‘No one could tell me what was wrong …’
After bouts of flu, Nick Duerden was left feeling shattered, all energy spent – but when he didn’t recover, doctors were baffled by what was really going on
Ididn’t see my illness coming – but, then, does anyone? Before, my life was as full and as hectic as anybody else’s, and I was juggling the ongoing perils of freelance work with being a stay-athome father to my two girls when, gradually but steadily, everything changed.
The illness didn’t announce itself the way illness seems to do on television. No discovery of a lump, no late-night A&E admission. Instead, it was flu, albeit a particularly nasty strain. Then several more until, two years after the first, a final bout from which I never fully recovered.
By the beginning of 2012, the year of the London Olympics, my body was no longer capable of reviving itself, all its energy spent, gone, leaving me with a perpetual exhaustion I couldn’t quite comprehend. The GP had no idea what was wrong; blood tests revealed nothing. I was that very worst thing: a medical enigma. “Hmm,” the doctor said. Nobody likes to see their doctor scratching her chin.
An immunologist wondered whether I might be stressed, or burned out? News to me, I told him. During our allotted 10-minute consultation, he announced that he could find no obvious signs of depression, which is what he would normally look for in cases where the diagnosis might be chronic fatigue. Trouble was, I didn’t entirely present, to him, as a typical sufferer: no brain fog, no heightened sensitivity to light and noise, no depression. Physically, I had flatlined, but mentally I remained as alert as I was ever going to be. Hmm, again.
Unable to tell me precisely what was wrong – it was a post-viral “something” – he nevertheless suggested a course he ran in cognitive behavioural therapy to help manage my psychological response to it, but when I tried to enrol I was denied because of that absence of the “black dog”. I was on my own with this one. I could have done, frankly, with a condition for which there was an obvious pathology; to be viewed, by mainstream medicine at least, as essentially untreatable only complicated matters further.
Much later, I was told by another immunologist that my problem was likely more of a physical one than a psychological one, a complication of the mitochondria – those cells in our body responsible for creating energy. Mine had malfunctioned. Quite why was unclear. And so I dealt with it by telling no one, keeping it secret, my confusion over it compounded by a sense of shame that I had somehow allowed this to befall me. Had I?
The more I came to accept that my illness was Nhs-resistant, the more I had to look elsewhere. And so I turned to what an increasing number of us are doing these days in response to the fast lives we lead in this modern world: alternative therapy.
Scepticism be damned, I consulted with spiritual gurus and energy practitioners, attempted yoga and largely failed to silence my neurotic mind with bouts of meditation. I spoke to Buddhists, to masters of Tao. And somehow, in the midst of this heady brew of curious new practices, I did indeed begin the slow but steady progress of getting better.
And, all the while, I worked hard to keep my home life normal, because my family were conspicuously not pausing for breath. Mercifully, they still needed me, and I them.
A couple of years ago, my closest friend suffered a subarachnoid haemorrhage. That was proper,
Holby City-style drama. An ambulance was involved; doctors in white coats. She had been my age – early 40s, late 30s in a good light
– but she had no children, and had the financial means to step off the carousel of adult life and start again. She left the city for the coast, quit her job and took up art therapy.
I was glad for her, and a little envious at her ability to reinvent, but then I realised I didn’t want a different life; I was still happy with my carousel.
When I first became ill, my girls were young, five and three, and I was desperate not to mire them in my troubles when we could be watching Cbeebies. As my outdoor life shrunk – enduring physical exhaustion meant I rarely left the house – the more I directed the scant energy I could still muster into being entirely present for them.
Those sweet little tyrants did much to test my new boundaries. At my most corrosively depleted, I was incapable of collecting them from school – a neighbour’s nanny brought them home each day – but for the next few hours, while my wife worked in her office like a normal person, they were mine alone. Homework, television, dinner. Then washing-up, bath, bedtime stories. When they finally let me turn the light off, I had to all but crawl to my own bed, merciful that we never had a third child.
If I succeeded in shielding them from my exhaustion, I could hardly do similar with my wife.
My poor wife quickly became the long-suffering kind, and bore the brunt of it, the confusion, the misery. Internet searches claimed that this kind of condition was “a living hell”. I concurred.
While I slept (and slept), she spent hours online seeking possible treatments and sane advice, while circumnavigating the forums full of splenetic fury – sufferers of anything resembling fatigue could be an angry bunch, she learned – and leaving lists for me in the morning of Things To Do: new diets to follow, gentle
‘The GP had no idea. Blood tests revealed nothing … I was a medical enigma’
exercise regimes, health clinics to call. She was amazing – doctor, nurse, my entire support system – and she was so incredibly kind. We had by this point been together for almost 18 years, and in a curious way it did wonders for our marriage, though I imagine if she were writing this she might offer quite a different perspective. It was only much later that she confessed her own growing despair: what had happened to the man she had married? Becoming your spouse’s carer in your 70s is one thing; in your early 40s, quite another. To let off steam, she took up salsa classes. I watched her go. She looked pretty.
But while she undoubtedly felt the strain, our new common purpose meant we didn’t just pass every evening in front of the same old boxsets – and wine – towards a 10.30pm bedtime.
Selflessly, with minimum fuss, she helped me get better. I endeavoured to thank her a lot. “In sickness and in health,” she’d say, smiling.
Some time before I did start improving, about two years into my illness, we found ourselves undertaking a necessary road trip across Europe to visit my ailing grandmother in her care home an hour north of Milan. I was still barely leaving the house at that time, but, with the children safely deposited at my mother-in-law’s, I could sit contently in the passenger seat of a car while my robust partner drove us through miles of French autoroute. I was desperate to remind her that I was more than an apathetic sicknote repeating the same lines (“I’m tired, so tired”).
The four very long days we spent getting there and back, stopping off impetuously in tiny Alpine towns for dinner and rest – and fun – was the most reviving thing we could have done. We laughed a lot and, in the car, as I repeatedly urged her to be daring, to change up to fifth gear on this empty stretch of motorway, I was able to remind myself, and be grateful for the fact, that I had married well.