Friday, 6 January 2012

Looking out for a new outlook - new year, the dawn of change...

New year is one of my favourite days of the year. It's the day of resolutions, of dreaming of what the future will bring. Of hoping that this year will top the last. Usually I don't do much at midnight, but my favourite thing is getting up at the crack of dawn to drive to the beach with my mother in Australia. We stand there in the the semi-light, watching the sky get brighter and brighter. All of a sudden, a sharp shard of sunlight would break over the mountain and paint the ocean in shades of orange and yellow. 

Getting up for the first sunrise of the year was always something special with Mum. We love the beach, and to see the very first time the sun graced the new year; before it hit anywhere else in the world (well, apart from New Zealand and the other Pacific Islands on our side of the date line!). It always brought me a lot of hope for what the new year would bring. Of course, sometimes the new year brought in more difficulties. Nonetheless, I always had a small wish for the pain to go away; that maybe this year would bring remission from my symptoms and less pain. That has never happened. However, from the sunrise of 2011; it brought with it a big change in my attitude. Passing my 10 year mark really changed how I viewed my life.

10 years was a huge hurdle. Once I reached that; I knew that life would never be so difficult as it was during the first decade. I know myself a lot better now; I see how far I have come. I've done more things than I could have ever dreamed of. I know my condition much better than anyone, doctors included. I am finally in control - not of the pain, but of how I manage it - I am in control of my life!

However over the past few months; my strength has been tested. I have been really struggling for a while. Mentally, I feel powerful but it is a very hard fight against the pain. The mind is sharp but the body is broken. More nights of tears, more asking the help of my dearest one; try as I might to do things for myself. Sometimes the veils of hopelessness have been working their way into my days. It's hard to remain optimistic when the pain is screaming so loudly. Sometimes I just want to scream. No matter how loud I scream, it will never drown out the pain.

The symptoms are getting worse. I can't pretend they are not, like I did last time. It nearly destroyed me with all the effort to lie to myself and others. I am struggling right now with terrible allodynia, where I cannot stand anything; clothes, sheets, or people touching my arms. I get pains in my legs too, though intermittently and less severe. Sometimes I get patches of the allodynia on my thighs, which is uncomfortable to say the least. More contractures, "dystonia"; which is where the muscles tense up and shorten. It contorts my arms and body, affecting how I walk; dropping my shoulder and making my hips unbalanced. My shoulder rotation is very limited. I end up all crooked, my hand curled up like a claw and my arm bent painfully into a wing - my chicken wings!! I get strange twitches in my muscles, sometimes you can see it jumping through my skin like there is a bug underneath.

My left arm gets worse from overuse, using it for everything. It always makes everything more difficult. When I have a good left arm, I can do everything. When both arms are buggered, it makes simple things a huge struggle. That perhaps makes it all the more difficult mentally to deal with.

I've also been swearing too much! There is something pleasurable about uttering curse words that somehow, makes the pain more manageable. Of course, muttering swear words to myself is never a good look; like one of the muttering old ladies with her cats and shopping bags. It makes me walk like a cripple, body contorted from the pain. It really has turned up a notch, I can't seem to get my pain levels below 8 at all. Months of this... I hate the word "agony" because it is an emotional word, a negative and helpless word. But it is my reality.

Recently, I decided that it was time to fight again. I go through stages where I cannot fight anymore, I can't bear the constant failures that come with trying new things after having the hope that it might be the thing that makes the difference. It wears on you mentally. As a perfectionist, I don't take failure easily. I decided to start coming off some of my medications, and to try a new one. Sounds counterintuitive, taking less when things are so bad; but I feel that the old ones are not offering the stability that they used to.

It was a difficult decision to take medication in the first place, after living with this condition for so many years without it. I knew from the start that most medicines did very little, so I went without. It was very hard for me to change and not see it as weakness, accepting medicines. There is no medication that takes the pain away fully; but it gives me the stability that I desperately needed; to make my life with the pain. Stability is essential. If the pain levels are constant, you can do so much more. The fluctuations are what makes my life unbearable. 

I started retraining as a dental nurse over here in the Netherlands last year. I love it, it gives me a lot of satisfaction to see that there is a world out there of normal pain; pain that can be cured and relieved. It gives me hope to see that we can help our patients and make their lives better. It suits me a lot more than working behind a desk, or in law - a career path that rarely makes lives better. It is a job of varied movement; where I can work mainly with my left arm, giving my worse arm a break. Though over the past months, I have had doubts. A deep fear that maybe I am wrong; that I may not be able to sustain this job either, in the long term. Another dream that could end up in tatters; not because I do not have the intelligence, or ambition, but because of my stupid arms. 

There is nothing more frustrating than having that drive to succeed and the body that simply won't do what I need it to do. Recently, I gave my doctor a long and detailed report on my condition; what symptoms I have; why I believe it is getting worse. It was important for me to demonstrate that what I am experiencing is more than a simple flare up, and why.

It was also good to see all the things I do to try to stay on top of it all. I have so many tricks up my sleeve! I am so used to the pain that it can be difficult to see the subtle difference between a flare and the worsening of symptoms. It is sleep that makes a difference for me. When I notice my sleep is terrible, that I cannot stay asleep during the night, woken up by the pain; that's a clear indication that something is wrong. Needing assistance for simple tasks, relying on my tools more. These are also clear signs. 

My dear fella, my partner, is as much a saint for knowing how to handle me; as are my dearest mother and brother. These very special people know how important my independence and normality are for me. They don't give it attention, they don't baby me, they just help where it's needed and get on with life, no big deal. They don't feel sorry for me, perhaps that is the most important.

Often, there isn't much they can do anyway; except be there for me, make a cup of tea or dinner.  My dear fella sometimes just holds my left hand, or plays with my hair as I sit there fighting the pain with all my strength. He helps me with my massage, stretching out my arms to try to lengthen the muscles again so they won't curl up. That physical contact giving me energy, he performs Reiki on me without even trying. It gives me so much more than he realises. Something so simple can be the biggest help. We all make jokes about it, seeing the lighter side of something that could very well destroy me if I let it take over. 

I cannot imagine how others view me. How it must be for him; to see his loved one going through this. To not be able to hug me, or touch me. How I would love to be able to do such a simple thing as to shake someone's hand, or to hug someone without it hurting. I want to look for work, but how can I job seek for such work when I can't even shake the interviewer's hand? How can I look them in the eye and tell them that I can do this job, when I'm struggling to button up my jacket or eat with a normal knife and fork? I have worked so hard for this, I cannot afford to lose it when it is so very close now. 

That is why 2012 will be a good year for me. I am going to change my medication fully, I am going to explore new options again. What will be different is that my attitude is different. If surviving 10 years has taught me anything, it is that I can do this - I can make my life with the pain. I am going to explore these new option with a totally different mindset - no expectations. If I go into it with no expectations, perhaps I can afford to have a little hope. I will take setbacks in my stride, I am not losing anything by trying. All I know is that what I have been doing is no longer working; I knew that day would come. CRPS isn't normal pain. All medications have limitations, and the body gets used to it. Every so often, you need to shake it all up; change doses; change the way you handle things. 

I'm going to shake this house of pain up so much, it won't know what hit it! I am much stronger than the pain, I have too much going on for me that I simply don't have time for it. My new years resolution will be for my strength to stay powerful, my drive to succeed, and laughter to conquer the pain. I wish I could be normal, just like everyone else... But this new year will be the year that I beat it once again, and remain on top!

Happy New Year!


  1. Jane, I want to thank you for this blog. I am a member of CPA, that is where I got the link to your from one wonderful site comes another wonderful site. I have read your entries and there you describe pain like I can only articulate in my head. When asked why I walk with a cane, or why I am unable to do something beyond my capabilities...I can never put it into short and concise words that will spare me the pitied looks or the disbelieving ones. After 6.5 years, you would think I would have it all down pat by now.
    I admire the person you are, the spirit in which you embrace your life and the ability to name a spade a need to make things more palatable for others. You inspire me... :)

    1. Hi Von,

      Sorry it has taken me some time to get back to you. I've been having a rough time lately which I will go into shortly... thank you so much for such a lovely comment - I really appreciate it!! 6.5 years, you have gone past the most difficult years, now it is a matter of finding who you are now with it. It is a journey of ups and downs, but you only see light after you know the darkness :) We can all be strong together, being alone in it all is the worst! Take good care xJ