|
|
|
My Story
Hi there,
I’m Vicki, Chronic Health Doula at LaurenKate, and this is my story.
My whole life I’ve been surrounded by people needing care: family, friends, as a nurse or working with special needs children. I’ve been active, hands-on and never shied away from getting my hands dirty.
All that changed as disease ravaged my body. Fighting for my life, I was 100% reliant on others. Too sick to care for myself, let alone my chronically ill son, another unknown life-changing world opened up.
I’m Vicki, Chronic Health Doula at LaurenKate, and this is my story.
My whole life I’ve been surrounded by people needing care: family, friends, as a nurse or working with special needs children. I’ve been active, hands-on and never shied away from getting my hands dirty.
All that changed as disease ravaged my body. Fighting for my life, I was 100% reliant on others. Too sick to care for myself, let alone my chronically ill son, another unknown life-changing world opened up.
But let’s rewind.
Before
Whether out contracting, nursing, working at schools or volunteering in the community, I’ve always mucked in. Building, lamb marking or sheep showering on the farm, the dust and grit flew and I loved it.
But in 2011, a series of 1 in a million events over 24-hours changed everything.
A regular blood donor, one day the procedure sent my heart into Cardiac Artery Spasm and I was flown to Perth for an angiogram.
Only when they rolled me over to take me back to my room did the doctors realise they had ruptured an artery. My gut was so full of blood I looked pregnant.
To save my life I was given blood transfusions, triggering a whole range of symptoms no doctor could explain for another three years.
Chronically ill since receiving a tick bite with a ‘bullseye’ rash when he was 8, by 2014, my eldest needed round the clock care. By accident, we finally discovered it was the tick bite that had infected him with Lyme.
Matching many of my symptoms to his, we concluded I was likely given infected blood. You see in Australia blood isn’t screened for Lyme Disease as the authorities don't believe it exists here.
My life saver turned out to be a devil in disguise.
I lost 20kg and use of my left side, suffered severe nerve pain, became deaf in my right ear, constant tinnitus, muscle wasting, joint pain, severe gastric disturbances, to name a few.
I lost cognitive function to the point where I couldn’t remember names and faces of loved ones, rattling from the 80+ pills a day I had to take.
Some days I felt there wasn't room for food, and I didn't know which was worse the disease or the treatment.
Options in Australia were limited and problematic, forcing us to fly to the other side of the world for invasive, revolutionary treatment that might just work.
With no one to guide and support me, I was in a place of helplessness, isolation, frustration, fear, grief and despair. Ultimately, this led me to set up LaurenKate, so no one would feel as alone as I did.
To then have the treatment work for me but not my son is the most devastating experience I’ve ever had. No parent or child should go through that, nor talking to your child about dying and his funeral arrangements.
I am heartbroken the treatment didn't work for my son, but I don't regret my decision. I had to do it, I had to try.
As a finale to all this, when we were abroad, my other son was also bitten by a tick - Lyme struck again.
If it hadn’t happened to us, I wouldn’t have believed it.
But in 2011, a series of 1 in a million events over 24-hours changed everything.
A regular blood donor, one day the procedure sent my heart into Cardiac Artery Spasm and I was flown to Perth for an angiogram.
Only when they rolled me over to take me back to my room did the doctors realise they had ruptured an artery. My gut was so full of blood I looked pregnant.
To save my life I was given blood transfusions, triggering a whole range of symptoms no doctor could explain for another three years.
Chronically ill since receiving a tick bite with a ‘bullseye’ rash when he was 8, by 2014, my eldest needed round the clock care. By accident, we finally discovered it was the tick bite that had infected him with Lyme.
Matching many of my symptoms to his, we concluded I was likely given infected blood. You see in Australia blood isn’t screened for Lyme Disease as the authorities don't believe it exists here.
My life saver turned out to be a devil in disguise.
I lost 20kg and use of my left side, suffered severe nerve pain, became deaf in my right ear, constant tinnitus, muscle wasting, joint pain, severe gastric disturbances, to name a few.
I lost cognitive function to the point where I couldn’t remember names and faces of loved ones, rattling from the 80+ pills a day I had to take.
Some days I felt there wasn't room for food, and I didn't know which was worse the disease or the treatment.
Options in Australia were limited and problematic, forcing us to fly to the other side of the world for invasive, revolutionary treatment that might just work.
With no one to guide and support me, I was in a place of helplessness, isolation, frustration, fear, grief and despair. Ultimately, this led me to set up LaurenKate, so no one would feel as alone as I did.
To then have the treatment work for me but not my son is the most devastating experience I’ve ever had. No parent or child should go through that, nor talking to your child about dying and his funeral arrangements.
I am heartbroken the treatment didn't work for my son, but I don't regret my decision. I had to do it, I had to try.
As a finale to all this, when we were abroad, my other son was also bitten by a tick - Lyme struck again.
If it hadn’t happened to us, I wouldn’t have believed it.
Now
I admit to falling into the mindset of saying I'm a chronic Illness sufferer and letting my illness define me. At times I couldn’t see the light at the end of the tunnel especially when trying to find anyone to help us medically, emotionally, financially or even just with practicalities.
Together we’ve learnt that our disease doesn’t define us. My eldest can’t change that he's terminally ill, and my youngest can’t change that his life is dictated by chronic fatigue, cognitive function issues, impaired hearing and severe headaches.
But they don’t let those things define them and work within their limitations to get the most out of life. And I could not be prouder.
Some of my own symptoms have improved, but I have to block my calendar out each month when I get a migraine, can’t walk at times due to excruciating pain and don't get me started on the brain farts…!
At my worst I had to give up work, and while my restrictions don’t qualify me as a ‘reliable employee’, I’ve found a way to structure work around life instead of the other way around.
I now know that I am more than just my diagnosis.
I love to laugh, dance, take photos, eat what I shouldn't, help others, volunteer and do a mean impression of Darth Vader in my sleep apnoea mask.
Bad days, pain, flair ups etc are all par for the course, they’ll come and there’s nothing you can do about it. But that doesn’t stop you living.
My sons and I now live ‘in spite’ of these challenges, appreciate the good days because we know not every day is like that. And we’re ok with that.
Together we’ve learnt that our disease doesn’t define us. My eldest can’t change that he's terminally ill, and my youngest can’t change that his life is dictated by chronic fatigue, cognitive function issues, impaired hearing and severe headaches.
But they don’t let those things define them and work within their limitations to get the most out of life. And I could not be prouder.
Some of my own symptoms have improved, but I have to block my calendar out each month when I get a migraine, can’t walk at times due to excruciating pain and don't get me started on the brain farts…!
At my worst I had to give up work, and while my restrictions don’t qualify me as a ‘reliable employee’, I’ve found a way to structure work around life instead of the other way around.
I now know that I am more than just my diagnosis.
I love to laugh, dance, take photos, eat what I shouldn't, help others, volunteer and do a mean impression of Darth Vader in my sleep apnoea mask.
Bad days, pain, flair ups etc are all par for the course, they’ll come and there’s nothing you can do about it. But that doesn’t stop you living.
My sons and I now live ‘in spite’ of these challenges, appreciate the good days because we know not every day is like that. And we’re ok with that.
If this has touched you or anyone you know, please contact me for advice, guidance or just someone you can turn to who really, truly gets it.
|
|
|
