s a good question.

  As my fatigue worsens, Elena has become my carer, spending hours on the internet during her lunch hour at work and each evening at home, trying to find a cure, a remedy, the best treatment. There is an awful lot of information online, inevitably too much, and it proves a muddy topic, endlessly argued over, ridiculed and hotly contested, everybody with a strong opinion. It seems that any practitioner with a specialism in the field of fatigue is subject to criticism and official complaint. And so Elena has to read and reread, then cross-reference, and brace herself through the many hundreds of online comments from around the world while trying to maintain a cool head. All the proffered advice here has been both hailed for its effectiveness and derided for its quackery, the practitioners behind it either worshipped as gurus or scorned as charlatans. All of them are private and costly, their remedies time-consuming and not guaranteed. But then this is my new world now, and the path stretching out before me is riven with crazy paving.

  The kitchen table with its pills and concoctions, then, is the result of Elena’s findings to date, the advice that resonated most – namely, the recommendations of a certain general practitioner who, three years previously, had been struck off the NHS register after she continued to treat the condition outside of NHS guidelines. I question Elena’s decision here, but she assures me that she has waded through all the hysteria prompted by the GP’s sacking to learn that the doctor was quickly reinstated, and that from what she can see, the woman knows what she is talking about. Much of what Elena has read online has left her suspicious or else confused; this is one of the exceptions. According to this doctor, in the first flush of the condition, the body is still struggling against the virus. Before we can treat our own individual reaction to it, we have to get the body back to its optimal potential. It needs to recover and renew, and, Elena explains, these pills should help do just that. I am to take them daily, some on an empty stomach, others with meals, or after meals. Some look big enough to comprise a meal in themselves. Together, over time, it is suggested, their combination will restore within me all the energy the virus has depleted. I will feel their effects, and, with them, I will start to feel better.

  It seems impossible I will ever be able to remember which to take when. Elena suggests a multi-pill dispenser that does the arranging for us. I refuse this on principle. A multi-pill dispenser brings with it the kind of connotations I don’t want to consider just yet, of the elderly, the long-term ill. Instead, I get a felt-tip pen and write easy-to-read instructions on each, then arrange them on a cupboard shelf of their own, out of the children’s reach.

  Alongside the pills, it is also recommended I take something called transdermal magnesium, which the doctor has dubbed ‘Magic Minerals’. Minerals are essential for the building of strong bones and teeth, for turning the food we eat into energy. Minerals can be found in meat, cereals, dairy products, vegetables, fruit and nuts. But right now I need an industrial amount, and so the ‘Magic Minerals’ come in
an industrial-sized container. It looks like, and has the consistency of, sand. A heaped tablespoon, I read, is to be dissolved in tap water or juice, then swallowed. The label does draw attention to the fact that some people do not like the taste of the minerals. They can find this substance too unpleasant even to swallow. It is better for health reasons to swallow it, but if it proves too much for the sensitive palate, then there is always the transdermal option instead – spreading it on the skin, which will absorb it.

  The whole thing is daunting, offering as it does concrete proof that I am really not very well at all. I need to make light of things, for myself and my audience: two intrigued children and my concerned wife. I mix an experimental glass, the powder making the water cloudy and thick. It is odourless. I offer it around. ‘A health drink,’ I call it. ‘Like a smoothie, more or less.’ Evie adopts a fierce expression, and pronounces: ‘No.’ Amaya allows the glass to touch her lips, then promptly retches, and passes the glass to her mother. Elena, always stoical, the calm in any storm, takes a gulp. What happens next is interesting. Her face folds in on itself as if lemon juice has just been squirted into her eyes. The bones in her neck become visible as her skin is pulled taut in a grimace. A strange noise emerges, possibly from the nostrils, and she fumbles to put the glass onto the nearest surface without spilling it. She sticks her tongue out and peels back her lips. The children look at her in horror. Once it is clear she isn’t going to die, they laugh uncertainly. Then they all turn to look at me.

  None of this bodes well. But I am determined to do whatever is deemed to be good, even if it is disgusting, and so I drink it. This is, after all, what the label suggests – the label written by a doctor who, I recall now, had initially been struck off for her unconventional methods, but no matter. Onwards. I drink, and I swallow. I react the way Elena did. The taste is almost beyond description: thick like olive oil, slick like petrol, and dauntingly strong, with an undertow of fungus. Every swallow prompts a gag, and a fatigue-defying dash to the toilet because surely I’m going to bring it up again.

  ‘Maybe drink it slowly, in tiny sips, over the next few hours?’ Elena gamely suggests.

  For a full week, I do this. The glass sits threateningly on my desk, and every 15 minutes, I stop working to sip, gag, retch. But a week is all I can manage. One glass is enough to make me feel sick all day – it sits in my stomach like a tide that refuses to go out, and bubbles – and if seven days produces no discernible improvement in me, then it’s too slow, and I’ve had enough.

  By week two, I begin to ingest it transdermally. The experience offers little improvement. Its grainy, sand-like quality is not readily soluble, and so you don’t so much smear it into the skin as scratch it in. Once applied, it forms an oily sheen which, the label suggests, should be allowed to settle for at least half an hour. I do it first thing in the morning, before my shower, then slip on an old T-shirt that soon becomes irreparably soiled, and make my way down to breakfast. I cannot lean back on the chair because the T-shirt is slick and sticky, and so I eat my toast sitting unnaturally upright. As it dries, it tightens and seems to pull everything upwards, like a cosmetic surgery procedure. If my belly button is below the waistband of my sweatpants before I apply it, then afterwards it’s above.

  ‘Your T-shirt is leaking,’ Amaya tells me, a concerned look on her face.

  After half an hour has passed, I can finally shower and rub the stuff off and into the drain. I repeat this process every day for months on end, and every day I think it best not to question too much what it is I am doing here, and to what end. I have had to put my critical faculties on hold, and content myself with the necessary fact that for the time being I must do precisely as I am told.

  The fridge has been filling up, meanwhile, with red meat and broccoli. I have never been particularly fond of beef, finding it difficult to digest, and I would never eat it for lunch, but Elena insists I need the protein. The internet says so. So, no more quick sandwich in front of the TV, but rather a flash-fried sliver of bleeding cow, a fried egg and several stalks of green on the side.

  Elena is now spending a lot of time on the computer, reading up on my condition. Of all the conditions to have, this is one of the less dramatic ones. There is little pizzazz to it, no fanfare, no ceremony. You are horribly, comprehensively tired, and that’s it. It doesn’t appear to be particularly progressive; it doesn’t kill. There is no lump that needs excising, no radical treatment that, if successful, could do wonders for a doctor’s success rate. Doubt over prognosis abounds, as does conflict over treatment. Despite the course of pills I am on, having been diagnosed by a registered NHS doctor, there is no course of pills recommended by the NHS.

  If you can pinpoint why you might have developed it – if, that is, you are not one of the four in 10 to be misdiagnosed in the first place – then this might help with the subsequent treatment. Elena and I talk endlessly about this, wondering why this might have happened to me. What is its root? Why am I unable to answer the question the immunologist asked me, and the GP before him, relating to emotional fallout? Has there been any which I might have missed? Wouldn’t I have been aware of it? Is it possible to be depressed without realising it?

  Later, Professor Peter White will tell me that the majority of sufferers do not, in fact, suffer from depression at all, but before I meet with him, I am told that depression is often considered a key factor.

  So I navel-gaze in an attempt to spot it lurking somewhere within me, aware that denial wields considerable power. I grew up with a mother prone to depression, though I always believed her depression to be more circumstantial than clinical. Either way, I got to know the signs, how it developed, how long a bout would last. I do not think I have ever had anything similar. I have all manner of daily anxieties, of course, but these to me are low-level, manageable, the everyday stuff of life, and certainly nothing that would result in something as powerful as this. Otherwise, everything is mostly fine, unspectacular, normal. If anything, I have always considered myself unaccountably lucky. I have been gifted with a wife and children whom I love very much. I have a job I respect and still covet, grateful to be able to live and breathe it. It has allowed me to see a lot of the world, and meet a lot of strange, fascinating people. I live in a nice enough house in a nice enough area, though naturally I would like a bigger house in a better area. I have a TV with a Live Pause function that never ceases to impress me. I sleep well. I wake happy. Don’t I?

  Things could of course be better, much. Life could be improved in any number of ways. How much time do you have? I could be taller, stronger, fitter, with 20/20 vision. I could have more work, better pay, a regular salary like normal people, a turn of phrase like Clive James’. Editors would email me rather than waiting for me to email them, and would fight for the privilege of commissioning me. I could have been bequeathed, by some phantom aunt, a trust fund, buying me that most elusive of things: financial security. I could have more friends, better friends, the kind of children who liked what their father cooked for them, and who ate it without complaint. I wish I were more assertive, more confident, less timid.

  And then there are the regrets. I wish I could have helped appease the rift between my mother and my grandmother before my mother died. I am still distraught, 30 years on, that I didn’t follow 16-year-old Ruth Gibson up to her empty dormitory on our French school trip when I was 15, an invitation she would not make twice despite my pleading. I always wanted to travel on the Trans-Siberian Express, and haven’t done yet. I regret letting certain friendships slide. I really shouldn’t have bought those G-Star cargo trousers. I wish I’d run the London Marathon, just once.

  Offer me a wish list that would make life better, and I will swiftly fill it. But mostly, I can’t quite believe my luck. Or couldn’t.

  Try as I might, I cannot find any obvious contributing factors. And so perhaps my problem is less psychiatric and more fundamental, more basic. Perhaps, for whatever reason, I have simply been wired wrong, and don’t posses
s the ability to cope with it all: with work, with parenthood, and with the endless pressures in the maintenance of both. I have somehow skewed my work-life balance irreparably, my DNA faulty, substandard. Everybody else can cope, but not me. I could, for a while, and I managed well enough, but then I crested over into middle age, and into less of a crisis than a full-on meltdown.

  Is that it?

  Did I ride too much, and for too long, on my adrenalin, always rushing, rarely resting, overlooking the importance of pacing, of relaxing, of quality of life? Hindsight tells me that my body clamoured for respite, a slower pace, for years, decades even, but I ignored it. My body needed one thing, my brain craved another, and so the former ultimately gathered together its disparate parts and downed tools in protest.

  I should have been paying better attention. But I didn’t. Does anyone?

  I am paying attention now. I need to do something drastic, to acknowledge the diagnosis and to show – at least to myself – that I am belatedly taking it as seriously now as I should have then. And so immediately I stop chasing work with quite the same vigour I always have done.

  Being able to do this is disconcertingly easy. The freelance life is rarely a particularly secure one, which is something I have always considered one of its more appealing traits: it keeps you keen. If you do not chase work, the work very rarely chases you. There are thousands of me out there, all with the same drive, the same ‘YES!’ mentality. Elena has often accused me of putting work before everything else. She is right. I was nearly late for my own wedding because of a last-minute deadline that interfered with me putting on my suit.