How chronic fatigue syndrome, also called ME/CFS, left Tony Wallace a shell of his former self

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A mysterious illness with few symptoms and no cure is sucking the very life out of Tony Wallace.

The catastrophic collapse of Tony Wallace's life began slowly and silently.

An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right.

Over time, his ambiguous symptoms have morphed into a condition that defies medical diagnosis, resists treatment and relentlessly, ruthlessly drains the life out of his body.

It has sapped his strength, stolen his mobility, ended his career as a police officer and shrunk his world to a tiny space where every move, every word, even every thought, takes everything he has.

In a Facebook post that took two hours to write, Tony laid bare the depth of his suffering.

"I am here, but there is no trace of me," he wrote.

Echoing a line from TS Eliot's famous poem, The Hollow Men, a senior sergeant once told him it was better to go out of life with a bang.

Instead, Tony finds himself living out the poem's final line: "This is how the world ends. Not with a bang but a whimper."

The man who was once sharp, fit and strong knows that fighting his condition only makes things worse.

"I could say I will walk up and down the hill every day, but on the third day I won't be able to get out of bed," he concedes.

"So now my brainpower has to go towards acceptance rather than [saying] I'm going to plough ahead and ignore the pain.

"This disease just doesn't give you that option. You are just down and out."

The disease afflicting him was eventually diagnosed as myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome or ME/CFS.

As he lies in bed, a shell of his former self at the age of just 56, Tony Wallace closes his eyes and reflects on how he went from a cop on the beat to barely being able to get out of bed.

How did it come to this?

Facing the day

As a police officer, Tony Wallace's work criss-crossed the city.

From his days patrolling Perth's CBD on bike, to his role as a qualified pursuit driver, to his time in court as a police prosecutor, the work was as varied as it was demanding.

There is a sameness to every day now.

A long night of sleep that often starts in the day.

A strained awakening through a thick fog of fatigue.

A struggle to rise and begin what has been a daily ritual for more than two years.

He lives a life confined to the four walls of his suburban home, struggling to shuffle a well-worn path from his bed to his bathroom and down the stairs to his armchair, where he will watch TV until the fatigue inevitably slams his eyelids shut.

Tony's wife, Sharon Stitt, believes he is one of the so-called "missing millions" — people with complex illnesses that drive them behind closed doors, away from public view.

Unable to work and cut off from family and friends by their incapacity, they end up isolated and invisible.

A window into a shrinking world

For many people with chronic fatigue, their world becomes shrink-wrapped around them.

Tony's bookshelves are lined with volumes he can no longer read and videos he has to watch again and again because he can't remember the plot.

His wall-mounted TV screen is a portal to YouTube, where he selects simple, short-duration videos that engage him until his focus dissolves into confusion.

"That is my window to the world," he says. "That's about my limit. If Stephen Hawking came up [on the screen] and tried to explain the universe to me, I'd be lost in the first two minutes."

His mobile phone is one of his last links to the outside world, but every thumb stroke to send a text is an effort that strains his concentration and saps his energy.

"Doing a text message is very hard work because that is a fine motor skill and I've lost just about most of my fine motor skills," he says.

"It is a constant mental battle of acceptance and not trying to bully yourself into doing anything."

But being still brings its own health threats, the loss of cardiovascular fitness and weight gain being just two.

"Inactivity brings on so many secondary problems, but I can't force myself to be active," he says.

The suffocating immobility of Tony's life is hard for an able-bodied person to comprehend.

Imagine you spend every day wading through wet cement.

It's always there, impeding your every step, your every move, every minute of every single day.

Only the depth changes.

Sometimes it's waist-deep, sometimes it's chest-deep and sometimes you feel like you are drowning, struggling to keep your head above the surface.

Now imagine what it's like to perform the simplest of your daily tasks, like trying to bring a glass of water to your mouth for a drink.

Or something as simple as patting the dog or putting on your shoes.

This gives you a glimpse of living life from inside Tony's body.

It started with a bout of flu

The effort required for even the simplest action mirrors the efforts Tony and Sharon have exhausted in their desperate search first for a diagnosis, then for treatment and finally, fruitlessly, for a cure.

The condition first emerged following a bout of flu in his 40s from which Tony struggled to recover.

Over the next decade his condition would deteriorate, at first almost imperceptibly, then escalating to the point where his health plunged off a cliff.

Even now, doctors are unclear about what causes ME/CFS and have no definitive test to diagnose it, instead relying on a process of elimination to rule out other conditions.

Controversy has swirled around the condition for decades, with deep divisions in the medical community over what it is, what causes it and whether it even exists.

Those divisions have left sufferers like Tony struggling for answers and support, and left them dealing with a stigma flowing from the scepticism of those who believe their physical ailments are all in their head.

Tony's descent began during a police posting in Carnarvon, on Western Australia's mid-north coast.

When the flu left him with unexplainable fatigue, pain, motor skill impairment and mental confusion, a local doctor eventually settled on a chronic fatigue diagnosis.

Tony was transferred to Perth, where he sought expert medical help.

He underwent a battery of tests, from CT scans to lung function examinations. He was plied with a range of expensive and ineffective treatments, from supplements to ozone therapy.

He was repeatedly treated as though his problem was mental, not physical — put through psychiatric evaluations, asked over and over again if he was depressed.

"That used to make me so cross," Sharon says.

"I could see physically what he was going through and then when he was hospitalised, the doctors would put him through this great big psych evaluation. The police have made him see their psychiatrist.

"You just want to scream and say to them, 'It's not psychiatric, it's not a mental health issue'."

She later found help for her husband in the form of a specialist in Melbourne who focused exclusively on chronic fatigue.

With a change in medication and support, Tony began to regain lost ground, slowly and steadily rebuilding his strength until he could return to full-time work with the WA Police.

By 2016 he was still suffering but would manage by expending his energy at work and using the weekends to rest and recover.

His collapse came in the most unlikely of circumstances — during a break from work.

In early 2017, Tony took long service leave to repair his much-loved small yacht in the hope of one day returning to sailing.

He spent the first few days of his leave scrubbing and working on the boat.

The physical effort broke him, and his life has not been the same since.

What a difference two years makes

There is an insurmountable void in Tony's world between the person he was and the person he is today.

For 18 years he served in the WA Police, where he was a tall, strong, vibrant senior constable.

He rode 30 kilometres a day to and from work and advocated before magistrates as an articulate and persuasive police prosecutor.

That was only two years ago. Now even the simplest household tasks like cleaning his pool can stress his system to its limit.

"My pulse rate will be up around 130 or 140 [beats per minute] and I'm gasping for breath. And quite often I'll have to sit down halfway through that particular task just to let everything slow down," he says.

"My resting heart rate is around 90-100, but to go and do such minor things, and the stresses on my body to go to that level, it's not normal in anyone's book."

Last year the situation got even worse.

Two trips to hospital — once for kidney stones and again for an operation to remove his gangrenous gall bladder — exacerbated his physical deterioration to the point where everything is exhausting.

"He's been in a very poor physical state, slowly declining since then," Sharon says.

"A lot of the time he sits or talks to you with his eyes closed. Speaking is difficult.

"He just can't do anything. He can't even make himself a cup of tea. It's more physical exertion than he can cope with."

The exertion required is evident in his involuntary eye-rolling and muscle twitching, which makes his legs and hands twist and jerk.

"I miss being able to speak with a clear train of thought and conviction," he says.

"I had that and that hurts, losing what you've got. Because this isn't me — it is me, but it's not me. It's not THE me."

An inversion of life

At 83, Len Wallace remains everything his 56-year-old son once was.

A dedicated bike rider on Perth's roads every week, he is vibrantly healthy and sharp as a tack.

Chronic fatigue has inverted their life trajectories, prematurely propelling Tony past his octogenarian father into a physical condition more akin to the ravages of old age.

"My father is 83 years of age and he is in better health and physical condition than I am," Tony says.

"I'm an older man than my old man. People come in here and I'm sitting here with my socks on and my blanket on.

"I'm like an old lady in a retirement home and it's embarrassing."

If the grip of chronic fatigue is bewildering for the sufferer, it can be just as mystifying for their family.

For years, Len and Janet Wallace struggled to understand what was happening to their son, a previously strong and proud man who they had seen graduate from the WA Police Academy.

"At first, he'd have spells of recovery," Janet recalls.

"Towards the end, in the last few years, he would go to work. He maintained a job, but that's about all he did.

"He did work, he would come home and rest and get ready for work the next day."

When his health collapsed, so did what was left of his career.

"When he was first sick his colleagues used to visit him, but gradually that all drops away," Janet says.

"It's a bit like a death. It happens and people are very supportive, but then life takes over."

As those police friends and colleagues drifted back into their own lives, Tony and Sharon realised this was a battle they would fight largely on their own.

Loving the life that is left

In a quiet moment, Sharon speaks through tear-filled eyes of the pain of watching on as the disease threatens to erase the man she loves.

Both have lost much to the illness. Their circle of friends has shrunk, their social life has all but disappeared and both feel as though the future they once imagined for themselves has vanished.

"It's like he's so diminished from what he was, and it's a bit hard when I hear him saying that about himself," Sharon admits.

Sharon occupies a special place in the shrunken world Tony now inhabits, but the reality of the situation is slowly changing her role from companion to carer.

"I think I am slowly losing that role [as his wife] and he knows it — from being his wife to being his nurse," she says, near tears.

"When you get married you say in sickness and in health and that's how it is, but when you're actually faced with that, it's a strange place to be."

As good as it gets

It is the bright smile of a two-year-old child that gives Tony a break from the smothering effects of chronic fatigue.

"Truly at the moment, the one thing that really makes Tony smile happily is Charlotte, our granddaughter," Sharon says. "When she's here he shows more life and happiness than at any other time.

"For her, this is him. She knows him no other way, that's just her grandfather. It's not in her face that he's diminished. This is how he's always been."

The brutal reality of Tony's future is that this may be as good as it gets.

"At the moment, the medication is just keeping me going. You are seeing the best of me," he says.

"A lot of people can't stand any light or any noise, so they are all very real possibilities for my future.

"So it's bleak if you put your mind to it."

He pauses slightly.

"I don't put my mind to it."

Amid the fog of ME/CFS, Tony hangs on, not so much to hope, but to his religious faith and gratitude.

He has faith in God that whatever awaits him beyond his struggle is already in hand. And he is grateful for the life he has lived, knowing some people with ME/CFS are struck down as early as their teens.

"I'm glad I didn't have it then. At least I've had some semblance of a life," he says.

Tony was medically retired from the WA Police Force in November 2018.

It was not the way he wanted to end his career, but he was grateful for a dignified exit.

He was wheeled up to WA Police Commissioner Chris Dawson for a final handshake, ironically from the man who was superintendent of the Police Academy when he graduated in 1990.

He wants to travel to Police HQ to personally thank the Commissioner for that gesture, but he knows he physically can't make the journey.

Instead, he has been writing a letter of thanks to Commissioner Dawson for allowing him to resign with honour.

He started that letter in November 2018. He's been working on it one keystroke at a time.

The letter was one page.

He has just finished it — after 14 months.

Credits

Reporting, photos, video: Andrew O'Connor

Andrew O'Connor Production, editing: Liam Phillips

Topics: chronic-fatigue-syndrome, diseases-and-disorders, police, perth-6000, wa

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