How Dave Clark regained a meaningful life after developing chronic ...

It's New Years Eve and parties are in full flight. Fireworks paint the sky. Happy revellers belt out Auld Lang Syne.

And I miss it all, having already been in bed for hours.

Living with chronic fatigue syndrome (CFS) is like being erased.

It rubs out what my brain and body can do, turning me into a reduced version of myself.

Coping with this illness leaves me clawing back pieces of life in whatever ways I can.

Myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome, affects up to 250,000 Australians.

That's about one in every 100 people.

And for 90 per cent of us, it's a disabling, lifelong condition.

A quarter of people with CFS cannot leave their bed or home due to the severity of their symptoms. And the symptoms are mostly unseen.

You wouldn't know I had CFS just by looking at me.

Dave Clark says he's always exhausted as sleep no longer replenishes his energy levels.(ABC News: Xavier Martin)

What it's like to have chronic fatigue syndrome

I have been living with CFS for 17 years, having developed it after a bout of glandular fever when I was 21.

Chronic fatigue syndrome smashes my body. Sleep no longer replenishes my energy levels, so I'm always exhausted.

I lie down whenever I can because my limbs shake and I get light-headed.

CFS involves inflammation of the body and brain.

My throat is constantly sore, making it painful to talk. My body temperature overheats and bowels are disrupted.

Dave Clark was diagnosed with CFS at 21, a few months after he went skydiving.  (Supplied: Dave Clark)

I am hypersensitive to noise and light. I have brain fog that feels like permanent jetlag, making it difficult to speak clearly and remember details.

On top of that is the post-exertion malaise.

Even after a 20-minute walk or a long chat with someone, I can experience a debilitating increase in my symptoms for up to the next month.

Sometimes I experience malaise, sometimes I don't, meaning I cannot predict the future toll of what I'm doing today.

This irregular rhythm of illness erases confidence in my body.

The costs of living with chronic fatigue syndrome

Having CFS is like being a dormant seed, waiting for just enough energy to come alive.

To get energy to function, each day I take 15 tablets and five powders — together costing a fifth of my income.

Without medication, I struggle to participate in daily life.

There are then the hits to my sense of worth.

Often, when my body produces less, I'm seen as worth less.

Dave Clark had a bout of glandular fever at age 21, and developed CFS after.(Supplied: Dave Clark)

This message is reinforced by the meagre amounts of finance and research put towards CFS in Australia.

It is disheartening when something like the burrowing habits of an animal receives more funding than humans trapped inside their homes by CFS.

Another regular, yet subtle, hit to self-worth is being on the receiving end of microaggressions.

'Just push through it.'

'You're not the only one who feels tired.'

'It's not even a real illness.'

Microaggressions imply that CFS is all in my head, that it's not a big deal.

Over the years, eight doctors have mocked and dismissed my condition.

Each microaggression cancels my call for help, silencing stories of resilience. They spread shame through my body like wildfire.

Dave says living with CFS is like being erased as it rubs out what his brain and body can do.(ABC News: Xavier Martin)

Clawing my life back

Each aspect of CFS feeds the feeling of being snuffed out. Amid all of this, how does someone claw back a meaningful existence?

I start by no longer despising my body. It is doing its best with what it has, working overtime to help me live part-time.

I give myself the rest I need and accept a tempo of slower, gentler living.

My body carries grief and frustration, because CFS steals daily pleasures and future dreams.

Every few weeks then, I crank music in our lounge room and let my tears flow. This helps the body to release some of its pain.

It's then about finding life in different ways. Small things have become important things.

Watering the garden, chai tea, a good book, losing at cards to my nieces – there is beauty and joy in these things.

Dave Clark says small things, such as gardening, have beome important things.(ABC News: Xavier Martin)

Pursuing what makes my life meaningful

When I can, I do something meaningful.

I value depth in relationships, delighting in the outdoors, nurturing my faith, pursuing the arts and encouraging people during times of difficulty.

This includes working as a counsellor.

If I can do something that lives out my values, life regains purpose.

To do this consistently, I've become a fierce conservationist of energy.

I plan my week before it begins and aim to only use 90 per cent of the energy I have.

I say no to most things so that I have energy left to connect with good people.

They're the ones who laugh with me, listen well and work hard to accommodate my CFS. Their empathy is its own remedy.

My worth as a person

I crash on the couch with Bek, my wife and best friend. We put on a TV show and wind down together.

Each day, Bek makes space for what my health needs. She has the deepest wells of compassion.

And it's love and support from good people that remind me of my inherent value as a human. It's about who I am, not what my body cannot do.

So while my health is rarely reliable, my sense of worth now is.

Dave Clark says he has regained a meaningful life with chronic fatigue syndrome, but it has been an adjustment.(ABC News: Xavier Martin)