Saturday, 29 August 2015

Updates and excuses PART IV: The Lame Game...

This series is nearly completed, we have made it to the last stages of these Games. It has taken me so long now that I am really impatient to move onto the next part of the story. Certainly, there has been a lot going on; a lot to document and get through - but when isn't life full of surprises and things to do? Procrastination, excuses... these are just some of my talents for sure - and the excuses are but one part of these Games! Writing has always been a huge part of me but yet, it is also a driving force that seems to be generated from somewhere else - as though channelled directly from my muse... And it's something that I cannot force. Especially about Pain. Pain draws away so much of my energy, my power, my very being. Sometimes it takes all that I have and all that I am, to fight Pain. But despite all this, I am still winning! I have been undefeated for so long now that I plan to stay that way. I finally have the winning edge against my foe! I am still winning these Games!

Rather exhausting it was, going through the Name Game. Seeing doctor and specialist, one after another; having potential diagnoses thrown around, tests and scans ruling them out; before starting the process all over again. It's like a very boring episode of House M.D., though with no screaming, no vomiting blood - and no mention of lupus or sarcoidosis (My watching House drinking game!)!


Ah, the Lame Game. Lame with my gimpy legs! Lame from boredom, and lame from inability to change it. But I am getting ahead of myself. Where we left off, I was off to the neurologist! It had been a while since I had seen one, only in the very early days of my arm. I knew I had at least a nerve conduction study ahead for me, something I wasn't looking forward to, but knew it had to be done. A nerve conduction study involves electrodes being placed on the skin and being zapped; jumping limbs and unpleasant sensation of electrical currents shooting down my legs. Apparently it is supposed to feel like having elastic bands being flicked on your skin, or static electricity zaps. Naturally, that is for people without freaky nerves - for me, there is significantly more 'discomfort' (read: pain!). However, I have long abandoned my fears of needles and procedures. I might not like them, but I am willing to endure some uncomfortable stuff and pain with the knowledge that any 'discomfort' I feel is only temporary. Unlike the Pain, which is always present, never ceasing, never ending. Temporary means that that particular pain (with a small 'p') will end at some stage. And then I can go home, lick my wounds and have a cuppa. You know you're getting old when you get excited over a cup of tea!

The neurologist I saw was lovely, whose calm and kind bedside manner really put me at ease. Admittedly, I had a bit of a backstage pass as he works with my mother. But I don't think that was the only reason he was so nice. It is not as common as it should be, to have a good specialist who has this particular ease with patients. A specialist who sees the patient in front of them as a whole person, rather than a checklist of symptoms. A real rarity! He sent me for not only the dreaded nerve conduction study, but another MRI, only this time looking at my spine and brain. While most people have a twinge of apprehension in the thought of scary stuff lurking in their heads; I also had a bit of excitement - I would finally have irrefutable photographic proof forever more that I do in fact, have a brain, for the next time I did something stupid! But I would also be reassured that every headache or brain freeze was "not a too-mah!"

MRIs and I are not good friends, but a bit of valium allowed a truce and some good music made the time pass easily. It was a longer scan than the one of my knee, and involved being right in the noisy contraption. I got the option of a periscope with mirrors to see outside, or to go in blind with a sleeping mask. I took the mask! I didn't want any reminders of the first time, being trapped in a coffin and unable to breathe! Though I still felt I was being jack-hammered from the inside out, and the noise sets off my pain; I was better equipped, prepared and able to manage it. The technicians were fun too, joking around about being the deluxe suite and naturally better than shitty North Sydney! And they liked my music, which was 'Canto Ostinato' by Simeon Ten Holt - my favourite dutch composer and go-to relaxation/meditation music. It really showed me that just because I had one bad experience many years ago, doesn't mean that they are all the same. Life lessons are found everywhere!

I braved the nerve conduction study, which was thankfully quickly over. It turned out fine; unsurprising because CRPS affects the small-fibre nerves which the NCS cannot detect. I was settling down, knowing that my hunch seemed to be proving correct. Crappy CRaPS had indeed spread. However, getting a callback from the radiology department was unnerving. Not the type of callback you want to get. They wanted to look a bit deeper, in the internal auditory canal. I tried to stay calm, but my mind rushed through all the things it could be. Why did they want to look there? Oh shit... my balance problems... my tinnitus... 

Meanwhile, the neurologist reassured me that abnormalities in the brain are somewhat normal, and to trust his word that he would tell me if it were time to panic. He said most people have abnormalities, that just finding something did not mean that it was a concern. He did not think it was MS; though there were indeed similarities, the symptoms didn't match up. However, if it were there, it should show up on on brain and spine scans. 

After the callback, I was feeling somewhat unsettled about them peering deep in my brain. It wasn't just that Kindergarten Cop-tumor moment we all have; but for me it is the thought that something could be interfering with my favourite body part. It's the one and only part of my body that works well, rather it's the only body part that hasn't failed me... Or come to think of it, it is the body part that has actually failed me the most.

Like all our deep relationships, it's the ones we love the most that have the greatest potential to hurt us. I have always placed great value on my ability to think, to create, to understand. My intelligence. More than my mobility, or even use of my hands. The powerhouse, the control center. I am my memories, my essence is within my experiences. The thought of losing that is heartbreaking. Despite 14 years of Pain, I still always had my brains; my ability to problem solve, to explore and experience. Those memories were what got me through the worst of the Pain. But yet, this very part is also the one that is hurting me the most. It is the source of my Pain; where it originates. It is the maintainer of my Pain. Though I feel it in my arms and legs, it is not those nerves that are creating the Pain. The Pain is in the brain, driving me insane... My brain is also where my dark days of depression came from; my madness and insanity. It is my destroyer, my redeemer, my saviour. Losing arms and legs, it's a shame but I can adapt. My brain though...


There were some unusual findings, though nothing earth-shattering. I have spina bifida occulta, which is a few of my thoracic vertebrae that did not completely close up before birth. It is the minor form of spina bifida, many people have it and don't know as it is only detected by x-ray and scans. Besides the vertebrae being weaker than the rest, it wasn't causing any problems, thankfully. I also have a few damaged discs in my lower back, which I had no idea I had (or just that the niggling pain I feel there is completely overrun by the neuropathic Pain elsewhere), and mild scoliosis. While interesting to see, the images and videos of my brain were definitely the coolest inside-pictures I own! The ultimate selfie - brains and eyeballs! 

The neurologist referred me onto a pain specialist, one whose name I had heard mentioned in past reports, but was never able to see until now. It may have been that the insurer did not approve the consult. The paradox of workers compensation often meant that treatments that could have had the best outcomes, were often denied on basis of cost  - leading to an even greater cost in the long run. Workers compensation claims were all about the short-term, and that lack of freedom in my own treatment was part of what drove me to get as far away from it as possible. Regardless, after all these years I was finally going to see him. 

While he was nowhere near as nice as the neurologist, or orthopedic surgeon; I didn't find him as bad, or as rude, as other specialists I have seen over the years. After a bit of a wait, I was called in late and he didn't waste time getting straight to the point:

"I've been reading your file here and it would seem you are in fact, having a spread of your CRPS from the inciting injury 12 years ago, brought on by shin splints..." 

And there you have it, in that one sentence, I had my answer. And it was the answer I had suspected all along. The Name Game was finally complete, only I wasn't sure if I had won. The prize being the inescapable progression of my already incurable and lifelong progressive and painful disease. The prize of more Pain, more limbs, more disability, for the rest of my life. Was I relieved to have my answer? A little. A lot. Certainty is better than uncertainty; confirmation even more so. While I take great effort in telling my loved ones that I am always right, this was the time that I... well, a tiny part of me hoped I was wrong. That it would be something else, something treatable, curable. Something that had more hope. Something that could have some change, improvement. Something that could lead to better things. Where I could be normal, boring even.

"However, you would be an ideal candidate for a spinal cord stimulator. It is too late for your arm, which is already chronic end-stage CRPS. Once it has progressed that far, there is little point. But for the legs, you are within the good time frame, though I wouldn't wait too long..."

Wow! An option? A possible means of getting out of this? Something beyond the 'live with it' mantra I have been hearing for over a decade? I could almost hear the choir singing... Hallelujah! I can fly again! I will be able to fly higher than ever before...

But hold your horses! The stark cold reality came crashing down around me almost immediately after I was lifted up by the endless possibilities of what this could mean for me. Falling into a deep, dark, cold hole in the ground after my wax wings melted in the hopeful hot sun. This is a very expensive undertaking. Outright, without medical insurance, the cost estimate quoted to me was... Wait for it... $45-50,000. Yes, that is correct. More than plastic surgery; more than a rather nice car. As much as one of those elaborate weddings I would never have myself. The second option was to participate in a clinical study, where I would get the SCS implant for free (in return for being a medical guinea pig!), only covering the hospital costs, which without insurance would be somewhere in the ballpark of $10,000... 

It was a rather sad and lonely train ride back home that day. I was in a bit of a daze, having felt all the hope in the world, only to have it snatched away in a second. A "nyah nyah, you can't have it" opportunity that was being waved just above me, well out of reach. To have that one hope dashed in just a moment after it was given. It was like I had almost gotten through the doors of the exclusive club of "normal life" before being denied entry: "sorry madam, you can't go in there". It was almost worse than just being told it was the just the CRPS spread. That I could live with, adapt and move on. Low expectations means you can generally exceed them. But hope is a higher expectation - to have it then lose is, it can destroy you if you are not careful. 

Back to problem-solve mode: What were my options? Could I borrow money to get the SCS? Unlikely to impossible. A few thousand perhaps... but a deposit on a house? Not a chance! With that out, what were my other options? Rehabilitation, sure. When I got back. It was time for me to return to the Netherlands. I had come seeking answers, and now I had one. Hard evidence is always more valuable than guesses, and a fistful of reports would make it easier in seeking treatment back in the country where I did have medical insurance! It seemed my journey had come to a close. For now, at least.


So, it was time for the closing ceremony of these Games, the Shame, Blame and Lame. Onto the new chapters of life. I love my sunburnt country! I would miss the sunshine and warmth. The endless blue skies and the expanse of the Milky Way in the star-filled nights. To not hear the whisper of wind blowing in the trees and the constant chatter of birds. Surrounded by bush, water, ocean beaches and with nature at the doorstep. My nearest and dearest - my ever supportive and loving family. I had also made a few new friends this visit, mainly from the meditation group I had joined. I was unable to see many people in general, with all the medical stuff. Plus, I had not really told many people the extent of my disability, and without my mobility I had a fairly limited travel range. It is always a sad parting with my homeland, but the Netherlands was also my home too. I like having two homes, at opposite ends of the earth. Best of both worlds... I will always return to my beautiful land, but fate has chosen my second country. Opportunities await, the looms are busy weaving the next page of my story...   

Tuesday, 23 December 2014

Updates and excuses PART III: The Name Game...

The name of Pain may be CRPS, but it doesn't automatically mean that any and all other unexplained pain would always be CRPS too. Logically, we could reason it as follows:

a) CRPS can spread beyond the original site in some people; (true)
b) I have CRPS in my arm and new Pain in my legs - my Pain has spread beyond the original site;
 THEREFORE - These new Pain symptoms in my legs must be CRPS (logically true but it is based on the assumption that there are no other causes to Pain)

It is an easy assumption to make, but to rely on this assumption would be dangerous without evidence. What if there was a life-threatening problem that ends up ignored because it mimics symptoms of a condition you have already? You can see the danger. It's such an easy one that even I made it. Granted, it felt very similar. This new Pain was largely untouched by pain medication. I slept without covers on my legs because it was too painful, and showers were becoming more uncomfortable - and dangerous until I got a shower stool. I started wearing lots of skirts and stockings instead of my usual jeans, and was thankful that it was coming into summertime. I wished I could go barefoot in public without fear of stepping in glass, dog shit or being impaled through the foot with a stiletto! Being touched was enough to send me through the roof, and my usually sparsely-haired legs took on a more hirsute hippie vibe. This was rather annoying, especially with the very pale skin tone (I never had much colour variation, not being fully caucasian I don't even turn a proper red when sunburnt), it stood out even more. I couldn't do a sugar wax or even run a razor over my hypersensitive skin. Yes, Pain and disability, and yet we still have time to be vain! Actually, it's not all about vanity. I discovered with my arms years ago the exact reason we as a species used to be more hairy - because each one of those hairs can pick up and read sensation from our environment. Each hair follicle could pick up minute changes in the same way as cats' whiskers, or the way insects detect movement close by. For me, each one of those hairs were made of tiny fire ants, biting the living blazes out of my legs while they were crushing them to a pulp from every dimensions!

It sure felt like CRPS!

Sunday, 12 October 2014

CRPS – The Dutch Way: “Evidence-Based Guidelines CRPS type I” and possibly halting the early stages of CRPS in its tracks

The interesting part of living in a foreign country is seeing that there are different approaches to treating CRPS. Not that one country necessarily has the edge over another, simply that there are subtle differences in viewpoints that can bring forth an entirely different perspective. I am an Australian, living in the Netherlands, and have been here for years now. While some aspects of the Dutch medical system may seem somewhat lax at times and I've had many gripes with these sometimes infuriating differences; what I really found interesting was the research that they have done in the field of CRPS. Their approach differs somewhat to what I had been through, or found about about over the years. It has been getting great results in treatment of acute-stage CRPS, sometimes halting progression and even reversing the changes and the Pain!

Tuesday, 7 October 2014

"Mysterious CRPS condition hits home for INSIDE EDITION Reporter" (video link):

I saw this video on the facebook page of Chronic Pain Australia. It's a short piece showing the experience of two young people living with CRPS. What life is really like when you have this very rude fiend gatecrashing your party.

For me, it was uncomfortable to watch. I couldn't quite grasp why I felt this way; after all, it's what I live with too. It hit me suddenly - I don't view it from the outside. This is what my loved ones see. While you're the one experiencing it from the cheap seats, it becomes somewhat normal to you. For the ones who love and support you, I don't think it can ever become 'normal'. It must be horrifying for them to watch and would have a huge impact on them. It certainly had an impact on me too.

Friday, 3 October 2014

Updates and excuses PART II: THE BLAME GAME

Blame, faith and the peculiar perils of positive thinking...

In general, I try not to blame others or the world for things that go wrong. There seems little point; it doesn't achieve much, other than making you feel even more hard done by. I may have already mentioned before that my mother tells me all the time: Shit happens! That for years she has told me to tattoo it on my forehead so I don't forget! Shit does indeed happen; blame is pointless and doesn't always lead to action. And action is the quickest way out of the shit that is happening (or even away from the shit that's hitting the fans, or flowing in the creek you're stuck on without a paddle!)

In the aftermath of the CRPS spreading not only down to my right leg, but into both legs; I wondered for some time if I was to blame for this happening. Was it my fault for skating and cycling like a madwoman possessed? Was it my failure that Pain was beating me again? Could I have prevented this by taking more care? I should have known better than to go on the ice. I have CRPS; I knew that another injury/trauma can cause a spread. I was stupid to ice-skate in the first place! All this now: my arms, my legs – this is all my fault!

I think that when anyone has an illness or condition that is out of control, one of the first thoughts we have is: Did I bring this on myself? This implies that when shit happens, it must be because someone is actually doing the shitting. However, the shit in this increasingly unpleasant image, doesn't always necessarily follow from anyone doing this... metaphorically.

Saturday, 27 September 2014

Updates and excuses PART I: THE SHAME GAME

And yes... the shame of making this post some 2 1/2 years after the last, my biggest shame of all!!!

It's strange how fast time passes, especially after you hit 25! Pain and I have been together for 13 years now, though it feels like yesterday I was celebrating 10 years. A theme of this piece is relationships that come and go. Strangely, of all my relationships and friendships over the years, I have probably had a relationship with Pain longer than I have known many of the people I know now - Pain and I seem married for life now. Brings a whole new meaning to being shackled to the ball and chain...

 These past few years have been some of the biggest challenges I've faced so far. Perhaps not as difficult as the early years of CRPS, when I didn't really know anything, nor had any experience to draw upon. What I had hoped simply never would happen, has now happened and has become the biggest challenge to my own sense of self. Losing the battle with CRPS. It has spread to my legs now. And I have felt like a huge failure at times, for letting it take over so much of my body!

As someone who values independence in the same way as I value necessities such as water and food; I've needed to adjust what I define as “independence” in order to continue being, well... me. In the early years of having it in my arms, no matter how horrible it was, I still could run away. Maybe not from the pain, but in the physical sense of moving my legs in order to get me somewhere away from wherever I was standing. Now I have CRPS in all four limbs; though it presents more severely in the right side, I seem to have run out of spares!

Tuesday, 27 March 2012

The Pain in the brain really drives you insane... Living your life in a game of chess...

It's certainly an interesting time in the treatment of pain. Body in Mind has a link to an article in The Australian (a national broadsheet newspaper) titled: “The champion cyclist, her mysterious excruciating pain and her unconventional road to recovery” written by Christine Jackman (The Australian, 24 March 2012. Click on the link for full article)  I also found a piece in the dutch language magazine Elsevier (No 11, 17 march 2012, pg62:) “Why pain isn't needed” (Waarom pijn niet nodig is); talking about the increase of multidisciplinary pain-clinics in treating pain as a condition and management techniques to lessen the impact it has on peoples' lives.

Friday, 16 March 2012

Snapshots of the sublime in fire and ice...

It is the simple things that bring the most pleasure. Sometimes you wake up one day feeling much lighter than you did yesterday. As you drink your morning cup of coffee or tea; that moment before you take your first sip, when you inhale deeply that lovely scent and you feel instantly relaxed. Or the smell of salt and sea, to the sound of seagulls and waves.

After a period of gloom, a tiny ray of sunshine pokes through the curtains and blinds you in its brightness. It's those unplanned moments of fun that take you by surprise; allowing you to remember who you were before the pain - who you still are underneath it all.

Even better, is when you can't keep the grin off your face and your cheeks hurt from all the laughing. When you listen and all you can hear is the music; Pain only an irritating buzz next to its power, and not the siren or lightning it was before. This is it! Fun times work like magic; laughter makes light of the days of darkness.

Believing in magic, in the special things that happen in life can show you just how much there is to live for. You can see this in anything really, in the small gestures; someone who smiles when they speak to you; seeing a lovely sky or sunset; or hearing from an old friend. Or even something bigger...

Thursday, 15 March 2012

Finding the energy and being kind to yourself in an indifferent world...

I'm sorry I have been absent. It happens sometimes when you have barely enough energy to get yourself dressed some days, or even eat. It's when the times are bleak that you feel the weight of the pain so much more. Sometimes it gets weary, I don't like to dwell in the crappy things but there are times where it is kind to allow yourself a bit of "sulk time". It is ok to take time to take care of yourself, to nurture yourself by admitting that times are tough.

It's also hard when you know others are going through difficult times. It is hard to have friends, or people you know; who are facing an entirely different fight - one for their lives. It never helps to compare your suffering to another persons'; as it only makes for pity and bad feelings helping no one. Suffering is suffering, no matter the cause. However it does help to see that the world is much bigger out there, and more important things in life! Enjoying what you can do when you can, sometimes you forget your troubles when you're having too much fun!

Sunday, 5 February 2012

Don't dis my abilities and how it feels to be discriminated against...

On 3rd November every year is the International Day of People with a Disability (IDPWD). New South Wales celebrates it with the campaign  "Don't DIS my ABILITY" celebrating diversity and the abilities of people who live with disabilities. I really like this campaign, I find it wonderful to have such a great celebration of all the things people CAN do, when the emphasis is continually on what people cannot do.

I have been quiet on this blog. Life has been throwing a lot at me, things that I wish like hell I didn't have to deal with. I have been feeling humilated, depressed and frustrated. Not because of my pain, nor from the challenges that normal living brings. The challenges are not from my disability, but from the way that I am "disabled" by others. The humiliation of begging to be able to have the same opportunities as people who are "able". The frustration of living with a condition that people have no understanding of; of having an upper-limb disability that is even less catered for than lower-limb impairments.  I am being discriminated against. And that, that is what is making me feel depressed about my life. It is an awful, terrible feeling. It makes me feel ashamed of who I am.

Friday, 13 January 2012

Body in Mind - Luke Parkitny

It is well established that pain is in the brain. But what happens in the early stages of CRPS to turn a minor injury to something so devastating? 

Luke Parkitny talks CRPS at Body in Mind

He is looking into whether there are inflammatory factors involved in the early stages of the disease.


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!

Saturday, 17 December 2011

Dancing away despair and putting pain in its place...

With the past few months of flare-ups in my pain and the intense allodynia (pain from harmless things touching my skin, such as clothing or bedsheets), I haven't been my usual cheery self. However, I wouldn't say I'm depressed, nor even all that negative at the moment. It's interesting to note that I'm going through what I went through 3 years ago, but back then I was deeply depressed and suicidal. I felt I couldn't do it anymore - I couldn't live with this pain.  

Of course, over the past few weeks, there have been some tears, some cranky moments and some times I wanted to give up completely. I've had times where I've become so overwhelmed again by the weight of my pain-companion, that I'd bawled like a baby. I do feel hopeless on occasions, though these days I know that is only temporary. Sometimes I lose my control purely from the frustration I feel. 

I get in these moods where I stubbornly and rudely refuse any help, then end up bursting into tears from my own pig-headedness. I get into a mindset where I MUST do whatever it is, no matter how ridiculous or unnecessary. For those close to me, they would have seen this behaviour many times. Where they watch my pathetic attempts to do the simplest of tasks; "no I can do it ON MY OWN thanks!" while struggling to open something, or carry a bag. I can be downright rude, which isn't something I'm proud of.

It is usually something that they could very easily and very willingly do to help me. When they do help me out, I sometimes show some real ingratitude, which isn't good. Of all the times they cannot help me nor take away my pain; opening a bottle or chopping food is certainly do-able. I forget that my pain is something they live with too. I'm not the easiest person to live with! And if I graciously accepted their offered help, I would save my energy for the other tasks; the more fun and interesting things I do. Surely that makes more sense than working myself into a state!

Thursday, 15 December 2011

Lorimer Moseley on TEDxAdelade

Pain is in the brain!!! This bloke is great - one of the leading minds in the understanding of pain!

My story for National Pain Week in Australia and celebrating milestones...

Some months ago, I wrote my story for National Pain Week in Australia. It was something that really opened my mind up to writing this blog. When I looked back over all that had happened over the past years, I saw just how far I had come. And I realised that life will never again, be as difficult as those first years were.

It was a big thing for me, reaching this point. Back when I first started experiencing these strange symptoms and pain; I couldn't even contemplate next week, let alone a decade. I never thought I could do this, live happily and with so many good things in my life. And there it was, in black and white, all the things I had done over those years. Some very dark moments, some times of utter hopelessness and despair. But there were also some really bright and colourful times, some massive achievements and incredible experiences!

What a happy coincidence - having my 10 year anniversary during the first National Pain Week!! I often celebrate my anniversaries, buying myself a present, or doing something special. Some people thought I was mad, or being negative or depressing; to remember the day that changed my life so drastically. I don't care what they think - each year I survive another 365 days in pain is another year that some people don't have. Too many people take their own lives every day, to escape the harsh realities of living with uncontrolled severe pain.

Besides, I celebrate each milestone because I have done so much with the pain! Being in pain all the time taught me about life, about living each day to the fullest. It has made me who I am now, today. I know that there is no limit to what we can achieve if we set our mind to it. When you hit rock bottom, the only way is up! Some days, it's a major achievement to get out of bed or to get yourself dressed; other days it's learning a new and different way to manage your condition. Each of those achievements, no matter how small, should be celebrated!

Life with pain doesn't have to be a life of suffering! The world is full of colours to paint over the blackness of despair!

Some links: 

My story:
Making Peace with Pain - Chronic Pain Week

Chronic Pain Australia - check it out, it's an excellent resource!
Chronic Pain Australia

Why blog, why? Maps, Aliens and brains...

I love this age!! I'm very new to blogging, but I always loved reading other people's. I love that it is possible, in today's world. It's a magical medium; where people can write about whatever interests them, getting it out there in the world, sharing the knowledge. I never saw myself as a journalist, nor did I think I had something interesting to blog about. Sure I've always written my journals: travel journals; thoughts and feelings. But I always saw myself writing a book, rather than a blog. 

However of late, I've noticed just what a bore I've become. My long suffering family and friends, always listening to me whinging about my arms, about the pain. There was nothing they could do to change it, and a decade of it meant that they often hear me complaining about the same things. I've become one of those annoying repetitive people always whining about the same stuff. It would become rather boring for them, for me too. For my other friends, I try not to talk about it too much. Partly because I've never been entirely comfortable with what I have. I hate admitting to weakness. They ask me what is wrong with my arms, each explanation comes up short. It's complicated, many different processes at work. When I do go more in depth and detail with the pain and limitations, they end up either not understanding, or shocked... 

So, this seemed the perfect medium. A place to talk about it; what I go through every day. A place to share all the crap, all the funny things and to unwind. To be the "Jane in Pain" and not the Jane of my normal life; where I try very hard to keep it invisible.

Wednesday, 14 December 2011

A problem shared is a problem halved...

A new adventure, a new way of managing things. In the past, I have kept this all inside. I lived this private hell while on the outside trying to appear absolutely normal; often quite successfully. Very few people knew what I was going through over the years. But the problem with holding such a secret is that it eats away at you inside. Suppressing things only serve to make them more powerful. The beast grows more heads to stare you down. Secrets destroy, and when it comes down to it, I'm not fooling anyone close to me. All I was doing was living a life of dishonesty. I was lying to myself as well.

You see, I live with pain. I don't suffer from it, because suffering is being a victim to it - and I am no victim! I live with the pain and have long exhausted all medical treatments. No one likes to think of all the illnesses or conditions that medicine cannot treat. We like to imagine that the doctors can fix everything, always pulling something out of their Mary Poppin's bag. Take a pill, a spoonful of sugar... have an operation and everything is cured, fine and dandy. Unfortunately, it isn't anything like that. Doctors cannot treat everything; and while we have excellent medical care in these modern times, there is still much that they don't really understand.

Pain is a fundamental human experience; it's our built-in warning system. An alarm that goes off to tell us to not put our hand in the fire, or not to hit our shins or stub a toe, so we learn for next time. It's a lesson that even animals learn; built into the hardwiring of our nervous systems and in our genes. It happens as we are healing, as our cells are renewing and patching up whatever injury we had. That pain goes away, it is only temporary and is a good and even useful thing. A life without that pain is a life of being unaware of dangers, which is actually a lot worse.

But what happens when it doesn't go away? When the "red alert" is still on long after the danger has past? What happens when you experience pain for weeks, months, years or even decades? This is where medical knowledge comes up short. There are some types of pain that remain, sometimes for a lifetime. This sort of pain is much more difficult to understand and almost impossible to treat. How the body amplifies the pain signals into something that resembles a neverending scream from a child that never draws breath and never gets tired.

It is most people's worst nightmare, being in pain all the time without relief. It's up there with being buried alive, or eaten alive. We talk about putting animals to sleep so they don't suffer in pain. We pray for the end of suffering when someone is critically ill. But what about pain that isn't from cancer, or other terminal illnesses? We don't put people down.

I had a workplace accident over 10 years ago when I was 20 years old and felt invincible. I sustained a nerve injury in my arm which caused me to experience neuropathic pain. Neuropathic pain is a much different sensation to that of normal nociceptive pain ("ow, that water is hot!"). Ever hit your funnybone very hard on something? So hard that it makes you feel physically ill from the intense nerve pain and it remains for a day or so? That is the nerve; that is the pain. All the damn time! Welcome to my experience!

The body has all sorts of mechanisms to deal with injury. The brain, the main server of our neurological network, goes into repair protocols. Most of the time, it take a little while and all systems are restored. But sometimes, something goes wrong. The brain doesn't understand this huge influx of signals, so it sends commands down the nerves to amplify the signal (so it can make sense of it). The nerves themselves, work harder to communicate it back to the brain, so they send more and more signals; all in the hope that the brain will understand. The system goes haywire and crashes - and these changes can become permanent.

And that is what happened to me. It's called by various names that all in themselves, mean nothing and do nothing to change the outcome. Complex regional pain syndrome, a new name for the old reflex sympathetic dystrophy... The pain is there 24 hours a day, 7 days a week, 365 days a year... more than 3652 days of my life, a third of my existence. No medicine can remove it, no slicing nor dicing my body will either.

However, had that nerve healed normally and I went onto have a pain-free life; I wouldn't be where I am today. I wouldn't be the person I am today either. What a long and winding path I've taken on this journey of pain. Some times I have been so desperate that I've wanted to cut my arm off (myself - with a blunt butter knife... I can dream ;) !). But to add insult to the injury, had I done so; I would still have this pain, only in that case I would also have no arm. I've had many dark and black times where I've wanted to be put myself down: dead = no pain. But dead is dead, there are no second chances; nor can we wind back time to do things differently. If I gave up on everything, there wouldn't be a chance to appreciate those things in life that are enjoyable.

To smell the sweetness of ripe mangoes, or the magical smells as you walk into a spice store. To feel the warmth of sunshine on my skin; or the tingle of a southerly coming through after a hot and humid Australian summer day. The cool sharpness of the air on a European cold snow day, kissing my cheeks while breathing wafts of clouds as I walk. To hear the magnificence of a full orchestra being played, or listening to my favourite pieces of music. The love of my family, of my friends. I am so lucky to have them all there for me, cheering me on. The joys of living are appreciated all the more when you know what hell feels like. Enjoying the simple pleasures of the moment, living in the now. Or at least I try to...

The world is full of wonder and is mine oyster. The total freedom of travel; memories of looking up at a trainboard and seeing all the possibilities. All the different countries or cities that I could be sleeping in tonight. Or laughing hysterically at the absurdities life throws at me. Like the time I was waiting for the nightbus to the airport at 4am and I flipped over a seat like a turtle on its shell; with no hope of getting myself back up with a backpack on my back... Someone did help me, keeping a much straighter face than I could have done! Life has a sense of humour! The magic is out there ;) happiness and fortune are everywhere you look, if your eyes are open to them!

As alone as my experience has been, I've always had a companion though those long nights of no sleep, or days where I've just wanted to scream and cry. Of course, that companion was the source of those sleepless nights.... I never asked for such a rude travel buddy - I much prefer to travel alone! It's been a rough and bumpy road over hundreds of thousands of kilometres; across the world and back again. No matter how fast, nor far, I run. He is still right there with me, gripping my arm with a grasp that brings tears to my eyes and makes me swear like a sailor! There are no magic answers, no cures, and no amount of tantrum-throwing will take it away. I'm in this bad marriage with him for the rest of my life.

As much as I hate whiny self-pity, I do succumb to it on occasions. But I try to get over it quicker than I used to. Forgive myself and forgive others. This blog isn't just about pain and all that depressing stuff. It's a place for me to be me; to share my problems, and to find solutions. A place to laugh at the ridiculous things that happen; or to have a whinge and unwind. I try to not be a pessimistic person, but one can't help it sometimes. The constant pain and limitations are infuriating; devastating and debilitating at times. Interfering with everything; no escape, no release, no relief.

Neither is there any relief for my nearest and dearest, who travel on this journey with me and live with the pain too. Somewhat unfairly because it's not in their bodies. I think it must be very difficult to watch - someone they care about in pain. Maybe just as difficult as it is to be the one in pain. It would be so hard to watch someone struggle or suffer; doing things that would take you a second. But, independence is so important to me, and it's a slippery slope if I ask for help everytime something is hard. Unfortunately, I can be rude at times; they don't deserve to be yelled at or told to bugger off. I can be rather cranky, not because I don't appreciate their concern, but because I must do these things myself. I can't let myself become powerless again; though in the process I make others feel just that.

But life is too short to waste on feeling sorry for yourself; or wishing for things that simply don't exist anymore! Me and Pain have travelled quite a bit together, nearly 12,000km on one such adventure!  We've danced together; we've skied and dog-sledded in the Arctic. We've carted a backpack on our back and trooped all over Europe. We paint together, we found hacks to knit and sew. We even bicycle now, with a "handlebar mod" and I have various other tricks for some of the more difficult tasks in life. I even have a nice collection of gloves and arm-covers; partly to keep my cold arm warm and protected; but it also helps me hide my arms so no one notices. I hate pity  or personal questions on the street! While I might not be able to shake hands, or applaud; Pain and I live quite a fun life together now that we have found peace in this unwanted partnership.

The less attention you give Pain - the less power it has over you!! My frenemy Pain, you have made me dare where others dare not, and that is why I am at peace with you. You are now as much a part of me as my eyes and ears. I applaud you with one hand, you frustrate me to tears but the show goes on...