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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.




Surgery no. 1: Placement of trial stimulator electrode leads in my spine:



This was perhaps the most intense moment of my life. I had prepared for it physically (by working on my core strength for months) and psychologically. It was an incredibly emotional moment too, as I was hoping so hard that this would be successful, but knowing that the chances for success were lower for me. Given that I had already had the CRPS spread in my legs for nearly 3 years (under 2 years gives the best chance of success), and that it was a spread from one place already from a relatively minor fall, it could also spread in unaffected places from trauma (such as the surgical site). I also knew that it would hurt. Spinal anaesthesia is different from an epidural; it was localised anaesthesia, but I still needed to be able to give feedback on correct placement of the electrodes: the stimulation needed to overlap the painful region completely. This meant that it was inevitable to feel some 'discomfort', which is one of those euphemisms for pressure, unsettling sensations, and of course - pain. 

This was an image burned into my brain like a photo, tinted by my fears and anxieties. I'm sure my heart was racing at that moment, where I realised it was on. I couldn't back out now, no changing my mind! On my left in that image, was the anaesthetist; the woman on the right was my neuromodulation nurse specialist telling me to take deep breaths and remain still. My CRPS hand was in its dystonic contracted position (as usually happens when I'm tense, my spastisity comes out more)

The internet research I did prior, the surgery I had read about went down in a completely different way to mine. I don't know if it is because I was in the Netherlands, or if it was my neurosurgeon's technique that came from decades of experience (my nurse specialist told me they had been doing this since the late 90s, early 00s, so I really was in the best and experienced place). This was by far and in no way an  outpatient day surgery, with sedation and being woken up mid-surgery and heading home afterwards. This was rather major neurosurgery, no sedation and at least an overnight stay. There was nothing to distract me in that moment, aside from the gentle words and updates from my nurse and anaesthetist. There was no escaping the fact that I was being cut into, poked, stabbed and electrically charged. All I could do was breathe, count the seconds, minutes and dream of a cup of tea back upstairs in the ward.

The placement was relatively quick, I believe. Perhaps the timing became fuzzy in the overwhelming moment of time. I remember being told by the surgeon to expect a "crawling" sensation as he slipped the electrodes into my spine. "Kriebelen" roughly translates to a crawling, itching sensation, but it isn't the word I would have used. It was a very uncomfortable crawling and alarmingly invasive probing feeling travelling up inside my spine. It hurt. It hurt a lot actually, but it was a more disturbing and horrifying feeling than pain itself. Pain has different flavours of sensation. These were more disturbing forms of pain, given the knowledge of what was going on. What was quite painful, though, was when he tunneled the wires to come out my right side. He did tell me it would be a sharp feeling, so I was somewhat prepared for the harpooning. And 'harpoon' is probably the best description. It was definitely more than pressure, or a sharp feeling of an injection. But while it was quite painful, it was done quickly I guess; at least this part. This was all temporary pain for a greater gain! There's no place like home....    



Neuroscience of pain reflections on this moment...




What I realised in painting this memory, I wondered how much my expectation of pain and my fears of the surgery itself played into my perception of pain in that moment. Had I perhaps over-prepared in my usual manner? Could I have felt less pain had I no idea about how the surgery would go down; those queasy surgical intricacies that most people don't want to know? Did my knowledge and fears work against me in that moment? Had I been less fearful, less expectant of pain, could my pain experience have been more or less tolerable? How much I allowed my emotional state to play into my pain experience? It is an interesting idea, really. I know how much my emotional state plays into my chronic CRPS pain; that pain is worse when I am feeling strong emotions. Pain is always there, but my attention and focus on things I enjoy means that Pain takes the backseat. If I am angry, frustrated and furious, the pain is much more unbearable. Pain perception is such a complex and multi-faceted experience, constant and unchanging baseline pain means I am able to observe these subtle differences with relation to emotion. These were acute pain mechanisms, which work differently to chronic pain. Nonetheless, I still believed that preparation (such as women preparing to give birth) would lead to less fear, and less pain. I certainly expected it to be a difficult day and overnight in the hospital. I was prepared to tolerate it. But...       



  • Could my pain experience have been different had I not been so scared/fearful?
  • Was I in more pain during the surgery because I expected it to hurt?
  • To what extent was my pain during the surgery due to my mental/emotional state?
  • What could my experience of pain have been had I expected to be fully anaesthetised and unaware? 

This fascinates me. It is an interesting idea, how far emotions play into pain experiences. Knowing the neuroscience of pain is something I rarely think about after 16 years. I am only starting to realise that I am actually in the minority of pain patients who know what goes on with pain, which I find sad - not to mention contributing to greater suffering and disability. Understanding the mechanisms of pain was a godsend to me. It gave me hope, regained confidence in my ability to not only withstand pain, but to break through any barriers Pain set in my way. Pain was not damage, so I needed to work with the constant false alarms while being careful to not miss a real alarm. I didn't fear Pain, haven't for many many years now since we divorced! To be honest, I think my lack of fear or bother about pain (and feelings) is very difficult for others to understand. I am so used to hiding so much of my life experience that I forget that others may not see things in the same way and may be alarmed at my cold assessment about something they find distressing just to hear about, or know of its existence. I find it more useful to examine it as a phenomenon, rather than an event. Especially while painting these moments, I learn so much more about my experience of pain in that time     

Nothing in my experience was really what I expected. For a start, I felt quite unwell in recovery. I was painfully shivering with a slight fever, so they gave me paracetamol. Swallowing it from lying flat on my back wasn't a lot of fun, but it was the highlight! I needed a catheter, because I couldn't urinate on my own (a common side effect of spinal anaesthesia). That was an experience I hoped not to repeat. Anyone who's had a catheter put in while awake and conscious will understand what I am talking about. Unfortunately it wasn't the last. Back up in the neurosurgery ward, I was uncomfortable, it hurt - a lot, but I was really just glad I got through the difficult placement part! Seeing my partner and mother there was really great. I was so glad to have my mother there from the other side of the world after such an overwhelming experience. She has been through it all with me, the early years of CRPS, not to mention everything else over the years. After dreaming of food all day and all the food I was going to eat when I could, I could barely stomach a buttered fruitbread slice! I had to lie fairly still for a while, but when I could sit up, I got the chance to examine the cords connecting my internal wiring to the external device. 


It was a very difficult night in the hospital once visiting hours were over and I had nothing to distract me from the strangeness of being there, and all the emotions that the overwhelming day had brought. I don't know how much of the memories of that night was actually real or not. It was a strange sensation of unreality. The cranky nurse ended up being the best needle-giver, after she told me off for not telling her I was in pain during one of her middle-of-the-night visits. I was in pain, of course. But in my position, after the surgery itself, and the years of living with pain: what actually defined 'pain'? I know that chart off by heart, all the VAS stuff they all seem so concerned about, but it has long lost its relevance to my own experience. I wasn't on that brink of wishing my existence to end (my 10/10) but I sure wasn't comfortable either. How many smaller increments sit between 8 and 10 for a CRPS patient? Pain for us needs a new scale, an adjunct scale to qualify the high score. "It's an 8, but manageable" or "It's an 8 and I'm feeling distressed because I have too many different pain signals at once". 


Somehow, like every other painful night, the morning came eventually. It brought new nurses again, and a brand new day. My first full day with cybernetic implants; my very own version of Garak's cranial implant in my spine. Or Borg technology augmenting my own. I cannot decide between the two, but why should I? Both are relevant and linked to favourite characters. Garak's was to avoid the pain of being exiled; the Borg were to enhance and modify the biological tissue with technology. Unfortunately, I was still hooked up to an external generator, wires out my side connecting my spinal and brain fluid rather alarmingly to the outside world. It was inconvienient to say the least, those long cords were ridiculously in the way! I would have loved a shower, but that was not going to happen in the coming few weeks. I had to re-embrace my backpacker days of living on trains! The nurse asked if I needed help washing. But that also wasn't going to happen while I had any say about it. Until I realised my predicament... no bending, no twisting, no arms above my shoulder. The nurse helped me with my lower legs and feet. And for the first time in years, I didn't want to scream when someone touched my legs. This was something. This really could be it - beyond my wildest hopes!     

I was really Borg now. Resistance is futile! Nanoprobes were taking over. Whatever happens during the next week, over the next few months; I was going to do everything ridiculously and meticulously right. I was not risking this incredible chance I had. Failure was not an option. I wanted my life back!  

It wasn't a comfortable drive home. I still felt very uncomfortable, invaded; something was alarmingly foreign inside my body. That itself didn't bother me. What was annoying, was feeling one of the connector pieces under the dressing. It hurt, all the places I had been punctured, cut into and poked were filled with strange 'normal' pain sensations that competed with my own normal pain. The bombardment of the two different types of pain gave me a headache. And I had a real headache too, from the surgery. I was tired, cranky and a unsettled by the new reality, with the memory of all that had happened. I was also a little scared. Of all the things that could go wrong in this huge gamble I had insisted on taking. But for that small chance that everything had worked kept me hopeful and feeling that it had all been worth it. Even while in this state: all wired up and taped shut  . 








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!

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...