My Story so far...
Achievements I am most proud of
Completing Certificate IV Community Services in 2018, and having my final exam just weeks after near death in ICU.
Building a Website, twice.
Learning how to create and publish a small magazine for the Australian Pulmonary Hypertension community.
Forming lasting relationships and friendships with our amazing sponsors from my former organisation PHNA.
Spending quality time with very special individuals all living with, or caring for someone with pulmonary hypertension, and being able to help in some small way.
Winning Awards for
"Support Group and Self Help Champion"
For founding, running and growing our
pulmonary hypertension support group.
From ConnectGroups Association 2015.
"The Tom Lantos Community Services Award"
From the Pulmonary Hypertension Association USA.
PHNA were one of 12 International Winners in 2016.
We created the first patient pack & resources for people living with pulmonary hypertension in Australia.
For creating the first educational patient pack for the pulmonary hypertension community in Australia.
From ConnectGroups Association 2018.
"Community Services Health Consumer Award"
For my work in the field of pulmonary hypertension,
From the Health Consumer Council 2019.
Growing and Learning
Working with, and learning from some amazing people who I will love and cherish always.
Learning to forgive myself and make my
well-being a priority.
Forgiving others, even when they weren't sorry
Starting over, again..to find my Y!
Being Brave & Never Giving Up!
The Journey to Me - 2020
I'm all for reinventing yourself. I love the idea of starting something new and challenging yourself in ways that excite and help you to grow. However, I didn't think I would be reinventing myself at this stage in my journey.
I was diagnosed eleven years ago with a progressively terminal rare chronic illness called pulmonary arterial hypertension. It had a survival rate of about 3 years if treatment is effective, and at that time there were only a few medications to treat this disease. I was nearly dead when I was finally diagnosed, which only complicated the whole process. In my long journey I have already survived being terminal three times.
I have faced and overcome many challenges, and changes, jumped through countless hurdles, and been forced to grow in ways that were often incredibly painful, especially in the last two years.
In late 2019 my future changed unexpectedly, and it was with enormous sadness that I decided to alter the trajectory of my life. Having spent ten years working hard to create, grow, establish and network within the pulmonary hypertension area in Australia and internationally, I found myself desperately unhappy and frustrated with the politics and amazing power imbalance. I had spent years studying and gaining qualifications and new skills in the field of community services, web design, social media and publishing. I had created an amazing small team of people all with a lived experience to work alongside me. After 8 years of being a support group we became an incorporated association and national charity for Australia. Ten years of hard work had finally reached its crescendo and we had made it, or so I thought...
I had suffered a great trauma in the time leading up to our incorporation and I seriously should have stopped the process and reassessed back in 2018. Being a fighter and not used to giving up, I convinced myself that it would all turn out ok. I was wrong. After months of incredible stress and a diagnosis of PTSD from the emotional turmoil and two nervous breakdowns, I realised I could not go on like this anymore. I became so depressed I realised I could no longer work for our organisation in good faith, as it was the people who were supposed to be my medical caretakers who had caused my trauma. I could no longer cope and I began to withdraw myself back into my protective shell. I needed time to heal, time to forgive the people who had caused my pain and suffering.
You've heard that old saying "do as I say, not as I do"? Well eventually that can bite you in the ass! Preaching self care to others and not practising it yourself leaves you exhausted and empty. I realised this was what my life had become. The cup was empty where it was once overflowing with joy and happiness, now there was only darkness and despair. Depression set in and fear ruled my every decision. I had worked so hard for so long and now I was literally broken, both physically and emotionally. I had to make peace with those now broken pieces that made up my life.
Despite the many challenges throughout my life I have always been a happy person. A cup half full, joyful with a zest for living. I love people and helping out where I can be useful in my community. I no longer felt these things about myself, and that had to change. I very tentatively and bravely decided to change pretty much everything in my life. I realised I needed a mentor, and I needed to go back to the basics of why I started my journey into the self help and support group sector to start with. I needed to start thinking about what I needed too. I needed to start living again, not just existing.
I read an amazing quote that said "Don't do great things - do every little thing in a great way" Mother Teresa. After practically killing myself, and everyone on our team I finally started to listen to some of these amazing life altering quotes. I spent time talking with the people who had been so supportive of me and my vision for our organisation, and really listening to why they had been attracted to helping. I had somehow lost my way, my uniqueness in a quest to be included and accepted. It was time to return to the basics. Time to discover who the new me could be. Take my own advice about self-care, and start enjoying life again.
So this is the beginning of the journey to me under the new banner of "Chronically Inspired" Life.Beyond.Disability. 2020, a new year and a new decade.
Wish me luck, you are all invited along for the ride!