Thursday, 1 June 2017

Pondering Powerlessness: Saving myself again...



Breakthroughs happen when you least expect it. I certainly wasn't. Especially while I have been feeling so low. Pain has been interfering with my sleep for quite a few months now, medications have been ineffective and sleep deprivation sends me insane. Too many long nights without sleep gave me a lot of time to think while listening to my Pain tunes: the playlist of music which gives expression to my pain experience. They are complex enough to focus on, rather than my Pain. There are also pieces in the mix that just give sound to sensation. I had been losing the battle, wondering if this was the natural declining progression of the CRPS. I was feeling powerless again; overwhelmed, anti-social and withdrawn. The virtual world on the interweb was just as scary, if not more so, than real life. The feeling of being judged by the faceless was more frightening than people on the street. All because of a few uneducated, stupid comments from people who should know better. I was becoming the victim again- I was letting the CRPS win. 

Something clicked a few days ago. This wasn't me. I don't give up the fight, why was I letting it win now? Depression didn't win; spreading CRPS hasn't stopped me; how many things have I overcome and won over? Why was I giving into this and losing my will to live? Why was I buying into the dumb things that were said some time ago, by people for whom I have no respect and whose opinion I do not value? Why should I have listened to that? Being told that I pushed myself too hard, that I was too perfectionist. No, I pushed myself enough to get somewhere, to function. I had high goals, but I also had a habit of achieving my goals. But what affected me so much that I nearly fell apart, was being treated as less of a person because I was disabled. "Handicapped" was their word. What is worse, I nearly bought into that bullshit too.  

So with this new epiphany, I dealt with that in the same way as I dealt with it in the past. I jumped right into something that was both terrifying and exhilarating. Outside the box, I broke all my rules and stared down my own fears. I put myself out there; dived into a whole new experience with people I didn't know. And just like my other magical moments of divine inspiration, it is incredibly primal in its immense joy; from following on the path it whispered to me, I realised that it doesn't matter. My spiritual path - that which gives meaning to it all. My purpose in life.  

For quite some time, I have been withdrawn from everywhere. Only interacting with a small circle of trust. I barely had words to explain it to myself, let alone anyone else. I wanted to update this blog, but I could barely cope with emails from family, let alone any form of social media. Perhaps if I had come here sooner; my safe world of my own soul, of my own creation; I may have figured it out sooner. Who knows? I certainly I wouldn't have such a crazy task to acomplish right now - how the hell to sum up the entirety of 3 years of insanity? I think I kept on the idea that I would document the process of getting the neurostimulator in nice and neat sequential posts. Then life got in the way and... here we are, a whole year later... than the year I took to get to the previous... YES, I am a slackarse cyborg! 


Neuromodulation: 
Cybernetically altered and improved - Jane 2.0 




I now have implanted technology, a spinal cord stimulator (SCS) or neurostimulator: electrodes wired up to my spine, an IPG - implanted pulse generator, which essentially is a big arse battery implanted in my big arse upper buttock! (I must be careful saying that in public!) and needing and can turn myself off and on (now now, I do mean my legs!) with a magnet or a remote controller to change the stimulation intensity (I need to get my head out of the gutter tonight! Hyped up late at night mania?) that I wave over my hip. Sometimes it gets warm under my skin when I have it on my usual high settings for too long, and feels as though I have a small phone tucked into a back pocket, only it's inside my actual body. It's really cool! And freaky. Insane really. Quite often it is also terribly embarrassing, sometimes ridiculously so; though always unexpected and unpredictable, it really has changed my life. 

However, I get more anxious in social settings these days, especially with new people. Explaining gets tiring, I don't want pity but I also don't want to be dishonest. Pain is a tricky subject. Peoples' own fears sometimes get in the way of understanding, which is only natural, I suppose. I forget that my experience is unlike others' perception of Pain, not everyone has made friends with their Pain. Still, I care less about what other people might think when they see me because those that I do have in my life know what I've been through and how much my life has improved. That doesn't mean it is easy to put myself out there, but I want to take the risks. I am pushing myself to do more and challenge myself to get out of this grey place I've been for quite some time. It's now time for a new beginning, away from being a medical patient - the strange experiment of being the unknown. The freak of nature. It was eye-opening, hospitals in general and a foreign one at that. Well, perhaps not so foreign anymore. I spoke dutch the entire time, even in the most difficult moments. Maybe I truly am local in the most intimate way. 

But even in the more challenging times over the past 2 and a half years - I would not change it for the world it has returned to me! I probably could not have coped with everything that went on, if my Pain had been as severe as it was before. Of the entire  full space of my four limbs, a total of 50% of it is CRPS Pain. Yes, I really can quantify this. I've been sketching a lot of people lately so proportions are really in my head! Nerve pain, all the time, no break, only fluctuations. With the neurostim, 2/3 of that is quite manageable, around 5 on the pain scale. The arm hovers around 8, the legs were too before: five is fantastic! Though the neurostim has its quirks, it has some... side-effects. Nothing untoward, just... quirky! It works well most of the time anyway. It does not and cannot remove the Pain; nor is it a cure because CRPS doesn't play by the normal rules. The right arm is as it is, still just as problematic. The Pain there will never leave, but I have pretty much beaten it into submission! It can hurt as much as it wants but I don't hear it! I won't hear its excuses now after 16 years. It really is a whining teenager who needs a job! Good thing I found it one! I make myself use it through the Pain, giving it the fine motor skills tasks while giving lefty the heavy lifting jobs. It is more bilateral, more balanced and in the long run, will help take the pressure off lefty and hopefully keep that last lonely limb CRPS-free!    

I went through a hell of a lot in order to get my spinal cord stimulator, it took about 18 months, from the first recommendation from my pain specialist in Australia back in 2013. That is including the time it took for me to actually decide to go ahead with it, and then find a good surgeon who does it in this country. It is still rather uncommon, and I had to travel far out of my city for it. I will write about the whole experience; information that I was really hard pressed to find while I was making my decision to go ahead myself. I found many stories about things not working out, or scare stories. It is a bit unbalanced. You see, those for whom the neurostim worked, they aren't sitting online complaining about it. They are out there living again! 

I really had to figure it out on faith in the universe and hoping for the best that getting the neurostim was the way forward for me. I trusted my own decision, then let it go. I was incredibly lucky every step of the way, but it certainly wasn't easy. You can never have unrealistic expectations. My decision was informed to the highest degree, so even if it didn't work out, I would have been ok with it. At least, I knew I would figure it out eventually. It will probably be a series of blog posts (and *hopefully* *probably* *I promise to at least try...* to make them regularly) at the very least, shorter posts are probably easier in order to keep a schedule of writing. 

To be honest, getting the surgeries and the 6 month recovery was easy pickings compared to what went on next. And it wasn't even related to CRPS or the SCS at all! I really wish life could be simple! It really has been a few long, invasive and somewhat dehumanising experience of the past few years while at the same time proving the most primal, most essentialy human things in us all. It taught me so much, about myself and who I truly am. 



Memento Mori
When life king-hits you and knocks you out...



When you spend quite a bit of time (as in, months) in a hospital or any type of rehabilitation/revalidatie as an inpatient, you get a little institutionalised. Privacy goes away, dignity too. But I am no fool, and I suffer them even less. I can understand in hospital it is reasonable to provide care, assistance and to be certain I would not injure myself while under their care.  But I am a huge pain-in-the-arse patient - I really need to be independent as much as I can be. Even more so when other aspects of my life are beyond my control. Unlike the kind offers of assistance from general public (no offence) nurses are more likely to be somewhat more "OH&S compliant", both for them and me. Nonetheless, it really isn't necessary for me. I am not afraid to ask for help when I truly need it, but most of the time it really isn't necessary. 

In the early weeks of my sudden and unexpected asthma exacerbation, I had no control over anything and there was nothing I could do about it. I felt utterly powerless. But I told myself it would just be temporary, a few days in hospital, then home. It didn't work out that way. All up over 5 months, I spent 31 days in a pulmonary ward of a hospital.  But those first 2 weeks were pretty bad. It is the most life-threatening situation of my life. Pain was never going to take my life unless I gave into it, but this could have easily killed me. It killed my father when he wasn't even 30 years old. But I was in a hospital, which certainly rates your chances of survival higher. I felt more distressed about the utter powerlessness of not being able to speak, to keep my own faculties. Mortified at the terror of being the spectacle. I was in a nightmare, lying on the bed in one of those horrible TV scenes where it all goes to shit. You know the scene: people bustling about the patient, curtains pulled sharply around and squeaky wheeled apparatuses are rushed in. All those doctor staring down at me, poking me with stuff; talking about me as though I wasn't even there. It is a confusing bundle of flashes of faces and sound. It wasn't all bad though. I remember just how wonderful those nurses were, fluttering around like butterflies and holding my hand. It made me think of my Mum, so far away. My Mum the nurse, whose care and dedication to her calling I've grown up with, working with those whose disabilities are the ones that society doesn't want to know about. She is the reason I am so strong, she instilled a strong independence in me, the fighter. 

Maybe it was that lovely hand-holding nurse I remember, or the nightshift nurse who bought me ice cream late at night while I was still awake. Or the lovely young doctor who took the time to explain to my partner what was going on. In the confusion and terror, I felt a very profound truth that I would be ok, that I was ok. That nothing would happen to me. There was a tranquility, a peace I found once I could actually express myself again. However, none of this made me feel any better about being the spectacle. They say that more people fear public speaking than death; public speaking in the old (non-disabled) days was no biggie for me - I loved it, in fact. Is being "the spectacle" to me what public speaking is to everyone else? Turns out, sheer embarrassment isn't my worst fear. Good thing too, I embarrass myself daily!  

I can solve most of my own problems, I've certainly figured out some cool crip hacks and workarounds that make me look like a spazzy weirdo power-shorting-out robot. My mum calls it "st vitus' dance"! I can't really control it, but I'm used to the spaz, I'm balanced. Mostly anyway. Despite all that - I can still do my own stuff and some downright nifty shit too! I would never have learned any of that had I accepted assistance for every difficulty. Saving myself rather than waiting to be saved. This is who I am, stubborn, determined and a pain-in-the-arse perfectionist. I can do anything if I'm prepared to give it time. Too many people make assumptions about you after spending no time actually speaking with you, but I too, made my own judgements and learned who was listening and not. 

The psychiatist came to see me in the second or third week I think, tag-teamed with the social worker; concerned about my mental state after being so unexpectedly and severely ill. It was a little odd, I got the impression they believed I wasn't being honest about my feelings; in denial perhaps. I was friendly but firm in my desire for my own self-determination. I explained that it was important for me to be responsible for my own self-care while a patient; setting up my own nebulisers etc., in my own time schedule. I explained why this was important to me and how it would improve my mental state. If I could control little aspects of my time there, things I am more than capable to do, it would make me feel less powerless. It made a huge difference, I was able to deal. I didn't tell them that it drives me batshit crazy to have to ask for stuff. Luckily, they did listen to me and left me (mostly) to my own devices. It made my time there much more bearable, especially since I was fighting so many battles with my body. I also learned pretty quickly not to give too much information to the general question: "do you have any pain?" in the BP/temperature/medicine check twice or three-times a day. There seemed little point, and I got tired of explaining. They did raise my as-needed pain meds, because tapering large doses of IV prednisolon was incredibly painful with CRPS and muscle cramps. Mind you, for me the psychological effects of tapering was more emotional to deal with. There are far worse things than pain.

Intriguingly, I ended up being the one who often had to explain CRPS itself (how I wish for something common! But CRPS is relatively unusual; in 3 limbs most definitely). I don't mind doing that. If anything, I appreciate being told by doctors that they don't know much about it and are willing to listen. Not only just about my CRPS, but the neurostim too. None of them really had seen them before. Even the pain specialist who came to see me was impressed! I was more than happy to show it off. Who knows what the future will bring, but right now my neurostim is the coolest gadget I have, life was so much harder before I got it.    

I am alive; more than alive - I survived - I THRIVED even. It was probably worse for my family and friends than it was for me. I realised that I would always bounce back, Pain is never as bad when your mind knows you're ok. I realised that nothing, not even this, could feel as mentally deavastating as those first few early years with my arm back in the early 00s when I was fighting so many separate battles alone. Unwilling workers compensation doctors; unsupportive university bureaucracy; unfair, and at times, bullying workplaces. Uncompliant everyone in that system, aside from me and my wonderful GP. I constantly felt punished for all my compliance and I fought back as much as I could. But I couldn't fight all the enemies against me on my own. No wonder I travelled to the farthest place I could think of when I could. Even pre-neurostim days were nowhere near as bad as those workers compensation years. 

Those years of my own private war hardened me up, made me more confident and certain in my own strength. I have won so many battles that I'm not scared of much. I get cranky at the stupid and superficial stuff, rather than the universe, which I suppose is pretty healthy. I am anxious in social settings, mainly because of other peoples' attitudes and beliefs rather than my own. I do as much as I can and soldier on, try to fumble my way through life just like anyone else. Sure, I make an arse of myself quite often, and I feel a sad nostalgic twinge for the innocent time before CRaPS entered my life. I wish I could be more "whole" and less of a drama for those around me, for it is only for those I love that I wish things could be different. I already know I am strong enough, but it seems unfair for those I love to have to live watching it too. 


It was a fascinating experience, defying expectations in sickness and disabledness. It wasn't really the life I had dreamed of, but yet I have so many good things; experiences of kindness and connections to others; that maybe it was. I decided when I was 17 that I would never revisit those depths of despair again. The darkest periods since have never touched the depths of 16 year old me. They were more out of desperation and not having any control. Being in control of my situation; even having some illusion of control, makes anything else more tolerable. That is my truest fear, the boggart in the cupboard.

Friday, 8 July 2016

Validity rules for the new Games: Turning a corner...


Finally, an answer. But having my suspicions confirmed, did it make me feel any better? Did it make a difference at all? I can't say that it did, to be honest. I still had Pain, I still couldn't walk; I wasn't really any closer to a solution or a way to work around this new disability. Well, not so much a new one anymore. It was 2 years now I had mobility issues, since that day when it all fell apart. Being right and knowing the answers in this didn't really make a huge difference. Where to go from here?


I returned to the Netherlands once again, with a wheelchair posse of airport staff and the sad realisation that this is the reality of my travelling future. This was the future of being disabled. While it sounds quite confronting, it really wasn't as depressing as it sounds. I could still do things, I could still be mobile and live. A wheelchair, a walking crutch or stick, really what did it matter if I was still out there in life?




THE DISABLED CLOAK OF INVISIBILITY...


Finding my new identity. I was still me, surely, wasn't I? But how much of being out there in life was I really? I was stuck at home mostly. Every time I wanted to go out for simple things, like groceries or bread, it became such a huge undertaking that a simple trip would take me days if not a week, to recover from. God forbid if I forgot something - if I forgot something and was downstairs, so sad too bad, there was no going back up! It was so difficult that even breaking a trip down into rest-break paused increments took so much effort; with the impossibility of the task soon becoming evident. I still did it occasionally, pushing myself to breaking point if only to get out of the house for a while.


One day I pushed so far that I came home, cried for hours and it took me nearly 3 weeks before I could even think of going out again. I was so sick of and so over always struggling, everything being so difficult, costing me so much energy that I just didn't have anymore. The unbelievable rudeness on public transport. By all means sit in that seat for disabled and old people if you want. But please, keep your eyes open for anyone who may need that seat. Don't wait to be asked to stand by someone else; because I can tell you that the very last thing I want to do is admit to anyone I need a seat for invalids! Frankly, you shouldn't need to be asked because one day, you could be that person who needs that seat. And don't pretend you can't see what is around you! Headphones don't make you invisible, neither does staring at your phone. Just being disabled is all you really need to become invisible...





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!)!


THE NEURO STUFF:

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!


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...