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. 

Figuring out new strategic posts on the razed battleground...

I couldn't walk because of pain in the beginning, but now I have atrophied muscle tissue, bone changes and displaced foot, not to mention reduced circulation, cold limbs and slower healing of minor wounds. Nearly 6 years of CRPS in my legs means there are already permanent changes. Not to mention what's gone on in my arm. Pain isn't the only problem, and to have an absence of said pain does not guarantee happiness! Just because a cure won't be for me doesn't mean it wouldn't be for another person. The problem is that there isn't a lot of funding going into this uncommon and unusual disease. It isn't profitable enough, any successes gained do not work effectively in enough of the CRPS population to be viable (that's how scientific research goes, unfortunately - majority and funding rules!) The only possible way I can contribute to very slim body of knowledge about CRPS is by doing everything in my power to arrest my own spread: testing out boundaries of possibilities as far as I can with the knowledge I have. Knowing with certainty that immobility is an enemy: pain will be there whatever I do, so better I truly earn it by doing fun and enjoyable things! Seeing if retesting pain neuroscience papers as my own guinea pig experiments can turn up new or novel directions that real research could potentially take; even if these possibilities are only explored in my own head for my own satisfaction. Stuff I've done for years, everyone needs a hobby! But I also need to share it for it to be of any benefit at all. 

For 16 lonely years, I've had to lead my own troops without a lot of guidance. It has essentially been most of my adulthood. I have however, been exceedingly fortunate in the people I have met who have helped, guided and supported me at different times. With all these opportunities I have been given, to not grasp them firmly and try with all my heart would be illogical. Add in some divine serendipity, old fashioned luck and pig-headed stubbornness - that's where you'll find me babbling away to anyone who'll listen! The understanding of CRPS back then was far less than today, and the internet wasn't as accessible as it is now. Even today, most doctors don't know much beyond the name (and PAIN) of CRPS. But I no longer feel alone. I am not fighting several skirmishes on several fronts (pain+CRPS+disability+inability to use my hand+workers comp+employer+depression+mobility+insomnia+educational bodies and so on), which makes life a hell of a lot easier!

However, for the past several months, I've been rather anxious about my increasing sensitivity and symptoms. I've been scared the CRPS has spread into my back around the incision and IPG pocket sites, as well as in my spine itself. Scared that all the sleepless nights and ineffective strong pain meds combined with ice cold extremities and crushing bone pain pointed to a general and irreversible worsening of CRPS. Terrified the neurostim had run its course in less than 3 years. When I made the decision to go ahead with the SCS, I had banked on having more time. I have been pushing my pain and body to breaking point, the point where I go beyond my usual compulsive swearing into uncontrolled screaming in my head; my very short fuse is even shorter. 

Notwithstanding, I refuse to make excuses to not do things I may enjoy: pain is simply not a good enough excuse anymore! My sketching nights need damn good excuses for me to miss them: weather, pain or discomfort are not worthy excuses. It takes having either visitors or better social events to go to, for me to miss out on sketching nights! Pain cannot become an excuse, otherwise I will never get anything done. Besides, look at all the things I have done while in extraordinary pain: the travelling, the dancing, the paintings.  Why should this time be any different?

BPS, or BioPsychoSocial model of pain; aka my Bossy Persistent Survivor mode of attack; aka that Brutaal Pain-in-the-arse Seeker method to sanity...

Intriguingly, these past few months have had some 9/10s pain levels, but my emotional devastation score (on scale of 0-10, 0 being 'fanfriggintastic' to 10 being 'I fear/hate/feel overpowered/depressed/suicidal about my pain') I would probably put my level at 3, maybe 4 after sleepless nights. I'm pissed off by it, find it irritating beyond belief, I'm cranky from lack of sleep and wish it would "SHUT THE FUCK UP!!!" But CRPS flare-up pain isn't devastating for me any more. It's happened before, no big deal. Ride out the storm....

For people who understand BPS model of pain (biopsychosocial), this is not unusual. Pain is such a complex human experience that cannot be compared. However, I can with great accuracy tell what my emotional state is like from my perceived pain levels. And when my pain levels go higher for weeks, my first port of call is: "How is my mental health? How do I feel right now emotionally? Am I sleeping? How socially connected am I? Am I isolating myself in any way? Why am I pulling myself back? Only once those are checked off my list will I go into biomedical causes for my pain in that moment. Usually it is that I overdid something, behaved like I wasn't impaired or limited in any way. Not to forget the inescapability of age. This happens quite often now! 

I am a perfectionist, I am also rather regimented and analytical in how I do some things. I can be both supremely disciplined and sloppily lazy, but in many ways I am the former. I go through this checklist in my head many times a week, because I know I cannot trust my body and perceptions. I refuse to fear pain, and I am not afraid to be bossy to get what I need. Direct honesty is something I cannot live without. Not speaking my own truth and how I feel, causes more pain in my body. Speaking with people whom I feel are not being honest with me also causes me physical discomfort. This isn't some made up stuff to engender excuses, pity parties or sympathy, but a very real thing. 

CRPS is as subtle as a sledgehammer crashing through your body, and holding tension or unexpressed emotions internally will always result in more frequent and unpleasant dystonia, as well as other physiological and vascular effects beyond my control. I cannot lie to myself any more, pretend stuff is ok when it's not. I also cannot tolerate being or feeling disrespected. I don't mean in some bullshit macho manner. Rather, if I feel I am being treated condescendingly, or treated to be of less value because I am disabled, I get really very annoyed. That's when I want to get all Jean Grey on the world, and destroy shit by telekinesis! 

This isn't about my inflated ego, but I respect others and believe I deserve respect in return. People don't need to respect me when I'm being an arsehole. However, anyone in official settings who treats me like some sort of idiot because I am disabled will often be in for a figurative uppercut and likely my reprimanding official tone. Perhaps even a little vengeance - attitude adjustment - though these days I chose my external battles carefully. I have been in non-stop pain for over 16 years: that is 6,000 or so days. Every single one of them I have battled it for 24 hours a day with no respite. I have pushed myself hard for many years to get as much function as I could out of limbs that I was gradually losing. I fought against my own body every day to keep the containment lines. I don't need congratulations, or to be some inspiration porn poster child bullshit; but my attitude, actions and achievements should be worthy of the normal everyday 'getting on with shit' respect. And there is much more to me than just pain and disability.  

Converting pointless pain into an efficient fuel, pushing beyond my own beliefs and limitations...

I have also kept my body moving in novel ways this year. I haven't been able to hit the distances of before, but I still swim once a week and am looking to increase my swim sessions and fitness. The sketching and painting has really been the most exciting form of physical therapy I have ever done. I could not have done better! More than therapy, it is a passion. I feel the same zeal for living as I did while dancing. Sketching musicians is merely my disabled form of dance! I have discovered so much from doing this. It has become my joie de vivre, my reason for being. After 5 years of social isolation, life-threatening illness, multiple surgeries and rehabilitation; I now have social circles that had nothing to do with being sick. I am no longer a prisoner at home, but someone who is able to take life by the wheel and drive. More than all of these positive things: I am happy with the person I am, who I have become. This is perhaps the most valuable thing I have gained this year.

However, it doesn't explain my stab-my-eye-out-with-a-fork pain; spastic limbs on fire and frozen at the same time; inability to sleep more than 4 hours for more than 3 months. The icy cold limbs that are not playing fair; cramping, tremors and dystonia which shouts out that which I had hoped to keep secret. Small scratches, blisters or minor wounds that don't heal quickly. This is more than just a flare up, but a downward trend.  It's rather annoying! Additionally, I'm rather unimpressed with my body's refusal to bow down to current scientific knowledge. How can I preach the BPS gospel when my body doesn't play fair? 

But it does bring up an intriguing idea. While in as much pain as I am, without embellishment or exaggeration, I still seem to be able to leave the house at least 2 or 3 times a week. This is rather positive in itself, something I haven't  managed so well during other times of instability. I am able to participate in social occasions, and push through to do activities I value. Is it all down to my good psychosocial scores, that overpower/override my pain perception? Is that what it is keeping me afloat when my tanks are empty, and keeping my will to live when previous times I've wanted to give up and let it take me? What is it about my coping skills that have become an integral part of who I am right now? Because previous periods of instability have hit me much harder psychologically than this time. I am genuinely happier today than for much of my life, and I seem to be rather happier than others who do not have pain or other chronic conditions. Why is that? 

Could I actually be so self-deluded and in denial that I have no idea of my own emotions, like that revalidatie doctor tried to convince me? I really don't think so. But one cannot fully discount medical advice, even if I have little respect for them personally. Sometimes arseholes can have a relevant point, even if they don't really know what they are talking about. However, there is so much I am passionate about right now and life is still as full of wonder as during those highlights in my life. Severe pain is a major annoyance, but not something making me wish my life would end anymore. Pain hasn't become less severe, or less unpleasant, only my emotional connection to it is reduced. It hasn't really stopped me from living. Though it does get in the way of everything I love and everything I want to do, it merely requires figuring out hack solutions, or relinquishing the old and finding something new. Pain's strength isn't as powerful as my own will and sense of self anymore. In fact, it seems significantly minor on my drama scale, and laughter crashes any drama to the floor! 

I remember hearing something about basic training in the military being about psychologically breaking an individual down to their basic elements, pushing them to their breaking point - past their limits - and seeing what's left of them to bounce back. Who will crumble and who will still stand tall? When shit hits the fans, you really need to know who will be able to be relied upon. Pain has brought me to my knees, disfigured me, destroyed all the best elements of who I was before, and forced me to confront a self-image I never wanted to see. Forced me to stand up again, when all I wanted to do was crawl home and die. The deep sense of shame I used to feel about being defective is long gone, I've lost my embarrassment about being disabled, and in my own reflection. Why should I be ashamed about being human? My body is a battlefield, my wing is broken, but I figured out how to fly again. And who needs legs when you're soaring in the sky? 

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.