A journey that was and is never ending

* She awakes not knowing how the world will look to her today, she has learnt to block out all distractions and continue walking that path forward as life is a gift and one that she unwraps daily as she makes the most of her gift.

Age: 57

Diagnosis: Vestibular Neuritis

This is a long story of a journey into a world of the unknown, which I am still very much on, and one that nobody ever expects to experience. It’s Jan 22, 2023, and we are about to land in Denpasar for my very first time in Bali.

I’m looking forward to making many memories and taking photos of the beautiful sunsets and sunrises, and relaxing on a very long overdue holiday!

As we were making our way through Customs I began to get a headache, one which I’d never had before. It seemed to come with pressure that was located in the back of my head.

Thinking it could be from tension, I took paracetamol and we made our way to our guide, who was taking us to our accommodation. We were staying in Nusa Dua.

Twenty four hours after arriving I was still experiencing a headache and it wasn’t going away!

Despite the headache, I still managed to do a little sightseeing. A few days later I visited a day spa in the hopes it may relieve what I was thinking was just tension.

On Tuesday we had plans to visit Jimbaran Bay to catch a beautiful sunset and enjoy a feast of seafood. At this stage my headache had started to ease slightly and we were getting ready to get picked up by our driver.

We arrived at Jimbaran Bay. It was amazing! We got our seats and I made my way down to the shoreline and began taking photos of the most stunning sunset I had ever seen.

Twenty minutes had passed so I made my way back to the boys. I was feeling great. The massage had relieved my headache, or so I thought.

My recollection of what happened next is a little foggy. As I sat down I felt a little weird.  A nauseous feeling began, and as I looked up the beach it did not look like it did when I was standing on the shoreline taking photos. It seemed to have flipped upside down, and then began to spin uncontrollably. I grabbed my partner’s arm and said that I needed to get to a bathroom. I don’t feel so great, and as I tried to stand it felt like an out of body experience. My body had become weak, my sight and senses all became muffled, and I certainly wasn’t in control of my body. From then on my memory of the car ride is very limited as all I remember is scattered sounds and feeling very sick.

Thank goodness our new Balinese friend, Wayan, made the decision to take me to BIMC hospital in Nusa Dua. I had now lost the ability to walk, my vision had changed, and words just wouldn’t come out the way they were supposed to!

I was so scared. We were in a foreign country and I had never experienced anything like this in my life before.

We arrived at the hospital and the timing couldn’t had been any better as I started throwing up and the spinning had got worse.

I was given medication. Whatever it was I was extremely grateful because it allowed me to  sleep for hours!

I vaguely remember waking up and seeing the boys standing at the end of the bed with a doctor and hearing that I could go in a few hours. From then on it’s all a nightmare and a scary one.

When it was time to go and I went to get up, there was ringing in my ears, my vision was so weird, and my legs would not move.

Over the next few days I was laying in a Bali hospital being looked after amazingly and treated by neurologist, Dr. Garcia. Thank goodness the cocktail of medications I was on were helping I was no longer feeling sick, but I did notice my vision was weird and I had what seemed to be a tremor. l had lost the ability to walk and felt like everyone and everything was constantly moving. It was so terrifying, I just wanted to go home.

On day 3 in hospital I was transferred to Denpasar by ambulance for an MRI. Dr. Garcia was waiting for me. She touched my hand and told me I would be well looked after and to relax. By now I was truly scared. Everything I knew as my normal life didn’t seem to be so normal anymore. It was weird, dark, and very scary.

Results of the MRI showed a possible brain bleed from a lesion known as a cavernoma. Its location was tricky. It was situated close to the brain stem. I was totally numb I wanted to go home to my children, my parents, my friends, and my pets.

Two weeks passed laying in the hospital as arrangements were being made for me to be medically evacuated out of Bali and into a Sydney hospital for what we were believing was possible surgery.

During the 2 weeks in a Bali hospital my brother and sister-in-law flew over to support us. During this time I was being looked after by our new Balinese friends, who were sending flowers, slippers, and Wayan, our driver, visited me. I will always hold a very special place in my heart for these people.

Everything went smoothly for my evacuation and the day arrived to finally get back home to Sydney, even though I did not know what was ahead.

They decided against surgery. It was deemed too dangerous to operate as I could end up worse off. So the testing began. My symptoms seemed to worsen.

It has been a long, hard road but I am very blessed to tell my story.

I had a lot going on and many months spent in a rehabilitation unit. It’s now 7 months later and I am still attending rehabilitation as I retrain my brain and body to enable me to walk again. It’s not easy, and I continue pushing through. Here is my diagnosis and some of my symptoms:

• Vestibular neuritis

• Central Vertigo

• Nystagmus

• Double vision blurred vision

• Ringing in the ears

• Anxiety’s due to fear it will happen again

• Nausea

My world is different now. It’s challenging, but I truly appreciate being given a second chance to live and bring awareness to this debilitating condition. I am forever grateful for my Balinese medical team and friends who took such great care of not just me during that dreadful time but also my family, and of course, my multi-disciplinary team here in Australia.