How it feels to… treat your own mystery illness | The Sunday Times Magazine

Doctors had no idea why Nick Duerden was always exhausted — so began his three-year journey into the world of alternative therapy

PHIL HACKETT

A wise man — not Confucius, somebody else — once said that we spend the first 40 years of our lives trying to kill ourselves, and the next 40 trying to stay alive. I spent the first 40 of mine in a perpetual rush. Everything I did I did in a kind of fast-forward, as if in a race towards some imagined finish line. I ran when I could have walked, and when I walked, I did so briskly, much faster than my wife, who lagged leisurely behind. I worked a lot as a journalist, all the time — evenings, weekends, birthdays — and thrilled to every deadline met. I rarely relaxed, but then who needs to relax? I travelled for work, and came back jet-lagged. I was always tired, but it never seemed to matter. I slept well, recovered and ploughed on. After my two daughters were born, they passed on every germ that came their way, and I was perpetually sniffing, battling fevers, tonsillitis and, more than once, worms. Life took plenty out of me, but then life takes plenty out of everybody.

Though I didn’t yet know it, over Christmas 2011, age 42, things were approaching an emphatic full stop. Incrementally enough to take me unawares, it all became a bit too much. I was often worryingly tired, a full body sensation of absolute zero. The following month I took what, for a long time afterwards, I thought was my last business trip, my last daily swim. My last restaurant meal with friends, the last time I’d be able to drink wine; the last time I could walk to the corner shop without thinking about it, as if it were the most natural thing in the world.

One morning my body gave out. I awoke feeling 92 years old. I’d crashed. The doctor ordered blood tests, which came back normal. On paper I was in radiant health. And yet the slightest physical exertion was met with waves of exhaustion from which I failed to recover fully. I wanted a plan, a diagnosis, magic pills to perk me up and a light at the end of the tunnel. Instead, the GP referred me to the immunologist — and I shall call him Dr Dolittle, if only because for me that was what he did do: little — who read through my GP’s notes while asking about my life: any emotional fallout, a death in the family? What state was my marriage in? The lack of drama seemed to disappoint him.

“I must say,” he said, “you don’t strike me as particularly depressed.”

“No,” I agreed.

“Because that’s what we normally look for in situations like this, where the condition might be chronic fatigue.”

The two words fell with a thunk at my feet, like a dropped bag of potatoes. “Or ME, as it’s sometimes known, although the two are quite different,” he noted.

Of course I had heard of ME, or myalgic encephalomyelitis. Or at least the crude headlines. It was a relic from the 1980s, wasn’t it? Yuppie flu. Afflicts the highly driven, the rapaciously ambitious. All in the mind — not a medical condition per se? Later, on Google, I dredge up facts: that more than a million Americans have it, 600,000 Brits and rising. There are endless internet entries with the word “controversy”. A hardcore element of purported sufferers insist ME is caused by a virus, rather than being a psychological problem as prominent doctors have suggested.

It is a condition that makes a lot of people angry.

My doctor asks if I have considered yoga. And then he says: “Could you afford to stop working and live on your wife’s wages for a year?”

I look up at him, assuming he’s joking. I say I can’t. “It’s just a worst-case scenario, ” he smiles.

What I don’t know, leaving the doctors, and won’t for several years, is that I don’t have chronic fatigue at all, at least not the most recognisable strain. Because there is no pathology, four out of 10 cases are misdiagnosed, and I later learn my symptoms are more indicative of mitochondrial malfunction, the parts of the cell that generate energy no longer working. Quite why isn’t clear. But, irrespective of labels, I am dreadfully fatigued, and it is fast becoming chronic. My life over the next few weeks shrinks until it is paper-thin. I can barely manage the school run. My eyelids ache, something I didn’t know was possible. I crave oblivion, to switch everything off. If I could hibernate, I would.

I manage to keep working, taking on journalism jobs that can be done mainly by phone. I am lucky. Most fatigue sufferers aren’t able to work at all. Many experience a state known as a brain fog, an inability to focus on anything, even watching TV.

July, the start of the school summer holidays, is unbearable. The older daughter thrums with an energy I can see radiating off her. She is bored and cannot understand why we are not going out: swimming, to the zip wire, for ice cream. I haven’t even managed to walk to the corner shop in more than a month. I need to fix this.

I learn that there are more than 450 alternative treatments out there aimed at people for whom medical mainstream advice is wanting, and there is anecdotal evidence, among the controversy and scepticism, that some work. I decide to enter the world of alternative therapy, learning about practitioners’ methods, and inquiring — needily — whether they might be able to help me.

One motivational guru suggests that we could work together over the course of a single day, for as many hours as required, and I would leave cured. Cured. The lack of an exclamation mark in his email makes his claim all the more powerful; here is a man so confident in his abilities that he doesn’t need to shout to get his message across. “Interested?” is how he signs off. Yes! Of course! I reply quickly, asking him to address the only thing he has failed to mention: his fee. “Six thousand pounds. Let me know,” he replies.

It is at this point that I realise I am walking a narrow line that divides being desperate to get better and merely being desperate. I am not the latter kind, not yet. Besides, I don’t have £6,000 to hand. Over the months that follow, I manage to stave off desperation by exposing myself to what I hope is the best that alternative therapy can offer. It is all unexpectedly fascinating and, to my surprise, I encounter few obvious quacks, still fewer charlatans, but instead people who have battled their own health issues, often confounding medical types in the process, and emerged convinced they can now help others.

Under such guidance, I take pills and vitamins, I visit energy practitioners and spiritual gurus. I learn more yoga, and about the amygdala, that tiny thing located in the temporal lobe, most commonly associated with the fear response. For those suffering from long-term conditions that render them anxious, the amygdala is in perpetual overdrive. I undergo hypnotherapy and kinesiology. I speak to a Buddhist. I learn that the brain is plastic, that recently developed negative neural pathways can be erased and replaced by more positive ones. And I consult a noted psychotherapist, who makes me see that I am more complicated than I ever realised.

I try meditation. I am standing in silence in a living room alongside a man called Will who I have just met. It is meant to be a contemplative, even spiritual silence, but I spend it trying not to envy his Thames-side apartment, and failing. Will has his eyes closed and is singing something in Sanskrit. As he sings in a mellifluous, sinewy voice, I sneak a glance at him. He looks utterly serene. Will motions me to follow him in kneeling in front of a spiritual icon. This makes me a little uncomfortable. Then, so suddenly it takes me by surprise, he turns towards me and whispers something in my ear, his breath hot and intimate against my skin. This is my personal Vedic mantra, which I will say repetitively in my mind for 20 minutes twice daily.

Over the next few days, I learn how this works, and why. It is more scientific than spiritual, and from this I take encouragement. I am by now 36 months into my illness, and my daily state is still fairly catastrophic physical exhaustion. On the outside I look fine; inside I’m anything but. But when I leave Will after three days of instruction, I find myself doing something I haven’t done for three years: strolling alongside the river, over the bridge and towards a market I used to visit regularly. I am out in the open, among people, indulging in physical exercise, and I feel unusually calm and, if not quite serene — never that, not me — then happy and hopeful that something has been reinvigorated, the effect of all this alternative teaching swirling inside me.

Slowly, my health starts to improve. In the mornings I groan, get up and feel my age. It is still brutal, but I do it and my complaints dissolve by the time I reach the shower. Breakfast is no longer coffee but porridge, for its slow-release energy.

The morning I learn that I don’t have chronic fatigue after all is a curiously anticlimactic one. I’m at an NHS hospital where a doctor tells me I don’t have the right symptoms: depression, aversion to bright lights and loud noises. It’s more likely a T-cell deficiency, but unclear. “It’s good news,” she says, though there’s no straightforward treatment for it anyway. What do I care what it’s called? It is fatigue and I have come round to my new reality.

I spent a full year immersed in the world of alternative healthcare before deciding my plan had reached its natural conclusion. In a sense I have my life back. I have learnt a lot, and proved the online naysayers wrong. I may not be back to the old me just yet, but then who ever is?

“We change in fundamental ways every seven to nine years,” a Tao master had told me. This was news to me. I must have coasted ignorantly through my previous changes, but I am all too aware of this most recent one. And he’s right: I have changed. Thanks to my adventures in this hitherto hidden world, I am slower, calmer, more present. Less sceptical, too. Less fraught, less frenzied. More resilient. I walk, don’t run, in every sense. Life may feel more effortful now, but only because I am so assiduously aware of its constituent parts. And I have learnt, at last, to take care of myself. Often, this brings reward.

Adapted from Get Well Soon by Nick Duerden, published on Thursday (Bloomsbury £13)

via How it feels to… treat your own mystery illness | The Sunday Times Magazine | The Sunday Times

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