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!

However, it wasn't just pain. The cold and hot skin patches, often side by side. I could have drawn perimeters around these areas and I would have had a barometric weather map on my legs. My feet were often sweaty and icy cold at the same time (who cold sweats like that?) and once cold, it was very hard to get any heat back in without help. I was also having problems keeping balance, but it was hard to know whether that came from the disability itself, or something else. You see, I couldn't "sense" my legs anymore. Putting one foot in front of the other was more and more difficult to coordinate and it was as though I had someone else's burning legs there. My cortical homunculus dude in my brain lost his legs too, poor bugger! I was getting dizzy at times, losing my balance and had a few falls - and a few rather spectacular public tumbles which really lowered the bar of my own dignity and self-respect.

But one doesn't need to do a google search to tell you that these symptoms could be a number of things. Most, if not all of the diagnostic stuff was done in Australia on my last visit in 2013, nearly a year later.

I went through two specialists at two different hospitals here and no one sent me for a single scan! While I think they should have, there really isn't a test or scan that will confirm CRPS. Diagnosis comes from observation of symptoms (on a sort of checklist of symptoms); pain that is out of proportion to the inciting event and exclusion of all other causes to the pain. While there are some scans that may provide further information about the inciting trauma, or may exhibit some of the telltale signs of CRPS; they are rarely conclusive and many CRPS patients have a whole stack of scans where the report reads "no abnormalities". This is part of the difficulty of diagnosing CRPS; without a specific test, it can be somewhat subjective even with a list of objective findings. There is also the battle of recognition: not every doctor knows a great deal about CRPS, it's not a common diagnosis. Despite all that, I really would have preferred for them to have done some of these diagnostic scans here in the Netherlands, but they weren't. I think it's always important to rule out any other causes, even if it means a whole lot of useless "no abnormal findings" scans. Just another one of the subtle differences in the medical system here that can frustrate me!

The main reason that they didn't seem as proactive in this way was that it wasn't really that obvious that I had injured myself in the first place. It took me some time to think back to what could have caused the trauma, as none of the falls on the ice were all that serious. It's not like I fell while skating and needed to go straight to accident and emergency, nor did I call my man to come and pick me up. The fall that I believe was the cause, happened while I was practising the spins. It was a fall that made me pause for a moment, as it felt a bit more than the other simple tumbles. But having a stop-check couple of minutes break, then being alright enough to keep on skating meant that it could not have been all that bad. Or so I thought at the time. I don't even know that with hindsight, I would have acted any differently. I returned to skating after all, perhaps with a little more care than I had previously. I still skated more than a kilometre and continued practising for an hour or two. I walked to the tram with no issues, got myself home without complaint. Aside from some general muscle soreness the next day that you get when you have had a good workout, everything was good. I had no problems climbing the stairs, or riding my bike for the few weeks after the fall.  

Then of course, was that night where it all went to shit. Those early few weeks were so overwhelming, that I didn't really have the brainpower to even figure it all out. By the sheer real estate that Pain had acquired, my brain was taken over by its monumental force. I literally felt my brain was burning away, I could barely think. I had wanted to write in this blog, but it was all too much. To be honest, I hardly had words to describe what was happening, let alone be able to compose my usual long spiels (as you may have guessed - brevity is not one of my talents)! I also pulled away from facebook and social contacts. With everything I was going through, the Pain, the Shame and the Blame about what had happened and not being able to walk; it was too much to go about normally. I may be able to write here about my darker thoughts and experiences, but I certainly cannot share this on any form of social media! Any time I logged in, it only served to remind me of all that I had lost. It also pained me to see other people going about normally; working, having fun and all those normal things people do with legs that move without a thought, without Pain hijacking every move. I'm ashamed to say that I was jealous of all the people whose lives were 'normal'; whom didn't have Pain with them all the time, and could move freely and independently. I feel embarrassed to even admit that, and I feel ashamed to have even had the thought enter my mind. I don't really get jealous per se, so it is even more uncomfortable for me than it otherwise might be. And to be jealous of people because they weren't disabled, those of whom could complain about little things in life; well, I felt like a really low and shitty person. It's not their fault that they could walk and I couldn't; I would never wish CRPS on my worst enemy. But those feelings were there nonetheless. With all the self-loathing; the shame for being disabled and the guilt I felt for my envy, I eschewed facebook. Really, I had enough to deal with anyway, without the pressure of social conformity and exhibitionism.

I decided I wasn't going to accept this. Even after deciding to get the walking crutch, I spent many a night walking in circles in my loungeroom. I was determined to make these legs move just as I told them too, and practised as much as I could. I did some physio, which didn't really progress very far and in some ways, seemed to flare up my symptoms more. I tried to keep mobile, because I knew that immobility was my enemy. I got a balance board which I would stand on to try to activate my transverse abdominal muscles in the hope that it would keep me upright. I massaged my legs daily to try and desensitise them, no matter how painful it was. I figured that I had already gone through all this once, it was going to be no problem this time with all the tools in my arsenal. Despite all this effort, it wasn't doing anything to improve my situation and in fact my mobility was slowly getting worse. I even made a last-ditch effort and discussed with my doctor lowering my medication slowly and perhaps trying a new one. While it seems crazy to lower medication when you have an increase of pain, there is evidence that there can be a paradoxical effect that by taking pain medication, you can in fact increase the pain. This was explained to me by one of my specialists some time back, so I wanted to know if it was actually contributing to my Pain.

A Practice Guide for Continuous Opioid Therapy for Refractory Daily Headache: Patient Selection, Physician Requirements, and Treatment Monitoring; (on www.medscape.com)

Naturally, don't play around with medication unless you have your doctor's guidance with how to go about it. Many medications cannot be stopped abruptly, and can actually be dangerous to do so. My doctor and I made a plan to do it gradually and slowly. If a medication isn't doing its job well, I don't wish to remain on it, or raise the dose expecting it to work. The medication I currently take make a difference - albeit a small difference - which is why I take it in the first place, it just wasn't doing as much as it should be. He also switched me from gabapentin, which I had been taking for years, and the high dose I was on wasn't having much effect; to pregabalin (lyrica), which is supposed to be a newer *better* option for neuropathic pain. For years, it had been my fall-back option, one I knew was there for when the gabapentin stopped having an effect. It certainly meant less actual pills to take a day, so that was an improvement at least! However the changeover period was probably one of the most difficult times I've had to go through. I had to gradually lower the gabapentin before switching, so it was a period of a few weeks where I was in incredible amounts of pain. I fell into a bit of a slump, and became more isolated. My memories are a bit foggy around that time, but it was a lot of sleepless nights, house bound and unbearable pain. I think what kept me sane was just focussing on the goal - getting through it, changing to a new medication that hopefully, will be more effective. Day by day, hour by hour, minute by minute. My doctor was supportive, as were those in my very small circle of friends and loved ones.

What has been incredible throughout this whole experience, is that if I ever had a reason to fall into a heap - this certainly would have been it! It really was so far removed from what I was feeling back in 2009 when I had my last big depression blow-out. This time I was merely down, rather than depressed; frustrated rather than furious. I felt none of the feeling of being punished, or tortured; no deep dark pit of despair. I had days where I was more emotional, but everyone gets those days! Even during the worst weeks, I still remained... myself. This was only a setback, I was going to get through this. I was battle weary from the decade of fighting the Pain, but I also knew my enemy so intimately that I knew its weaknesses. Though I had made friends with my Pain; it was a 'frienemy' type of relationship. I made sure that this time I was the manipulator, rather than it controlling me. I had learned enough over these years to know that I was really the stronger one. It wasn't winning any more and it never would again. Even when the Pain was so bad I couldn't think, or sleep; it wasn't defeating me. Even though it was taking my mobility and freedom; it wasn't defeating me. I realised that I could ride the flare-up waves; rather than getting smashed by them. I harnessed their power and surfed them. Every single moment of joy, I clung to like a life-raft. If something was funny, I belly-laughed like an idiot! I meditated a lot, seeking solace in a deep breath and letting go. I played my soundtrack of Pain; with music I could find a place to observe it from, and not get pulverised by it.


So, almost a full year after the Pain took my legs, I travelled back to Australia to see if there were any options back home. There I saw my dear GP who has been my trusty doctor since I was a child and throughout the years of my arm. I finally was sent for my big photo shoots and meet-and-greets with specialists. I had my first x-rays done of my knees. And, big surprise - no abnormal findings!

The bone scan, on the other hand, did show something strange was going on in the bone. A three-phase bone scan (or bone scintigraphy) is done by having a small amount radioactive stuff injected into a vein, and they scan you initially for half and hour or so; then after a few hours break, they scan you again. It looks at how the blood pools, and how bone metabolises; how it absorbs the radioactive material and how quickly . If it is abnormal, more of the tracer is visible - increased uptake.

I had this bone scan before on my arm back in 2001. It was a traumatic experience, with veins collapsing on both feet. After those two difficult attempts, it ended up being injected into the back of my good hand. This time the woman who did it gave a very good needle which I hardly felt at all, so I thanked her for her skill! A vastly different experience to my first time, or maybe I'm just tougher now! With both bone scans on my arm (13 years ago) and legs (in 2013), there were areas of increased uptake, so the bone was remodelling faster than it should, so there was definitely some trauma going on. The report went on to say it was a response to increased stress or multiple minor trauma related to overuse. This was rather odd, considering I could barely walk and needed a walking crutch just to get around, so marathon running certainly wasn't what was causing this! What really was interesting in sitting these two reports side by side, was the similar finding of: enthesopathy. Entheses are what attach ligaments and tendons to bones, so enthesopathy is a disorder in these soft connective tissues, and may have an inflammatory cause. However, it's a bit of a vague term that doesn't provide a lot of information. The fact that this is the second bone scan of a separate body part with this finding; where both scanned areas are where I have the Pain, is noteworthy - but not a diagnosis in itself.

With these stunning photos of my strange but rather good-looking bones, I was referred onto the bone doc - an orthopaedic surgeon. He had a look, tried to be as gentle as he could to examine my legs, but wasn't really sure where to go from there. He wasn't really all that confident with stating outright that it was CRPS, as it wasn't his field of expertise and he didn't have much experience with it. He also remarked with a laugh that I was one of those notoriously difficult patients, like doctors and lawyers often are, who want to know all the nitty-gritty details and question everything! That I am for sure! With a bit of a chuckle, he sent me for an MRI on the knee that was slightly worse, or at least, the one that I felt was more structurally unsound, rather than just CRaPS crazy; saying that in knees, usually what the MRI finds in one will often be in the other. MRIs are not cheap, so scanning the two would not only have been expensive, but probably medically unnecessary. It was mainly looking to see if there was a tear in the meniscus, but whatever else was going on in there.

Oh dear... I was starting to remember all the traumatic experiences back in the beginning of this Pain adventure. The bone scan was traumatic the first time; the second ended up rather pleasant. The first MRI though, was simply awful. Lying in a painful position, being slid deep into a coffin-like contraption and the grating loud noises vibrating deep into my bones and almost shattering them from the inside out. The noise set off a huge pain spike, and lying in an awkward position really wasn't helping me. The technicians weren't really very helpful nor sympathetic, I wasn't given a panic button or anything. It was also a much longer scan back then, and I ended up quite distressed and they weren't able to finish it. I didn't really think I was claustrophobic, but I certainly was that day! But this time, like the better bone scan experience, was a breeze... with a valium! It was a lot shorter, and as my knee was scanned, I wasn't smack-bang in the middle of the tunnel. I was starting to see that MRI scanners have been updated in the past decade or so.

Back to Dr Ortho, with an MRI scan that showed some abnormalities, some fluid and evidence of previous injury that had healed, or repeated minor trauma. Once again, non-specific repeated trauma, and again not really explaining why I had the Pain. So, this was how the Name Game was being played: moving back and forth to specialists and doctors; sent for scans which show something, but not really anything specific/acute, but we were ticking off the list of possible other causes.

While this was all going on, I ended up seeing a chiropractor who was referred to by a friend of my mother's. I was a little hesitant, as I had seen one 20 years ago. I'm really not a big fan of hearing any clicks or cracks in my body, and to be honest, I'm not a big fan of being touched anyway! However, my mother took me to him and we took on a course of treatments, three times a week. In the beginning, they did a full work up. They looked at my weight bearing, and it turns out that my left leg; the one I was having the more "normal" pain in (as opposed to the CRaPS right Pain) was bearing 10kg or so more than the right leg. They took some photos of me to show my spine alignment and posture, though these unflattering photos really showed me how much compensation my body is really doing. CRPS has distorted my body more than I really notice day to day. My shoulder sits lower, my hip sits higher to balance. My right foot was starting to sit funny; when pain was particularly bad, I was getting small contractures that were turning my foot slightly inwards, and the inner side curling inwards. It was a big shock to see how distorted my body has become, it's hard to see yourself like that. It's not the sort of "normal" body you expect to see in the mirror. It was a bit of a blow to my self-esteem, my weight gain seeming rather minor next to this distorted and disabled body I actually possess now.

The chiropractor was a lovely man, who tried his best to help me.  On the whole, I think this intensive treatment had its benefits, but like all the others, it was only tiny improvements in function and didn't have any effect on the Pain. Nothing has helped me with the Pain itself. He asked me if I had ever been to a neurologist. This is around the same time that my GP was also wondering about another scary diagnosis possibility - multiple sclerosis. It was time to look deeper than just the legs where the Pain was. My unsteadiness, my twitching and tremor. Neurological symptoms that needed to be looked at by a neurologist.

This Name Game continues into Part IV: The Lame Game. We're getting closer to the name, the label. The increasingly thick stack of reports are building the picture of what is going on. Perhaps leading into an entirely new treatment option, one that was not widely available 13 years ago.

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...