My Best Friend 'Art'

My first attempt at keeping it real ... the following is the edited version from a speech (yes another one!) I gave at the AFV for new members. I know that a few of my fellow 'survivors' read my blogsite, so I will quietly dedicate this post to you all. Otherwise, if you didn't know this about me, please read on.

There is no doubt that there are three people in my relationship with my husband - my husband, Luke, me and my best friend, Art. Art is my chosen nickname for my condition, rheumatoid arthritis. Some days I love Art, and some days I hate him, and I've never been too sure why I denoted him male!

My story of Art began when I was only 18 months old and was diagnosed with juvenile rheumatoid arthritis. This condition continued to penetrate my bones up until the age of 15 when it decided to go into remission. In my early twenties, I am now 31, Art returned as rheumatoid arthritis and had moved to my wrists, elbows, hips and knees. It was at this stage of my life that I became distinctly aware of the effect that Art had on my personality, body image, pain threshold, netball career, and most importantly, my mind.

It is amusing, and also somewhat heartbreaking for me, to remember that at this time I wrote an article for a magazine. The article was titled, 'Ride the Wild Tiger'. A quote from this article read: 'I've learnt to ride the wild tiger. I could talk a lifetime away about how the pain - a word so often written in conjunction with arthritis - has emotionally affected me, but this would let the tiger's paw encase my head. Instead, I have decided to take the tiger by scruff of the neck and ride it with my bare hands. The ride at times has not been a very stable nor fast one, and I've often grimaced with pain as my hands were shredded to the bone. But I have always managed to ride high, once again, on the tiger's rippling back. I am the only person who can decide how my arthritis is going to affect my life.'

Arthritis is just not a physical condition, it is a psychological test on a daily basis. I do not want to down play the pain, but I cannot deny the mental and emotional battle of the wits every day.

These are just a few of my daily decision:

• Do I have coffee inside or outside the cafe? What if my fellow coffee drinker wants to have coffee outside?
  
• How much more shopping can I carry before I place a load in the car?


• Who can I ask to open my water bottle?


• What should I wear today to keep warm?


• Do I ask for special consideration in my university exams?


• How can I explain to my employer that I needed a 'day off' just to rejuvenate?


• What would be the best part of the movie to take a break, get up, go for a walk? The toilet is always a good excuse.


• Can I tell that person to stop complaining about their aches and pains from running?

And then there are the daily to weekly rituals in order to survive:

• Never have less than 8 hours of sleep.


• Exercise every day in order to hinder stiffness.


• Weights three times a week in order to strengthen muscles.


• And a partner to this, do not gain too much weight in order to keep as much pressure off my joints as possible.


• An appointment with my physio to massage out aches and pains.


• An appointment with my massuers to rub out the stress in my back.


• A hot shower or spa morning and night.


• A glass of red wine never goes astray.


• Ask the assistance of my husband to help me dress.

And of course, the lifetime decisions:

• Do I drive a manual or automatic car?


• Should I have children sooner rather than later?


• When, and if I have children, will be wrists be able to hold the child?


• Do I tell my employer about Art?


• Should I move to Queensland where it is warmer, but away from my family?


• How much do I let my husband in?
  
• When the going gets tough, will family and friends still be around?


• How much do I tell people?

And yet, there is the deeper psychological impact:

• Feelings of loneliness.


• Emotional downpour of tears that cannot be explained.
  
• Exhaustion.


• People misunderstanding the impact of Art - the 'look so normal' syndrome.


• Mood swings.


• Weather pain swings.

There is a reason why I was a chosen one to meet Art. In many ways I thank Art for making me the person I am today. He has invaded my bones, my mind, my brain, my consciousness, my unconsciousness, my tissues, my organs, my blood and has persisted to stay. Art has taught me all about who I am today. I despise the label 'arthritis sufferer', and much prefer 'arthritis survivor'. And I will continue to survive, in whatever fashion, as long as I have my best mate, Art.

Postscript ...

Since the birth of Amaya, my life with Art has reached a whole other level. The pain is like nothing I have ever experienced. It's even less predictable, more aggressive, and amazingly enough, totally mind numbing. It shakes me to my very core. I turn into someone I don't know - and don't even like! Perhaps Art is jealous that Amaya came along? Well, as far as I'm concerned, Art is going to have to take it like a man. He is going to have to toughen up and learn to deal with another member in our family. He is going to have to shut up and put up because the little girl who melts my heart is here to stay too.