Arthritis

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 No matter how often I speak, I still get nervous! This one tougher than normal as it was so personal. My brief was to share with 120 people my story of how I received the Arthritis New Zealand Premier Award last month in Auckland. It was such an incredible honour to speak after dinner. I was able to weave my thanks and enormous gratitude in to my delivery. It is amazing to reflect on all the work I love. It was amazing to be able to share how I got to stand on the stage. It was wonderful to acknowledge my great nana, my nan and mum for all the knowledge they passed on to me. And I was able to thank with all my heart those who work behind the scenes including Arthritis New Zealand, my Rheumatology team, my incredible GP medical team, the drug companies and researchers who keep finding the next treatment to keep me mobile and active! Thank you also to my friends who stuck by me even in my darkest and confusing days, my family, my crew and of course my soul mate and partner in crime Riwai! The Arthritis NZ Premier Award is a team effort and definitely one of my life highlights 🙂

  

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Incredible!  I woke up this morning and for the first time in 13 years (almost to the day) there was no prednisone, codeine or tramadol  in my hand.   My methotrexate hangover was mild and my inflammation and morning stiffness only lasting an hour!  Incredible…. I can handle the new swollen finger and the new pain in my shoulder, this is my body recovering from my fall a month ago,  and the bursitis on my knee will mean I will still take my crutches out today…. Yet there is hope and that hope is what keeps you going.

Let’s face it; rheumatoid arthritis is a pretty crap disease, any arthritis is really.  It’s not popular, doesn’t get much media, and when it comes to funding it is a struggle.  Living the life you desire is seriously compromised. The impact the disease and medication side-effects has on day-day functioning, relationships, energy and living well is like being on a rollercoaster ride at the speed of the european autobahn, and without notice the highs can be wiped out like a high speed crash without warning!

That’s why you have to celebrate the good days and do what you can, when you can.   The toughest part of the disease for me is never knowing what the morning will bring, the unpredictability causing the most distress as you can never fully commit to functions or plan too far in the future as that day might be one of the bad days.

I don’t want to bang on and compare my illness with anyone elses, and I certainly don’t want to get into a debate about which disease is worse to have.   I just want to put it out there that when you get RA  young it is like a double edged sword, it’s a relief because it won’t kill you and you have plenty of years to learn how to manage it, but it is also tough some days because for  you and  your support crew, those closest to you there is also no end.  The unpredictability effects everyone around you too.  It is tough for everyone and just as you work out your new normal something changes.    Symptoms come and go in waves, working out the impact for you is challenging enough, but we also have to ask for help, this is tough and receiving help is tougher.  Your support crew are willing but communicating with them your needs, especially if the symptoms are new this can be heartbreaking for you all.   We must remember our support crew have no end either, and this is more challenging as we begin to look well but our functioning is still limited.

The good news is we are in one of the best technological ages and a future with RA looks brighter.  When my Nana was diagnosed she was prescribed asprin and bed rest – 50 years on and I have been prescribed infusions and exercise.   Around the world there are superdrugs, super research teams, rheumatologists, surgeons who are moving ahead with management plans for the disease – The positive changes have been phenomenal in my 20 years with the disease.   I believe there is always something just around the corner to slow the progression, and make sure that I am not painfully destroying myself from within, the crutches give me independence and the wheelchair is far off in the distance!  Who knows what medicine, my tenacity and the support of my A team will be able to accomplish by the time the wheelchair is needed – if at all!

Until then I am am off for brunch, to enjoy some time with my sister and hubbie!  Two of my team that have been with me in through the tough times – lets use this window of feeling better to good use! …. Cease the Day Carpe Diem!

Ps Thanks for reading!  You are all incredible and my hope for you is today you get to do something that makes you smile too!

C x

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kind·ness 1.the state or quality of being kind of a good or benevolent nature or disposition: a kind and loving person. considerate, or helpful; humane behavior:
January 2012 is a month that I will never forget for the most wonderful reasons.   I discovered my Knights of Kindness.  As the clock ticked over to Midnight to January 2012, I shared a lovely moment with my family and decided that this year would be my best ever, just like my favourite movie it would be a year of Hakuna Matata – means no worries for the rest of our days.  But sadly in just a few days I could feel my body shutting down, severe pain was creeping back, like toothache through my entire body.   Those dark memories of sleepless nights, hot sweats, lack of strength and extreme fatigue, lack of appetite were back, those signs I wish I could ignore, so I pushed through denying the inevitable until the pain became more difficult to hide.    The rollercoaster had begun, the crutches were be dusted off, my frequent flyers memebership to the Outpatients waiting room renewed and my good old orange disability pass was ready in the car window once more!  Bugger!  RA Flare up – and just when this year was looking so good.
I have met over 25 health professionals this month.   As we medically get this disease under control it has become more important for me to learn about my self and build on my positive attitude I have developed through my wellness.    When we are given news we so often forget we are in control of our own Kingdom.  We can choose how we act.   Aesops fable is that no act of kindess no matter how big or small is ever wasted.   Aristotle’s philosophy on kindness was helpfulness towards some one in need, not in return for anything, nor for the advantage of the helper himself, but for that of the person helped.   Kindess is also one of the Knightly Virtues.    So I have armed myself with smiles, manners and hugs.    In order to rule My Kingdom of Me including my mind, body and spirit I need to lead the charge and show humility, friendliness and kindness to all I come into contact with.  As I take out my finest horse (well shiny red crutches) and lead the charge I have discovered the world is full of modern day Knights who just as in the High Middle Ages display a set of virtues to get me through.  I found a calvary of Kindness and amongst them one in Shining Armour – a perfect way to start Valentines Month and my knights birthday.    Thank you Mr Grace and all my modern knights secretly disguised as as LeapStars, family, medical professionals, strangers and supporters who will help me save my Kingdom and fight my latest battle with Kindness 🙂