My Australian GBS Story

My Guillain-Barré Syndrome Journey

If someone had told me in December that within a few days I would lose the ability to walk, feed myself, and eventually spend ten weeks in hospital, I would have laughed.

I was healthy, busy, helping my husband run a successful air conditioning business, raising two young children, and planning for the future.

Then Guillain-Barré Syndrome (GBS) changed everything.

It started with pain

On 11 December, I developed severe pain in my thigh, glutes and left shoulder. It wasn’t normal muscle soreness. It was intense and relentless.

By 11pm that night, I was in hospital looking for answers.

The following day the pain spread into my right shoulder. Pain relief wasn’t touching it. After a CT scan, I was discharged with a diagnosis of an unknown virus.

Something didn’t feel right.

On 13 December, tingling started in my hands and feet. Back pain followed. Less than 24 hours later I was back in hospital.

Doctors suspected Guillain-Barré Syndrome.

A lumbar puncture was performed, and I immediately started Intravenous immunoglobulin treatment or better known as IVIG.

At the time, I had never heard of GBS.

I was about to learn far more about it than I ever wanted to know.

Watching my body shut down

Despite treatment, things continued getting worse.

On 15 December I started losing function in my legs.

Every day seemed to bring a new loss.

Walking became difficult.

Then impossible.

Feeding myself became difficult.

Then impossible.

Simple tasks that I’d done thousands of times without thinking suddenly required help from someone else.

The hardest part wasn’t the physical symptoms. It was the speed.

I could literally feel my body shutting down. Paralysis had set in and I could not move anything below my neck.

I was transferred to Princess Alexandra Hospital as my condition rapidly deteriorated.

Doctors were becoming increasingly concerned. Discussions around respiratory function became more serious. I was frighteningly close to requiring intubation.

At that point, nobody knew where the disease would stop.

The Man Who Refused To Give Up

During the darkest period of my illness, my husband became my voice when I couldn’t advocate for myself.

He watched me deteriorate despite treatment and pushed doctors to consider Plasma Exchange Therapy (PLEX).

He wasn’t prepared to sit back and watch me continue declining.

Looking back, I genuinely believe his persistence helped change the course of my recovery.

What makes his efforts even more incredible is everything else he was carrying at the time.

While I lay in hospital unable to care for myself, he visited me almost every day.

At the same time, he was running our air conditioning business through what is traditionally the busiest time of year.

He was caring for our two young children.

He was navigating school holidays.

He was managing a household.

And somehow he still found the energy to sit beside my hospital bed and fight for me.

We were incredibly fortunate to have family and close friends who stepped in whenever they could. Their support helped keep our family afloat during a period that could have easily overwhelmed us.

GBS may have happened to me, but our entire family lived through it.

Rock Bottom

By the time PLEX treatment commenced on 29 December, I had reached my lowest point.

I couldn’t walk.

I couldn’t feed myself.

I couldn’t shower myself.

I couldn’t use the bathroom independently.

I had lost almost all control over my own life.

For someone who had always been fiercely independent, it was devastating.

There were moments where the future felt terrifyingly uncertain.

Would I walk again?

Would I work again?

Would I be able to be the mother my children deserved?

Nobody could answer those questions.

Learning To Celebrate The Small Stuff

Recovery didn’t arrive in dramatic movie-style moments.

It arrived in tiny victories.

On New Year’s Day, I could feed myself again.

Nine days later I could lift my legs.

On 12 January, I stood with assistance during physiotherapy.

A few days later I graduated to a Sara Steady. (This may require a quick Google search)

Every small achievement felt like winning a marathon.

People who haven’t experienced serious illness often underestimate how exciting these moments can be.

Standing.

Moving a leg.

Holding a fork.

Using the bathroom independently.

These became milestones worth celebrating.

And trust me, we celebrated every single one.

The Long Road Through Rehab

On 20 January I transferred to Logan Rehabilitation Hospital.

The focus shifted from survival to rebuilding.

I took my first assisted walk.

Fifteen metres.

Then twenty-five.

Then a little more.

And a little more.

My muscles had wasted dramatically during my hospital stay. My weight dropped alarmingly low.

Everything was hard.

But every day I was moving forward.

I remember the excitement of being allowed to transfer from a wheelchair to a chair.

The first overnight visit home.

The first time I climbed stairs.

The first time I walked outdoors.

The first time I realised I might actually recover.

By mid-February I had progressed to a wheelie walker.

Soon after that I was walking independently.

After ten weeks in hospital, I was finally discharged on 23 February.

Walking out those doors remains one of the greatest feelings of my life.

My Slightly Controversial Recovery Plan

Once I reached rehabilitation, I became obsessed with recovery.

I wanted every possible advantage.

Alongside physiotherapy, occupational therapy and medical treatment, I adopted what some people might consider a controversial or holistic approach.

I started taking creatine.

I started taking Lion’s Mane mushroom capsules.

I started supplementing vitamin B12.

Now before the medical community comes after me, let me be clear:

I am not claiming these supplements cured GBS.

I am not claiming they are a miracle treatment.

What I am saying is that after losing the ability to walk, I was willing to investigate every safe option that might potentially support muscle rebuilding, nerve health and recovery.

Did they help?

I honestly don’t know.

Maybe they contributed.

Maybe they didn’t.

But they became part of a bigger strategy that included physiotherapy, exercise, nutrition, determination and refusing to accept that this illness would define the rest of my life.

At the very least, they gave me confidence that I was doing everything possible to help my body heal.

Life After Hospital

Recovery didn’t stop when I left hospital.

In March I was walking independently on hard surfaces and only needed a walking stick on uneven ground.

I attempted my first run.

It wasn’t pretty.

But it happened.

My weight started increasing.

My strength started returning.

I drove a car again.

I returned to work.

I started exercising regularly.

In early April I managed a 500-metre run.

By June, I was jogging 1.5 kilometres.

Six months earlier I couldn’t lift my own legs into bed.

Now I was running.

Not quickly.

Not gracefully.

But running.

And that felt incredible.

What GBS Taught Me

GBS stripped away everything I took for granted.

Walking.

Eating.

Working.

Parenting.

Independence.

It forced me to rely on others in ways I never imagined.

But it also taught me things I may never have learned otherwise.

It taught me patience.

It taught me resilience.

It taught me gratitude.

It taught me that progress isn’t always measured in kilometres or kilograms.

Sometimes progress is measured by standing up.

By holding a spoon.

By taking one more step than you took yesterday.

Most importantly, it reminded me how extraordinary people can be.

The doctors who treated me.

The nurses who cared for me.

The physiotherapists who pushed me.

The friends who supported us.

The family who stepped in when we needed them.

And my husband, who somehow managed to hold our entire world together while refusing to stop fighting for me.

Today

I still have work to do.

Recovery from GBS is measured in months and years, not days and weeks.

There are still challenges.

There are still reminders.

There are still days where I get frustrated.

But when I compare where I am today to where I was six months ago, it’s hard not to feel grateful.

Six months ago I couldn’t walk.

Today I can jog.

Six months ago I couldn’t feed myself.

Today I can work, drive, exercise and enjoy life with my family.

GBS took a lot from me.

But it didn’t take everything.

And it certainly didn’t take my determination.

One step at a time, I got my life back.

And that’s a journey I’ll never forget. ❤️