Living with the world’s most painful disease Toni did everything to become a Mum.

She is so strong

Here Toni Lea, 33, Gold Coast, Qld tells the story in her own words.

! was sitting at my desk reading emails, when my colleague came up to me.

‘Toni, half your face looks a little strange,’ she said.

I tried to reply but couldn’t move my mouth to speak.

Suddenly, I was in agony, like an electric shock was vibrating across my face.

Am I having a stroke? I panicked.

As the pain intensified, I went to my doctor just across the road, who sent me for an emergency MRI, then I was rushed to hospital.

By now, it felt like someone was slowly peeling off my skin.

Nurses gave me pain relief and I was able to talk again.

‘What’s wrong with me?’ I cried, as doctors ran more tests.

‘You have trigeminal neuralgia,’ a doc said.

TN is a form of neurological pain which causes excruciating, sporadic facial agony. It’s incurable, but the disease could be managed through daily doses of strong pain medication.

Doctors had no idea what had caused my TN.

‘If anyone can get through this, you can,’ my mum Linda said.

But alone at night, I looked up what TN truly meant for my future.

Nicknamed ‘the suicide disease’, the intensity of TN is so physically and mentally incapacitating that many end their own lives, one article read.

I found out the prolonged use of pain medication is linked to infertility in women and the unbearable pain meant that most women with TN can’t carry a child at all.  

To top things off, I wouldn’t even be able to fall pregnant while on these types of meds.

I was single and 24, but I knew I wanted to have a family someday.

Every day for the rest of my life I’ll be in constant agony, I thought devastated.

Mum’s words rang through my ears though.

I am strong enough to fight this, I thought.

Even after my brain surgery was unsuccessful in numbing the pain, I remained positive.

Every day, I would medicate with three Fentanyl patches, plus multiple prescribed pain medication tablets.

Still, the agony was mind numbing and even brushing my teeth was  complete torture.

Then I met a tall blond man named Kieran one night at a club, and he instantly took my breath away.

He supported me after  another unsuccessful surgery in 2012. So I began searching for other ways to deal with chronic pain.

Kieran knew the chance of us having a family was next to none, but accepting me for me, we married in 2015.

‘I want to be a mum,’ I  whispered to Kieran one  night.

So, visiting a chronic pain clinic, I learnt how to wean myself off my meds so I could fall pregnant.

Dealing with the pain with  no medication was the hardest thing I have ever done. It felt like my head was going to explode.

For the baby, I would tell myself, as electric shocks coursed through my head.

Taking long walks, meditating and warm baths, I did whatever I could to distract myself from the constant agony.

Miraculously, it wasn’t long before I saw two beautiful pink lines on a pregnancy test, and I burst into tears.

 ‘Kieran, I’m pregnant!’ I screamed.

The fight wasn’t over and the pain was indescribable.

During my first trimester, I took as many walks as I could, to distract myself, and used heat packs.

‘I feel like I’ve been pregnant for 10 years!’ I cried to Kieran.

‘You’re the strongest person I know,’ he comforted me. ‘You can do this.’

One day, folding clothes in the nursery, pain quickly took hold of my face.

Making my way downstairs to get my heat pack, I couldn’t think clearly.

It was like being in slow motion, as I started to fall down the full flight of stairs.

At the bottom, I instantly started to cramp.

Doctors managed to hold off labour for a week, but at 36 weeks, our little man was distressed so I was taken in for a C-section.

As a healthy wail echoed around the room, Kieran and I couldn’t stop smiling.

Then, while our tiny bub was whisked off into special care, I was wheeled into recovery.

There, I was passed a cup of pain meds.

Finally! I thought, quickly swallowing them.

Five days later my precious baby Theodore was placed in my arms.

‘You were worth it,’ I smiled to my tiny bundle.

‘You’re amazing,’ Kieran said, kissing my forehead.

Now, Theo has just turned two, and even though our little terror runs the house, Kieran and I wouldn’t have it any other way.

There isn’t one second where I am not in pain.

For me, I have learnt to deal with the torture that TN puts me through every day.

It certainly won’t stop me hugging my boys.

I want to raise awareness about chronic pain because I might be smiling on the outside but inside, I am battling an invisible demon.

But my beautiful family make this agony worth it.

Follow Toni on Instagram @motherhood_by_tonilea

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