Chronic fatigue after surgery: ‘I went under 100%, and woke up 1%’
A cave diver, a skier, an 80-hour week workaholic: John Atkinson lived life at full throttle.
Overseeing equipment design for outdoor companies like Macpac and Kathmandu, work and leisure took Atkinson to some of the world’s most remote and remarkable places.
‘‘I used to disappear into the Indonesian jungle for weeks at a time,’’ Atkinson said. ‘‘Once, I did a first descent into a 300-metre cave shaft, abseiling down past an enormous waterfall with native bats flying past me.’’
The Nelson man was fit, active and at the top of his professional game. But after a simple elective surgery last January, everything changed. ‘‘I went under 100%, and woke up 1%,’’ Atkinson said.
He had developed chronic fatigue syndrome (CFS), a complex illness affecting the body’s systems, particularly the nervous and immune systems.
The cause is not fully understood, but it’s usually sparked by a viral infection. Atkinson believes anaesthesia was his trigger.
Emeritus professor Warren Tate, of the University of Otago’s department of biochemistry, said until recently the trigger for CFS was solely thought to be a postviral infection. However, research now tells us that for about 20% of sufferers, this isn’t the case. As well as surgery, triggers Tate has seen include exposure to toxic agricultural chemicals, and childhood trauma.
Tate, whose research began three decades ago when his then 14-year-old daughter was diagnosed with CFS, said his studies had been reinvigorated by the emergence of long Covid. Now, he is working on a study comparing the two conditions.
‘‘The diseases are very similar. Long Covid could be included under the CFS umbrella, but it has its own characteristics.’’
The perception of CFS is of extreme tiredness. ‘‘That’s not quite accurate,’’ Atkinson says. ‘‘It’s not just physical.’’
Unable to process visual cues, Atkinson can’t walk on surfaces that look irregular, even if they’re perfectly flat and riding a bike is also off the cards. ‘‘It’s not the physical exertion. Focusing on balance, with the ground moving to the left and right of me sends me off. I can’t ride more than 100 metres.’’
Sounds drive him crazy. For a year, he struggled to read a book or watch anything thoughtprovoking. ‘‘Watching something like Captain America, you can take it in, it’s entertainment. But for something interesting, like a documentary, with information to take in and process, I’d get distressed.
‘‘[Talking] face-to-face is OK, because there’s body language and eye contact. But a phone call, my mind can’t seem to take enough information.’’
Inevitably, Atkinson’s relationships have changed. Friendships built on mountain biking and tramping have faded away, and he’s taken a discreet step back from the loud, extroverted friends whose company he finds too much.
‘‘If you were more social and gregarious it would be isolating, but I have always been reasonably comfortable in my own company.’’
His wife, by Atkinson’s side on many of his adventures, had been ‘‘amazing’’, but also struggled to adapt, he said.
‘‘I’m lucky, she’s my best friend. [But] people don’t think of her; it’s affected her easily as much as it has me.’’
With no cure for CFS, traditional medicine can only offer ways to relieve symptoms, Atkinson said.
However, with long Covid sharing many symptoms, there’s a renewed emphasis on exploring CFS that could open doors to new treatment.
Atkinson has tried a range of alternative treatments: herbal regimes, acupuncture, holistic pulsing and meditation. Some have made a difference, he said. ‘‘If I was talking to someone with CFS, I would say, reach out to all different options and try them gently.’’
Atkinson is healing, albeit slowly, he said.
‘‘There’s a plateau, then I’ll get a slight improvement. Often it’s so slight, I have to ask other people, am I any better?’’
Atkinson’s home has a panoramic view of the Waimea Inlet, backed by the Arthur Range. It’s a spectacular vista, but Atkinson sees the snowcapped mountains with mixed feelings. ‘‘I used to be a very good skier. Looking out at the snow on Mt Arthur breaks my heart, because I can’t go there.’’
Coming to terms with his limitations is a work in progress. ‘‘A lot of people love their job; or their passion, their sport. When you’re unable to do any of those things, what do you do next? You have this existential crisis when you say, what gives my life meaning? It’s been a real soul search.’’
Atkinson concentrates on what he can do: , learning to bake and paint, and nurturing meaningful friendships. Making small changes to his house and garden, instead of the full renovation he’d planned. ‘‘It would be all too easy to become very depressed .... I’ve always thrown myself into everything, I can’t afford to do that any more.’’
Zest for Life, run through the Top of the South Community Foundation, aims to provide small grants to make life easier for people living with CFS. For more information see topsouthfoundation.org.nz