Hope (Hold on Pain Ends)

I wrote the below piece last year during a particularly difficult flare. Its an insight into what my reality can truly be like. It is also published on the Arthritis New Zealand website which was such an honor.

When I close my eyes I envision a vibrant, fair skinned twenty two year old woman.  A woman with blonde hair, sparkly bright blue eyes, an unforgettable warm beaming smile. She is dressed in a colourful dress. She is the kind of girl every girl wants to be. Loved by all, always smiling and has this tremendous ability to fight adversity.

When I open my eyes I see a pale faced twenty two year old. A woman who has battled and fought for survival since the tender age of three. Her eyes are red and puffy from the tears that won’t stop falling. Her eyes closed off to the world, closed tight to hide the pain. Her once prominent smile has dissolved into gritted teeth. Her breath is shallow and fast. Her face round and puffy from the increase of prednisone. Her hands shake her heart races as she looks down at her once functioning body. She struggles to straighten her hands. The sight of her finger joints being stretched and pulled out of place from years of tortures’ pain. Fingers that should be straight are bent at sickly angles. Perhaps the hands of a 90 year old lady? Surly not a 22 year old? The next unsightly joint is the 18cm scar on her knee. Perhaps from a shark bite? Surly not damage done by her own body!

Pain is everyone’s nightmare but what happens when pain is your every day companion?

Pain is what happens when she attempts to get up from her bed. Her wrists and fingers ache as she pushes herself up. Her hips scream out when they are swung over the bed. Next comes a great big breath – a breath to psych herself up. The chants begin in her head ‘you can do this’ ‘BREATHE’ ‘as soon as you have done this you can come back to bed’. She reaches down and grabs her crutches. On the count of three she uses the quickly vanishing energy to get to her feet. The room becomes dizzy as she catches her breath. Pain searing through her joints. It takes every bit of strength not to collapse back down onto the bed. The next step is the so called ‘normal’ ability to walk. Crutches first then legs. She hears a noise only to realise it was her own grimace. Finally the bathroom is in sight. The thought of continuing out to the lounge is too distressing so her body crumples back into bed. Body shaking from the pain. Maybe tomorrow will be better? But what happens when tomorrow hasn’t come and your spirit becomes weak and the fight becomes too much. There is no magic drug, no button to push to eject yourself from your body.

Emotionally she is hurting just as much. Life has been flipped on its head and what control she once had is now taken over with pain medication and tears. It’s the tears that scare her. She knows things are bad when the tears start. When the image of her former self seems more like a memory than a reality. To her tears mean that Lupus has finally got to her. Lupus has broken her. Lupus is in total control. She is only a host now. She is filled with sickening anxiety. Every decision she now makes has the ability to cause even more pain. There is frustration, anger, disappointment and grief. But most of all she is scared. Scared of the power Lupus has. Its ability to cause such pain and distress. Such disability and despair. She is scared of the amount of medication she swallows daily to try receive some relief. She is scared about lupus upsetting those she loves. Her family and friends having to see her struggle.

Even through it all the tiny voice keeps telling her to hang onto hope.

Hope that the pain will decrease.

Hope that her mobility will return.

Hope the medication will provide relief.

Hope her smile will return.

But mainly hope that tomorrow will be better. 

Life changing words

"Your daughter has Systemic Lupus Erythematosus" 

Six words that dramatically changed a young families life.

I believe all parents have dreams of how their young child is going to grow up in this world. Will they be good at sports or singing? Will they be tall like their mother or have their grandfathers cheeky smile?

My parents would have NEVER imagined that they would be sitting in a specialist office being told that their three year old daughter has a chronic illness that will dramatically change her life path.
For one the odds of not being diagnosed with Lupus were dramatically in my favour. Research indicates that lupus is commonly diagnosed during the ages of 15-35 and is more common in those of non European descent. Of course I have learnt now that I seem to be the exception of that rule.

My life so far has been anything but easy. Every day holds a new challenge to overcome and Lupus always has a tight grip on me. From age three I had to learn to start taking many medications and my innocence of being a child was replaced with the uncharted  territory of the medical world. Where my wellness and ability to function was based on blood results and the movement of my joints. Where learning my ABCs were replaced with learning about SLE (Systemic Lupus Erythematosus).

Twenty years on and lupus is still throwing its battles at me. Every day there are new obstacles to over come but these always bring new learning and continue to shape me into the person I am today. Through the tough times there are always blessings and I am blessed with the most incredible people to share my life with.  
So why start blogging? I want this to be a place where I can come and truly express how I am feeling. A place where I don't need people to fix me or feel sorry for me. But rather a place that I can freely let out what is burdening my heart. A place where I don't have to fake smile and say 'I'm Okay' just to please other people. I want to take my experiences and challenges and share them in the hope that I may help one person to not feel so alone.
So welcome to my blog and thanks for stopping by,
Livvy xxx