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Chronic Pain

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We walk a mile in your shoes. WE CONNECT WITH YOU we listen, offer hope, support and accept YOU.

It is my ten year anniversary of the work accident that caused me to live with chronic pain. I know the date well, as I wrote it numerous times on all the workers compensation forms, the result of being in "the system" for years. Some people find it strange that I would want to remember such a date, perhaps they find it depressing, or they just don't want to think about what life could be like for them, if they were in pain. But to ignore it, I would be ignoring a part of myself. It is a part of the richness of my story, a travelling companion that I didn't want. In the end, I learnt how to become friends with it. It has made me who I am, for that I have much to be thankful for. Ten years is a feat that deserves celebration! It could have been much different.

That day, ten years ago, my world changed radically from that of a twenty year old free-spirit, to a person that lives with pain. As a result of a nerve injury to my right arm, I was effectively left without a dominant arm. They have many names for it, neuropathic pain, CRPS, or as I like to call it: CRaPS! Whatever the name, the result was continual pain, as well as a physical impairment. A condition that medication did very little to relieve. I became a number in the compensation system. The person I was before, my identity; was stripped away as I became a case number, the girl with the arm impairment. They were difficult years, I felt hopeless and in despair. In many ways, the system can at times make the experience of living with pain much worse. It's hard work trying to justify why the treatments have no effect. At times, I felt like it was my fault. It became very tiring, explaining to people what had happened and that it was a permanent injury. Well-meaning people often tried to suggest this treatment, or that therapy; I don't think they understood that I had already tried most of what they said. Some gave small improvements, but many had little effect. There is no magical cure.

I had youth on my side. Young people have a flexibility, a natural exuberance, a fighting spirit. I struggled with doing normal things, getting dressed, cleaning my teeth. As frustrating as it was, my mother knew how important it was to regain independence. She helped me in the search of innovative solutions to problems I had; I went to the Independent Living Centre and found some useful gadgets, some of which I still use today. It took me probably two years to be able to write properly with my left hand, I was so proud of myself when I finally saw writing that didn't look like a six-year old's, and was at least as good as anyone elses!

Coralie, with the Chronic Pain Group (back in those days), was also a wonderful support. I have her to thank for many things, for she was one of the good people in "the system" that truly cared about making your life better - with the pain. I started to draw again, though I was often frustrated at the results because they were not the same as before. I am a perfectionist, something that is a struggle to overcome. What was truly interesting, when drawing self-portraits I couldn't seem to draw my arms. I didn't even notice they were missing in the finished drawings, until Coralie pointed it out. It's incredible how the brain works, the picture of my arm just doesn't seem to be picked up by my brain anymore. If I see where my arm is, I can control it; when it is out of sight though, it just flops a bit. I noticed this a lot while dancing.

To regain movement in my arms, Coralie suggested tai chi. I couldn't see myself doing that, though my mother suggested we try a belly dancing class. This was a life-changing. I became so passionate about belly dancing, it bordered on obsession. I practised many hours a day, sometimes to breaking point. I became fixated on getting my arms to move properly again, so that I could disguise my pain better. If I could walk around without people noticing I was in pain, I felt in control. I hated the attention it brought with it, perhaps that comes from being in "the system". It paid off, the dancing was a success! I performed at many parties in Australia and overseas. It was a way of escaping my body, escaping the pain. I would let the music dance my body. For that short time, I wasn't the girl in pain, or the one with the bad arm... I was a dancer! Nothing else mattered.

The years go by very fast. Once the compensation stress was over, I thought everything would be better. The reality is, the pain still remains. Nothing really changed. After fighting for so many years, nothing was different. I was still dependent on my mother and family, I was still unhappy. Before I had the accident, I was a traveller. I travelled a little bit after the claim was over, but I returned to continue university. My wonderfully supportive mother suggested that I go travelling again, to help me build my independence and confidence. It seemed so natural. I made the spur-of-the-moment decision to go travelling, got myself a train pass and that was it. I was finally free...

I realised that I needed to somehow work with my arms, to work with the pain. While travelling, I had no other choice but to do what I had to. I had no time to give my pain any attention. I was too busy trying to figure out where to stay, how to read a timetable in a foreign language, or how to remain standing on the ice without slipping. I would bargain with my pain, as though it were a screaming child. "I need you to be quiet, just let me get to the hostel. I will give you attention then, all night if need be, but I need you to be quiet until then... just five more minutes... just five more minutes..."

There were also times when the flare-up of pain got so bad that I would spend a day or two somewhere, curled up in a ball and crying from the pain, but it was temporary. I knew that I would get myself under control soon enough and have my normal pain level back. I was so fortunate to meet special people along the way who took care of me during those times. There wasn't a lot they could do, though luckily I had already explained my condition to them. One of my friends was panicking, wanting to call an ambulance... I had to explain that this was normal, it would settle down, I just needed some time. It's hard to explain to people the level of pain I live with every day. I had become accustomed to hiding it, that people were often shocked when they found out. One of my friends told me that I was being evasive, people ask because they are curious and they care about me. They couldn't imagine what it is to live in pain all the time; they certainly couldn't imagine backpacking solo across much of Northern Europe for six months, with it.

As I travelled, I got to know my pain better. It felt more comfortable to think of my pain as a screaming child. It was something I had no control over, but something I could bribe, or try to reason with. It became something external to me; no longer a cage I was trapped in, but one I carried alongside me. I had so many years ahead to live with it. There was no point in wishing I could change something that was simply a fact of life. As the years went on, I forgot what it felt like to not have pain. It's the one part of my old life I can't remember properly. It's now all I know. I can't let it become an excuse to not do something, because then the pain would win. All I would have in my life would be the pain and lots of missed opportunities. That would be a sadder way to live, feeling powerless all the time.

I have made another home overseas now, I live in the Netherlands with a loving and supportive partner. I ride a bicycle, like any local. I modified my handlebar so that I don't need to grip it with my bad arm, but I can still control the bike. That was something I really did not think I'd be able to do, but I did it! I had a problem, I fixed it, life went on normally. I got a job, and lived quite well with the pain.

However, living with any chronic condition has its ups and downs. It's a grand cycle of acceptance, slipping over and hitting the ground and finding the way back up again. I started gradually getting worse. It was a fact I didn't want to admit to anyone else, not even to myself. I thought I had won the battle, but I was struggling with the little things again. The pain was interrupting my sleep and being sleep deprived for months made everything a lot worse. My life became unbearable, my own private hell that I lived, the pain was unendurable. I had reached eight years of continual pain. I decided I couldn't do it anymore. I had done everything right, I had achieved so much, but none of that mattered. I didn't have any energy to fight anymore, I couldn't live with the pain. I wanted to die, to end the suffering, to end being a burden on my loved ones, who didn't deserve the mess of a person I had become. Some nights I wanted to scream, I would wake up crying out in pain. The pain crept into whatever dreams I was having, so sleep wasn't even an escape. Sometimes I wished that I would die in my sleep just so the pain would stop. I ended up back in Australia, ready to give up the life that I had created overseas. I gave up on everything.

I was very fortunate to get an appointment with one of the top pain specialists, however even he had no easy answers. I made the decision to take medication, something I had fought against for years. I felt that I was weak, that I just couldn't "hack it". I had a very harsh and unforgiving view of my world. It took me some months to get better, return to the Netherlands and to find myself again. I had to re-balance, become more bilateral, because relying on my left arm for everything created problems in the only arm I had left (pun unintended)! I am very lucky, to have so many good people around me who have supported me throughout the journey. They never gave up on me, even when I gave up on myself.

It's quite a journey, making my life with the pain. I no longer see it as a purely negative thing, for it has given me so much. Sure, it's annoying; when I flare up I still struggle sometimes with the realities of what I live with. But, if not for the pain, maybe I would never have felt that desperate need to escape my life years ago, perhaps I would never have travelled as much as I did. There are so many aspects of my woven tapestry of life that if you took out the pain, it would be like removing the thread that held it all together. It would come apart into just tatters that have no cohesion, no reason, no focus and no appreciation. Living with pain has allowed me to achieve more than I every thought possible. It has been part of my strength, the constant battle made me much stronger than I ever thought I could be.

Just recently, I have returned to a childhood dream. I used to want to be a dentist when I was a child. However, I wasn't mature enough to deal with the blood and needles. After everything I went through with my arms, I am now able to deal with that which made me uncomfortable before. I am working as a dental nurse here in Amsterdam. It is a job that requires a certain degree of ambidexterity, something I have well and truly mastered! Its non-repetitive movements are ideal, a lot more suitable than working on a computer. There is a great deal of satisfaction I get from working with my hands, the part of my body which used to be the enemy. After living with pain for ten years, I have a good empathy for the patients we see. I have greater confidence in this job than I ever felt in any other job. I am so happy that I found something that I can physically do, something that I feel so passionate about. I have returned to writing and to painting, after lacking a focus of my creativity for some time.

If you had asked me ten years ago, I would never have imagined where my life would have taken me. I know that, like it or not, the pain is with me constantly. But I am a master of my pain, it no longer rules me. I know I can do anything I set my mind to, achieve whatever I desire. I know that if I fall again, I'll get back up soon enough. Though at times the pain made me a horrible person to be around, it has also made me the content person I am today. Without all the bad times, I would have never know what true happiness feels like. It IS possible to live with chronic pain, it IS possible to do whatever you want despite the pain, and it is certainly possible to live with the pain AND have a sense of peace with what life has given you. And that calls for a celebration every single day



Chronic Pain Australia

Sometimes the journey TAKES YOU TO A PLACE UNMAPPED. Anything is possible

-Chronic Pain Australia

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PO Box 425
4 Melville Street
Baulkham Hills, NSW 2152
Baulkham Hills, NSW 2153

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