Me? Sit down

I am a Gamileraay woman who wants to leave this world better than it was when I arrived but we are going backwards which makes me angry and the result is I have a lot to say and sometime, the truth makes me unpopular.

I am also a suffering optimist, I try to see positivity in things but find that is generally only my family that provides the positivity in an otherwise politically depressing world.

Stick around and nod your head, join the discussion and give me a piece of your mind.

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Wednesday, 30 September 2015

Chronic illness and its crippling clutch....and loving through it.

You've seen the memes shared around about chronic illnesses and invisible diseases, maybe you know someone who has one, maybe you suffer from one yourself, maybe you have no idea what it is but you empathise so you'll like or share the sentiment.

The memes? They're true - but how can they capture the essence of what chronic illness is like? How can they encapsulate the numerous types and symptoms? They can't.

Neither can I.

What I can tell you is I have a sister. She is the baby of the family and from birth she has been the cutest kid with limitless life spark and a mischievous side that never resulted in discipline because her cuteness and grin wiped her record clean. 

I remember when she started primary school, my brother and I fought over who got to play with her and integrate her into our friend group because she was just that rad.

All throughout high school we were close, we would hang out in each others' bedrooms and roll our eyes behind our parent's backs together. We would strategise together to ensure we got the takeaway we wanted on lazy nights, con Mum into calling in for a DVD and we would cause MAYHEM in the grocery store. If she's reading this - she will be nodding and laughing right about now.

Things were tough when, at the age of 18 I moved to Sydney for University. My parents were emotional at the big step but I really felt like I was leaving her behind which was the hardest part about pursuing my dreams. I felt like she was my baby because we spent so much time together and I was her confidant. Whenever they visited me at University my sister would stay with me in my little single bed while Mum and Dad stayed in a motel and we would relish in our special bond and talk all night.

Everything changed though.

I was home on uni break 12 years ago and my sister had recently returned from a New Zealand ski trip. She was tired, sore and unable to get out of bed. Most noticeably she was not herself - not my bubbly sister chomping at the bit to spend every waking moment talking my ear off.

I insisted on the doctors when the excuse of travel tired didn't sit well and Mum said she was glad because she knew something wasn't quite right either. When the doctor initially said it was Ross river fever and she needed rest I was an arrogant jerk and disagreed and after more testing - she got the news of being diagnosed with Lupus.

We had no damn idea what it was. No idea what was to follow.

I won't detail the last 12 years of treatments but I will say that she has had chemotherapy numerous times, is on anti-rejection drugs, steroids, high level pain relief. She is in kidney failure and early stages heart failure. Her hair is gone most of the time from chemotherapy and her skin is inflamed and painful. Her joints are that of a 90 year old with rheumatoid arthritis. Of a morning she can barely move and most days she cannot keep her medicine down due to CONSTANT vomiting. Years and years of vomiting. 

Her life is pain - literally and metaphorically. When her friends were paving their paths in life and partying and finding out who they are - she was confined to her home just fighting to be able to continue existing. She wasn't able to study, work, travel or experience the night life many of us take for granted.

The hardest part for all of us that love her is her struggle to keep smiling - after 12 years of fighting and now enduring more chemotherapy - her exhaustion and emotional pitfalls are understandable. Things that may seem trivial like the ability to simply go outside and enjoy a little sun in Summer is out of reach for her because the last time she was out in the sun her body shut down and she went into arrest twice on her helicopter ride to RPA in Sydney. Being able to style her ear length hair that has only started growing back after the last chemotherapy only to feel it coming out in chunks once again.

It would break me, anyone really, but she continues to amaze and inspire me. I love this beautiful human for all of her heart despite the struggles. She is incredible and I am both proud and awed by the fact that she's MY sister. 

A few weeks ago I felt that something was off and prodded until I cracked through her exterior strength and she told me she wasn't sure if she could get through much more. My baby sister was struggling so bad and the thought of this made me physically ache. My partner (who is a god among men) pushed me to get up there and just hold her, and so I did.

My baby sister smiled again and selfishly, I relished in the knowledge that I could bring out her smiles. I didn't do anything special but I was able to hold her, kiss her, massage her and laugh with her. Distract her from the battle and get her on track for more chemotherapy.

It was confronting to see someone so dear so sick but when I saw my Mum and her strength and love that radiates to my sister I about broke. I have no doubt in my mind that my Mum would pull the illness out of my sister and accept it into her own body with a smile if she knew my sister would have some relief.

I never really 'got' it before but as a mother who sleeps beside her own daughter when she has the flu in full blown neurosis - I cannot fathom how my Mum and Dad have hurt for the last 12 years seeing their beautiful baby struggle so.

When I was there I saw the quiet and solid support of my Dad who can sense when my sister needs distraction or a laugh. His comfort and safety is instant - I felt it the moment I sat in his car when he picked me up - the ultimate protector of the family - unable to protect his baby from this dreadful disease. Imagine the pain he has to endure because of this helplessness - it's not his fault but there is nothing he can do to help her medically and that is a struggle for such a strong Dad to ensure. I saw the warrior woman that my Mum is; she cares for my sister so diligently and lovingly that I stared in wonder. She had to inject my sister a few times during my visit to ease her vomiting and even though I could see in her eyes how badly it pained her to stick a needle into her daughter, she struggled through it to provide relief.

I can see how deep and consuming Mum's love for my sister is. It is tough, she will never ever admit the toll it's has taken on her nerves and psyche to see her chronically ill daughter battle for the last 12 years but those who know her closely can see. There is a fragility in my Mum now that I can only see in the smallest windows of time because she bravely hides her own feelings to protect others and care for others but when I see it - it strikes me in the gut.

These two women who I have laughed with, laughed at, fought with and screamed at, cooked with, cleaned with, danced with and smiled with are powerhouses.

Their lives have irreversibly been altered by a disease so insidious that it kills everything healthy slowly and painfully and removes joy from the lives of the sufferers who simply dream of a day, hour or even a minute without pain.

Chronic illness changes people - it changes families.

Chronic illness is not understood by those who aren't in the trenches with it.

Chronic illness is a lifetime on the sidelines, battling for moments. A life not lived but endured.

The sufferers and their families are fucking warriors and I want to use these words to tell you of my love for you all, my respect for your fight and my wish that more people learn about chronic illness and urge our government to re-invigorate medical research funding so it is not so heavily reliant on private donations.

To my Mum, Dad and Sister - I love you more than I am ever say and wish I had one drop of your strength xxxx

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