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Wednesday, 3 January 2018

Do Borg running out of batteries dream of Duracell Bunnies?...


  



The unfounded fears of invalidity...


3 years ago at the beginning of December, my cybernetic components were fully integrated into my bio-neural systems. The installation process was drawn out over 2 surgeries and a 6 month recovery. It was also difficult and rather painful, but ultimately a success to my satisfaction; though many only see wheels and sticks and believe it otherwise. But it wasn’t for them that I did this - I did it for me: for the life I want, and for my nearest and dearest to not live with pain too. My world fluctuated drastically in these 3 years - for better and worse - but I would pay that price all over again for everything I have today. Even the unexpected surprises and dips in the road along the way.

For over 3 months now, I have noticed a distinct drop in the neurostimulation and more of those inconvenient symptoms that I had forgotten were so severe. Having a good time, it seems, made me forget just how hard it used to be! It drained my own energy faster than I could recharge with enjoyable activities. Unlike my mental systems though, my neurostim is non-rechargable. Typical of many electronics, it started to malfunction just before the end of warranty (the IPG gave a 3-5 year lifespan guarantee and this started 2 years and 8 months old!). To be honest, getting that message telling me the battery was low was a huge relief! The CRPS wasn’t getting worse, I wasn’t on a slow and steady decline into the invalid camp. It wasn’t all insurmountable: I just needed a simple hardware upgrade. Solvable issues are much simpler to deal with!



I was told not to anticipate getting my replacement surgery until next year (early- to mid-january) because my neurosurgeon was fully booked for the rest of the year.  There was also the very real possibility my battery would fully empty and be no more before it could be replaced. December may not be summer on this side of the world, but things certainly slow down around this time of year as if it were. I was mildly annoyed, but I had already made my plans for mitigating the disruption to my general pain management stability. Stability is the prize I seek in pain management, not a reduction of pain. So, this was my own crisis plan.  

There is just one major problem: I am perhaps more vulnerable right now than I’ve been in a long time. The fluctuations between good times and bad times are far greater right now, than they have for many years. The memories of good times too fresh in my mind. And like similar vulnerable moments in my past - I stand to lose much of what I have gained, should I waver in my conviction. I could hold out if I knew there was an end in sight. There simply wasn’t any other option, because there is no going back, no second chances. This is the path I chose to walk, figuratively speaking.


Battery-save mode and higher stakes...  


In my own version of booting into “safe mode”, I had to pull back from things I love; from social circles and interactions. I couldn’t always play the same game of normality as everyone else. Luckily, there hasn’t been a lot of that in my life anyway! I missed out on yet more social occasions with nothing but pitiful excuses and feeling like a flake. 

My viewpoint on many things have changed though. While it sure hasn’t been an easy 3 years since the first “installation” surgeries, they are not years I remember as being particularly distressing or traumatic. If anything, looking back on them now with surprisingly rosy glasses isn’t delusional, but how I feel about these years as a whole. When the good times outweigh the bad, that’s a win in my book! There have been some dark times, but the darkness didn’t defeat me. Some of those good times were in very dreary places, with so much out of my control. I found my own peace in the acceptance that life is absurd, but yet in the absurd, is living. 

What was interesting on the whole though, is observing how the new “full-disclosure” policy would play out in practice. This is the first time I have been an open book; uncensored, unshielded and uncut; about my reasons for being absent. I tried to avoid TMI, or having it being a deep, dark and shameful secret. At least, trying to avoid the ‘too much UNINVITED information’: if I am asked, I’ll tell. Directly, factually, and God forbid - clinically. Still very much me, only no secrets to hide - why should I hide my reality anyway? I had no shame about who I was, felt it was no deficiency of my own to not be superhuman at this time. In fact, it was a glorious joy to have such an easily fixed and temporary situation for once! 

 This is the life of a cyborg, a disconnected Borg drone: needing upkeep of the electronic and surgical kind. This is what it entails. Of all things in my life; this is the result of the life-changing decision I took up wholeheartedly, with both eyes open. In deciding to get my neurostim, I took on all the risks and responsibilities. I accepted that failure could happen, through no one’s fault; that it may not work in the way that I hoped or expected. That included accepting that even if all goes perfectly, I still would need surgeries every few years, forever more. I could hardly complain now if things get a little unpleasant after regaining so much. Health wise, things are much different now. Hell, I’m different now. 

Like it or not, my asthma can be unpredictable without reason, which makes it all the more dangerous. 3 years ago, I would have 100% elected to get my replacement under general or sedation. I may have even been happy to wait longer for that. 3 years ago, I hadn’t yet the memory of spending 3 months all up over a 7 month period in hospitals. I certainly wasn’t in any hurry to spend any more time in those places than necessary. These days, the risks are much higher stakes for me, it isn’t a simple decision. Sure, I could take some prednisolon, nebulise, perhaps I wouldn’t have any issues under general. Was it really necessary though? I was already taking a tricky cocktail of medications, a delicate balance to keep all my systems from falling apart. This multi-pronged approach perhaps being the only thing keeping my asthma stable. I really did not want to test it out for something as minor as fear. As it was, I would need to monitor my blood levels of one drug, in order to take the prophylactic antibiotic safely to prevent the greatest risk of failure - post-op infection. 



Getting better acquainted with Fear: Pain’s other half...


Why bother with making life more difficult just from fear that can be overcome? It is illogical for me to be frightened about being conscious again during surgery; after all, I had already done the scariest part! Seems a bit late to be worried about stuff like that now, isn’t it? 

So, I decided the risks weren’t worth it; my fears weren’t worth it; the disruption to my life really wasn’t worth it. And, turns out - my time definitely wasn’t worth it. Electing to do it under local, I managed to be slipped in on the very last day of (elective) surgeries before the Christmas break. Merry Christmas to me on Yule’s Eve! Solstices, equinoxes and new years are all special days for me. I may even have been one of, if not the last, person to be operated on this year. I think I was able to get in so soon because it was so straight forward. No sedation, no anaesthetist, no vitals to watch, no recovery and overnight stay. In and out and home for dinner (I hoped, but I never count my chickens before they hatch!)      

After observing how far my fear played into my distress and pain of the former surgeries, I decided this time to make my own experiment. Why not? Something to keep me amused and distracted anyway, distraction being one of the more effective pain management strategies around! 

  • How will my experience be; how much pain will I feel if I go in there NOT expecting it to hurt? 
  • How will my experience be remembered if I treat this as a normal, every day thing to have done? 

Nervous anticipation is normal, a bit of apprehension too. However it is deep, primal fear that gets me in a distressed and panicked state that has greater ability to turn an experience painful than any medical experience itself. 

And should I find it unpleasant or painful:


  • It is merely temporary, unlike CRPS pain;
  • What can I do before, during and after the surgery to make my vantage point, my inner self, more tolerable in that powerless position? 
  • Is my fear an enemy to be vanquished, or befriended?

Fear has a huge effect on the flavours and tints of memories stored and remembered long term than the procedure itself,  or even a particular period of time. Pain is, in most cases, a memory of all past pains amplified. Anticipating pain can make pain worse in stranger ways than can be explained by a simple nociceptor response to actual injury. Pain morphs in our memories into scary nightmares that are burned deep and eternal. My body seems to have perfected the art - I wasn’t going to help it out this time!

Not only was this the perfect time to test these theories out, but also the perfect lazy time of year where I could recover in peace without losing too many opportunities to do that which I love. This is a blessing, something I am truly grateful for. It came all together in that wonderful spark of the divine, where I know it was for a reason. I know this feeling well from travel, and trust it. During this magical and mystical time of year when we, throughout history, have fought through the darkness, waiting for the sun. The nadir of winter to the return of Sol Inviticus.  

    



Wednesday, 29 November 2017

My body is a battlefield...

Musing meditations into the BPS model of Pain...





When you live with chronic pain, but moreso with CRPS; there are going to be times where the pain unfortunately is going to win more battles than you. Because CRPS turns your body into a battlefield. There are times when you can push the enemy back behind its lines, reclaim captured territory. But there is also the times where you are going to have the enemy incursion destroy so much territory that you need to relinquish it forever. It is a war that will be fought by me for the rest of my life. Sure, cures can happen any time, but it is unlikely. After 16 years of unrelenting pain and destruction, I wouldn't know where my limbs are in my sensorimotor cortex if pain and CRPS were to suddenly vanish. I barely know where they are right now. 

It's not that I don't wish for a cure - of course I do! But the chances of it being effective in my case right now are slim to none; an actual cure would always be more effective in the early stages, before the changes become more fixed. A cure may allow someone to not lose so much of their bodies and years of life to the disease. They could live a normal life again. There is no turning back for me, the life I live right now is my "normal life". Even if a cure would work for me, it would take a whole lot of rehabilitation and relearning basic skills before I could even function. Would all that be worth it in my case, just to not have pain? At this stage of the game I cannot, with 100% certainty, agree. 

Saturday, 14 October 2017

Reexamination of Pain Perception while getting my Spinal Cord Stimulator, part 2...

Getting my spinal cord stimulator (my neurostim) implanted was possibly one of the most intense experiences of my life. While it was definitely painful, it was a temporary painful experience for a longer-reaching goal. It was an active choice of mine; one that I took complete responsibility in making, enduring, and accepting whatever consequences that arose from it. Come what may - taking responsiblity was a powerful position to be in. Passively undertaking treatments or therapies always made me feel overwhelmed, powerless. I don't care for that at all. Knowing and understanding the risks and life-long consequences gave me the option to decline; but even if the worst did in fact happen (paralysis, damage, infection... the list goes on!), I was prepared to accept it. The gambling risks we take for a greater windfall. 

My original intention was to sit down and write the whole experience in a clear and orderly fashion. I even did a series of paintings to illustrate my journey. I wanted to write down exactly what would have helped me make my decision back then (pros and cons, observations etc). I may some other time, but the painting of these moments gave me more to ponder, to explore beyond the factual sequential steps it took. It gave me more questions, more thought waves to surf and ride. It needed its own post beforehand, because its implications are far wider than I imagined when I sat down to sketch out my memories of moments, my self-portrait snapshots from the cheap seats.




Wednesday, 13 September 2017

What comes to mind when I say I'm a one-armed swimmer?


It is no secret that swimming is a big part of me. It not only was a good therapy to get me moving again after my legs were taken by CRPS, but it also made me realise how much I could accomplish if I put my mind to it. If I could teach myself to swim well enough over longer distances, using one arm and minimal leg movement, there was no limit to my abilities if I was willing to put in the work.  

I've proven my own strength to myself over the years, but putting myself to the test, pushing myself beyond my limits was the only way I could truly find out what was possible. Dancing did it, backpacking certainly did, swimming even more. I realised that even while becoming more disabled, I was still finding my own superpowers! I couldn't swim when I first got back into the pool 4-5 years ago. I had to figure out how to propel myself with one arm through the water. I watched paralympic swimmers, breaking down their strokes and tried to figure out the best one for me. To narrow down the most efficient stroke for my body, what works for one will not work for another: people with disabilities are even more varied than people without. One CRPS presentation will always be different from another, even if the same regions are affected and similar progression. 

 This is a few videos of me swimming, one from recently - this summer. The other is from a year and a half ago, while I was in the pulmonary rehabilitation hospital, where my stroke was rougher, and they weren't as encouraging of my high intensity efforts! When I tell people I go swimming, I don't think this is what they pictured after seeing how I get around on dry land! That is my rollator there at the end, my wheeled legs to navigate the world on dry land. 

Monday, 11 September 2017

Getting my Spinal Cord Stimulator Implant, part 1...


I have been cybernetically augmented with my neurostimulator implant now 3 years in December. It was fairly difficult, rather painful and unpleasant at times, long waiting and even longer recovery. Nonetheless, it was a success FOR ME in what I had wanted; though others may not grasp my goal not being a complete removal or huge reductions in pain. People may see my unchanging limitations as something to feel bad about, but I most certainly do not. Because I know where it used to be, how hard I had to fight every single day. How hard it was to put a smile on my face to not show how difficult and painful everything was. Before my batmobiel, before my rollator. Before my neurostim. 

You see, today my life cannot be further from that time, when everything was magnitudes more difficult. I fought like a trooper to do as much as I could, and paid the price. One single trip to buy some groceries, or to see my friend, would usually cost a week (often more) of flare. If I wanted to swim, it became so frustratingly difficult that I couldn't maintain it regularly. Shame too, because it was the biggest driver of my life! Swimming was where I found my power back, regained my confidence, asserted myself and found my younger self again. The younger me whose destiny was in my own hands. Those years of swimming, the fish growing up in Australia, surrounded by beaches and bush. 



Tuesday, 29 August 2017

Oh the humanity! Suffering Images and Projections...

I've been busy lately. Hurt people's feelings, offended others. All in a day's work, I guess. Not that I do it on purpose, but I can be blunt. I am direct, perhaps not very well attuned to the correct social protocols needed in a constant war against truth and what people want to hear. I sometimes lose respect for those who cannot cope with disagreement. I don't attack personally, I may refute statements and provide examples, flaws in their reasoning. It isn't my fault if they cannot defend their position: why say provocative things if it is just agreement you seek? Perhaps tell us in the beginning, so we know in advance. Especially if you are going to spout hate and make groups of people think they are not equal; be able to give reasons for it rather than playing a victim card when someone else finds faults in your logic. If you are being hateful about people you don't know, or about stuff you need not concern yourself because it is none of your business - you can hardly play victim now. I wasn't judging you before, but I certainly am now. Ignorance is one thing, something that can accept new viewpoints even while steadfast in ones own. Willing to understand, perhaps be convinced, or differing viewpoints. Soundbites to think about. But spreading hate for hates sake, well, you deserve my contempt for wasting my time. 



Wednesday, 9 August 2017

The Persistence of Memory and Coping...







I came across this video on one of my vague youtube wanderings. It came at a perfect time. I'm really intrigued by Professor Luc Bovens' philosophy, as it fits me much better than the whole optimistic delusion. Some time ago, my psychologist recommended the book "The Happiness Trap" and "The Reality Slap", I can't remember the author. However, it was while we were discussing positivity and whether it is always helpful. Sometimes we end up discussing greater philosophical questions - exactly what my mental health needs! My psychologist has been a member of cheer squad these past few years. She is very no nonsense, pragmatic and exactly what I need in a psychologist to keep my head above water. 



Saturday, 5 August 2017

Epistemology and the möbius strip of pain



Debating faith and the human condition... 



I have a friend who is very dear to me. I call her my sister, because neither of us had any. To be honest, we argue like sisters too! I'm an experienced bossy older sister already in real life, so I am a natural! We challenge one another. Staunchly defend our points of view. Asking poignant questions or reflective rhetorical reasoning. I love her to death! I learn so much from her, even while I'm vehemently disagreeing and proving my own case. Even if we remain in disagreement, we still both learn a lot from the exchange. She makes me think in so many ways, and challenges me to defend my side. I often come up with more and more realisations and connections to tangental concepts and patterns while I am in full on debate mode! I loved debating in school. I got on that team and i loved it! It gives my life spice, it released a truckload of feel good endorphins. Who needs to take drugs for those sublime moments, when there's plenty in real life for the taking! 



Sunday, 23 July 2017

Laying oneself completely bare...



While I hesitate to tell people, and I shudder to think what my extended family would think of me, probably wouldn't surprise the rest! I never hesitate to experience new things, even if I am afraid - terrified - to do so. I love to have my eyes opened up; living in a profound state of peace and that will never happen while being afraid of what others may think of you. I might not share it with everyone; not because I lie, hide or mislead. I need to be sensitive to the wonderful differences we all have, and I understand that other people are more afraid, or will not understand. That's fine, if they all did, how boring is our world? 

Tuesday, 11 July 2017

Mirroring Music Box and Neuroplastic Neural Networking...

Yes, I love aliteration! There have been many times in my life where I feel true insanity. Usually after long periods of hermit-itis, and long sleepless nights in Pain where I ponder my very existence and ability to withstand it. Then all of a sudden I crash into the world again (sometimes quite literally!) with a huge drought-ending outpouring of words, images, sketches, paintings; making huge leaps in my skills as I trust in my hands again. It's like an obsessive compulsion, I can barely control it, nor resist it. My head is screaming at me to 'shut the [insert choice word, multiple language] up' while I ramble like a crazy woman. I don't know if it is me trying to redirect people from seeing the rollator or batmobiel; that odd 'maybe talking will cloak it invisible...' idiocy! Or maybe I'm just nuts. I'm the queen of making an arse of myself, so... still the same person, I guess!

I'm working out this wild wild west of social media, where to put some sketches here or somewhere linked. There are particular sketches which I really want to share here from a neuroplasticity standpoint. Because, turns out... there's some freaky shit going on! Stuff I may not ever have noticed, or even learned without 16 years of doing some really hard work reframing my Pain and fighting the instinct of immobilisation. Gentle, flowing, MIRRORING arm movements from dance and discipline; lots of vain staring at myself in a mirror, moving and controlling. I was determined to fool the world into thinking I wasn't in pain or struggling to know where my arm was if I wasn't looking at it. Later, somewhere around 2009, I got my mirror box, so worked on it on and off. Honestly, I was less disciplined with this than dance, but all in all, the aim was the same. No one can see how much pain I am in. I want to be 'normal', not judged or treated any different. It was only the sharpest of eyes that detected anything was amiss, but it was subtle shift of dominant and non-dominant sides, brain connections rewired in strange ways, but working in ways that none of us could have predicted. 



This is both of my hands... sketched with both of my hands! Lefty sketched Righty, Righty sketched Lefty. Small differences,  but not so different that you can instantly tell what's up!  



Friday, 7 July 2017

Regarding work, and the greener grass...



Sometimes, people make thoughtless comments which affect me somewhat unexpectedly. I'm pretty thick-skinned now, so i'm not running off and crying about it. While i know there's no malice in these people's intent, i find myself going over these statements in my head. Pain has been playing havoc with my sleep lately; so going over shit in my head while i'm trying not to give attention to Pain isn't really helping me sleep. 

I've been feeling very strong in who I am. I've found my voice again, reaffirmed my power. I accept my disability more than I ever did before: it's not that I like being disabled, but what's the point of wishing for something that won't ever be possible? I made friends with Pain, Disability is just another member of this odd social group of mine. Pain is the whining, whinging, screeching complainer of the group that never shuts the hell up; Disability is the pain in the arse who always needs accommodating. It is like the one who can't just order something off a menu, but insists on ingredients being omitted, others being added; food prepared in a certain and annoyingly exact way and sent back if it's not. Disability is the Sheldon of my group! I hate being that one, I hate drawing this type of attention. The only attention I want is for that which I worked hard, or for the fun and lighthearted things in life. I wish my disability was my secret: invisible, hidden - my own business, not for others to see. Because it is not, all I can do is shield myself behind brashness and laughs; deflecting my own deep shame and embarrassment, as well as unknowingly offensive comments from well-meaning people.



Thursday, 29 June 2017

Anniversaries and celebrating how far you've come!

 I always acknowledge my anniversary of my accident, celebrate it even. I know this is hard for some to understand, but i think everyone should have at least one day a year where they look at where they are: where they came from and where they want to be. New Year also works well, birthdays have their own issues! This is how i keep focussed in what i want out of a life i just happen to share with Pain. I was a little overwhelmed by the response from my friends and family - people who have travelled at least some of the journey with me. Some of those people didn't know, which is a good thing. It means that i am living a life worth living. That i am not just KJane in Pane; disabled KJane; helpless, suffering, tortured KJane in Pain. I am KJane the dancer, the artist, the traveller! LIVING... An annoying Pain patient who exceeds expectations; who is extremely hard on herself, suffers no fools, no matter where, or who, they are! I like who i have become, with all my eccentricities and faults. I trust in my own emotional strength to overcome adversity. Everything has a solution if you work hard and think outside the box. This hard perfectionist has learned to embrace imperfection! 




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.  


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 sonmething - 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!