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.