About me

Finally after a few long years of deliberation I have taken the plunge and started my very own blog. I've been on the roller-coaster that is chronic illness for about 4years now and it feels like a lifetime. I am a 26 yr old girl from Australia with very severe Dysautonomia in the form of POTS (Postural a Orthostatic Tachycardia Syndrome) and AAG (Autoimmune Autonomic Ganglionopathy) that has affected almost every system of my body negatively. Both conditions can be extremely debilitating and in my case they have been quite significant. Almost every autonomic functions of my body have been impaired and I rely on a huge array of medications and intervention therapies to get by day by day.
It's become a life that I would never have dreamt existed.

I have spent a grand total of 6 months at home since 2010 whilst the rest of the time I've essentially been 'living' in the hospital as an inpatient. It's sad to say that it feels like my second home, but it's true.
I was admitted in early 2010 when my body decided to demonstrate the beginning of many performances and first discharge was not until August 2013. I spent about 6months at home & returned to hospital in February with another nasty infection yet again and here I remain now...
Dysautonomia has affected every single aspect of my life including having multiple autonomic nervous system dysfunctions, it has taught me so many things about; myself, my amazing family, who my true friends are and some unexpected saddening realities.
I've decided to write this blog as I want to share my journey, my trials and tribulations and my Story. I have made a conscious effort to not let me become my illness, rather it be only a part of me. I don't often go into any detail of my life and thought that this might be an avenue to vent, chat, express & be inspired by others in similar positions.

As of right now, I cannot sit up unsupported, stand, walk & raise my arms without passing out & losing consciousness every time. Everyday life brings unthinkable challenges for me and so many others living with chronic illness. Having an invisible illness like Dysautonomia can be very challenging as people cannot always see the health problems and so find it hard to understand, empathise and relate to the new 'me'.
My dream in life is to complete my university medical studies & live an independent life doing basic things like walking, standing for periods, doing my hair & other basic bodily functions that I will not go into.
I just want my life back.

Before Dysautonomia I was so....Normal. I was your typical girl with everyday problems who loved to socialise and soak up life's best offerings (including cocktails). I had completed my studies as an Occupational Therapist and commenced studying a degree in Medicine to eventually become a doctor. I had the strong desire to study medicine after going on my practical experience as an OT in both a hand therapy unit and especially a neurological rehabilitation ward. I wanted to know every detail of the persons medical history and how and why everything happened. It's quite ironic now that I am lying here on a neurological ward where my ambition for further study started. As for now I am still technically in the course. I have somehow managed to complete a number of subjects online & with little face-to-face time whilst I have been an inpatient, from my hospital bed. I really don't want to loose my course as it's so competitive to get in. I guess for now I'm still hanging onto the hope that sometime in the future I will get well enough to be physically and mentally capable of completing this dream.

My beautiful family are my rock. They've all endured so much as a result of my illness. I am certain I could not get through this without each of them. All five of them are part of my team and help me everyday to keep hope and belief that things will get better. My mum is an inspiration. She has managed to be at my hospital bed almost every single day without fail. She works full time as the
leader in a high pressure job and is always on the go. I actually don't know how she does it all. My dad, another amazing man. He's beyond caring & is always worrying about me. Between his full time work shifts and mums work he visits me any day he can, even when tired after night shifts etc. They both live at home with 2 of my siblings whilst my other sister lives away. I am the eldest of four children & next in line is my brother 'Bluey'. He's  24 & also studying medicine in his 2nd last year. He is always on the go and we can't keep track of him because he's either at soccer, studying, at his girlfriends, at work or god knows where! He often spends his days at the hospital I'm in so I always enjoy him to stop in & say hi and make sure I'm ok. His visits always break the long days up. Next is my sister 'Gretel' and she is gracious, kind and gentle. She is 23 this year and is also in her second last yr of medicine but she lives about 2hrs drive away & attends Uni there. She is gorgeous looking with a kind heart. We speak multiple times each day on the phone and she comes home to spend time with me almost every weekend of which I appreciate so much. Finally the youngest of us all is my 20yr old sister 'Evelyn', a very petite little thing and looks equally as beautiful as my other sister. She's in her final yr of study to become a podiatrist and is looking forward to the real world. Evelyn has always beat to her own drum and been so very creative & artistic and ambitious. She lives at home with the family.
Our last member of the family is my beautiful dog Missy. She's the most cuddly dog ever and is totally content just being around people. She is not fit and loves her treats & has occasionally been known to waddle through the corridors of our house.

For now I take each day as it comes. I embrace the positives as much as I can and try to push through the negatives and make them work for me. Recovery and healing is hard work on so many levels and I will continue to persevere in hope for the next good day to come...

Please feel free to check out my blog and read a bit more about my primary conditions. If you want to contact me feel free to msg or email anytime. I'd love to meet you all!!

Thanks for reading xoxo