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.