Bushfire smoke and hospitals on holidays!

I need to share a story about some of the realities of making a life with all-consuming pain, when something goes wrong. It is something so intensely private and raw for me, but yet this time it needs to be shared. 

I am currently on holidays in Australia, where I brought my toddler for the first time to meet all the family, and spend some time grounding myself back home. What I didn’t plan on, was finding myself in hospital. These bushfires are some of the worst I have seen, after growing up seeing many bushfires in our local area. The air quality is so bad, that despite my best efforts - my strictly adhered-to asthma plan crafted by my respiratory specialist - I found myself admitted into hospital. Sometimes you can do all the right things: seeing the right people, follow your treatment plan exactly; sometimes it just doesn’t work. Sometimes you cannot control everything. 

As I was lying in the ED the other night, I told myself I would get a few treatments, and be on my way back home. Because I had done the right things, followed the rules. My body had to play ball too! But my body had other plans. The asthma symptoms would not subside, after huge doses of salbutamol and oral prednisolone. So as I was wheeled into resus, and accepting that I was going to be properly admitted, I thought about how annoying my body was being. Why doesn’t it play fair anymore? I was also really feeling my usual anxieties of being in hospital, remember past times with nothing in my control. This time, being separated from my baby. All this in itself,  is pretty intense. But with continuous pain - pain that was unrelated to what had brought me to the ED. I had to force my pain and all my immediate emotions into a box, because there were more pressing matters at hand. I was given IV steroids, magnesium and more salbutamol to get my symptoms under control. 

The major side effects from all this (which I had hoped would be balanced by the anti-inflammatory effect of the steroids) was painful cramping and dystonia in my CRPS-affected limbs and tachycardia. This has happened before, so I knew it was a possibility. A side effect of steroids is depression and anxiety. However in a situation like this, the life-saving priorities are clear and anything else comes secondary. 

In the ward the next day, I tried to distract myself from the intensifying pain in my CRPS limbs that came from the excess adrenaline and the immediate danger being over. I sketched completely non-dominantly (usually these days I sketch somewhat bilaterally), I listened to my pain soundtrack to push myself through it. I pulled everything out of my coping bag, trying to stop the fall. But I couldn’t. I still got locked in that terrible world of pain I couldn’t escape; where no one could enter, nothing could help. Where my intense physical pain melded with my anxieties and fears. My emotions about being in hospital - again - for asthma. All my fears about everything. My pain consumed me in crushing fire that could not be put out, as mentally devastating as the bushfires which caused it. 

And I had no words to tell anyone what I was experiencing. I had no way of asking for help. It was that private hell that pain becomes. So I pushed the nurses away, built that wall of steel around me and drew further within myself. Essentially, I achieved nothing but a complete crying meltdown in the end! 

It is a difficult position to be in, because I knew that this pain wasn’t just from the salbutamol flared up cramping and CRPS. The emotions and fears that came with being in hospital for a life-threatening event, coupled with less emotional control and discipline than I am used to having played a huge part. Either one on its own was manageable, but not together. I knew, intellectually, that pain meds cannot really help for all those types of pain. But my refusal of them was also illogical in that situation, because there was a clear, short term need. Pushing through pain because it is ‘normal’ in abnormal circumstances would not help in my recovery back to that ‘normal’. How many battles did my body and mind really need to fight at once? And why couldn’t my brain see that I was being so infuriatingly irrational? (the steroids!) 

I’ve spent a lot of time in hospitals, and each time I have learned a lot about myself, and my own pain coping strategies. While I hate to admit it, having these meltdown moments give me the biggest realisations of the barriers of my own creation. Where there are weaknesses in my coping strategies, or where I am too rigid and inflexible to changing circumstances. These experiences are also where I learned to verbalise what I needed from others better, while maintaining some small but vital degree of autonomy when all control is lost. 

Long story short: the moral is about compromise, rather than all or nothing. Pain, unfortunately is often all or nothing. It is a hard lesson to learn: to compromise with our bodies, our pain and when circumstances beyond our control go up in flames and smoke. 

The software update that made my legs go offline...

... and what to call the offspring of a cyborg?

Pondering problems of a posthumanist nature

My neurostim - the control center

It has been 4 years since my life changed, when I got my spinal cord stimulator fully installed. Of course, it’s been a very dramatic rollercoaster 4 years with many dips and turns. For all the information I read about it being a “minor surgical procedure”, it certainly wasn’t the case - don’t believe everything you read! I don’t know if it is different techniques, or just different countries, different surgical specialists. But with each step along the arduous process of getting approved here, I was constantly reminded that it would be no walk in the park. I was in hospital overnight for both surgeries, 3 months of very strict rules about activity (no bending, twisting, raising arms, lifting more than 3kg etc.) and it was 6 months before I actually felt “recovered”. I have since had a C-section for the birth of my son. In contrast, the C-section was relatively easy, far less painful, and I felt so normal after a few days, I forgot I had even had the surgery. A gorgeous tiny baby can make anyone forget about how they entered the world pretty fast!

That C-section was the fourth surgery in 4 years, and brought my hospital incarceration total up to a full 12 weeks. If I added all the hours I spent sitting in hospital waiting rooms, or the long list of different specialists I have seen over that time, it would be far longer. No wonder I am so slack with writing! Still, it doesn’t really bother me that much. It was in all these medical, social, physical and psychological dramas where I found my voice. I finally began to own myself, accept that defective body of mine and learned to work with its limitations to break through them. I survived it all, and thrived in the end. All the proof I need is in my sling right now - my son, my little miracle baby. The baby I never knew I could have, my little SCS-zapped bundle of joy.       

What does one call the baby of a cyborg? Cybaby? Cymini? Baby borg? Even with my rather good research skills, it was damn near impossible to find any information at all about women who had carried a baby to term with a neurostimulator running full time. There were a LOT of warnings about it being untested, or not recommended. Or that the neurostim strictly should be switched off for the duration of the pregnancy. There are a few published case studies in the medical literature, but they were very few and far between. In more than a decade experience in this specialised field of neuromodulation, I am only one of two patients of this hospital who fell pregnant and gave birth with a SCS; but the first with CRPS and who had the neurostim active. My more complex medical history made it even more unique. That was a little unnerving for me to find out, but the average age of patients is in the 50s, so it was unusual for pregnancy to even come up. There are no guarantees in life, even in the rigorously studied and tested fields. I did win the lottery, but I also knew there were many risks each step along the way. I was in completely untested waters.

Without the SCS, I can barely walk, barely sleep nor retain my own sanity. My medications were on higher doses, and I was essentially housebound. Most women wish to be able to follow the ideals of pregnancy: no medications (no untested neuromodulation), good diet, frequent exercise, all natural; well, let’s just say my pregnancy was different. No woman would ever want to put her baby at risk, but the risks to my health (and consequently - the baby’s) were too great. The times I was flared up, I felt the baby’s activity change in alarming ways. I do not believe I could have carried him to full term without the neurostim and very thorough and comprehensive multidisciplinary care.

I was actually very fortunate to get my replacement IPG a year ago. The first lasted just short of 3 years. The hardware upgrade was fantastic, far more one-handed user friendly with no wand to hold in place while searching for signal and changing settings. Everything is an app and bluetooth-integrated these days, even implanted neuromodulation technology. My ipod patient controller means more to me than my phone! I tailored my programs to different tasks, and different times of the day. Which meant I get far better use out of the neurostim than ever before. Even heavily pregnant like a beached whale, I was still able to go out and live my life. I cannot be more pleased with it! It gave me my life back. My quality of life is far higher, and my pain management runs with far more stability than ever before. My pregnancy was difficult, but it could have been impossible, unbearable.

Even in the first 6 months of my baby’s life, I have managed quite well. I am in more pain, but I expected to be in more pain. The price of having my son is worth the extra pain I have. The pain remains severe, but manageable after everything that I have gone through these past 18 years. I am figuring out my adaptations, but I am struggling far less than I expected to physically. I am less mobile, less able to live the life I lead before. Which is normal. To be honest, it is the most normal experience I have ever had in my life. I always wanted to be normal. Normal pain, and freaky Pain combined, but there is no mother, no parent or caregiver of a baby who doesn’t experience the highs and lows of caring for an infant. And every one of them is willing to pay that price, for the joys of tiny fingers wrapped around your own, and bright innocent eyes staring deeply into your soul.

All was well… Until it came time to update my patient controller to iOS 12. That’s when it all went to shit!

The pitfalls of being bluetooth integrated…

For security reasons, I need to make sure the updates are stable and approved by the neurosurgery before I do them. Which I tried to do yesterday at my yearly checkup. It wasn’t installing, so I waited until I got home. In the meanwhile (the journey back home was 2 hours), I could either have the neurostim turned off, or on maximum with no ability to change the settings. I chose the latter, as I rely on it so much to actually walk, and the pain is masked enough that I don’t go crazy. I had an emergency magnet, in case it got too much and I needed to turn it off. The magnet is like an emergency stop, and it also works as a coupler/bluetooth pairing and reset. I never carry it around, for fear of wiping my bankcards! I got home, and tried again to install the update, and still could not make it work. After looking at apple support, and googling, I saw that this was an issue that wasn’t just neurostim patient controllers, but a common one for many iphones and ipads. It was suggested to try installing the updates through itunes, which was a roundabout way to get it to install. I fired up the (windows) desktop, which drives me batty because it itself is slow to update (because it is infrequently turned on), but I patiently waited and waited and waited while it went through its own updating….

Finally, I was able to install the iOS 12 update through itunes, but it was a rather tedious. Phew! I thought. Finally, I can turn the “outside maximum” settings down to “around the house moderate”. I followed the instructions to add the IPG and pair it with the app. Nothing is ever simple, though. It took countless attempts to even see the IPG, all the while I was waving this magnet around my upper hip like a lunatic, pushing it deep into my bare skin, wondering if all my post-partum fat had made the pocket too thick for the magnet and IPG signal to connect. Actually, fat needs to be deeper than 4cm thick for that to be a problem. Mine wasn’t, but I am rather annoyed by the vain concern of my plump post-baby figure, and was clutching at straws to explain what was going on! Finally, it was recognising my IPG, and the stimulation shut off. I was frazzled by this stage, but glad I was getting somewhere.

Until it wouldn’t pair up. Nothing I tried would work. What is worse, the longer it took, the more my pain was returning and the less I was able to problem solve with a clear head. When I run the cyclic programs overnight, the neurostim is only off for 10 or 20 seconds while it is on for a minute. It leaves a sort of ‘echo’ of stimulation that doesn’t dip into pain, while being more economical with the battery. It also ‘tricks’ my brain, allowing me to get greater function (perceived sensation of stimulation) out of lower settings than if I had it continually on the same continuous setting. Variety is the spice of life, and the brain gets just as tolerant of stimulation as it does of medications. I still have pain with the neurostim, but it is vastly reduced and barely registers (usually sitting  around 4, as opposed to 8 or 9). It’s like a constant static drowning it out. I still have flare ups, but as a whole, the pain is far more stable. Stability is far more important to me than peaks and dips.

The real-life Cruciatus Curse….

This pain intensity that returned was of distant memories of existing in this state, slicing me apart - unmasked and unconcealed. Raw pain that brought tears to my eyes, made me want to cry and scream. Pain in the 9s, fire and ice, red hot metal pokers ramming into my bones, my skin being scratched off and burned in acid. CRPS pain that makes me want to die. I used to have this all the time for many years, invading 3 limbs. These days, with the neurostim, it was just in the one arm, and far easier to manage. I don’t remember life before my arm being stolen by Pain. But I remember crystal clear what having pain free and mobile legs felt like. I had never fully comprehended how much having the neurostim has changed my life until now; never been more thankful for it, nor more desperate for its relief. I never appreciated just how much it has given me, until it was gone.

I was in more pain than I can express, pain that is unrelenting and almost causing me to pass out. I was cold and shivery, my legs and feet turned white and icy. I could barely string a sentence together. Just when you think you have felt your worst pain, there is always a pain that is far worse and make you wish it all to be over. I knew the mechanisms behind it, plain old sensitisation at work. I wasn’t in danger, it was merely a sensation my brain was interpreting differently because it wasn’t being drowned out by white noise. It would only be temporary, until my legs were back online - when my implanted bluetooth IPG will reconnect with my controller app, it would lessen. My pain will never end, but the neurostim made it bearable.  

It was a rather fascinating experience, as I forced myself to view it as such. I was once again in the position of pushing myself to externalise the pain, rather than losing myself and my sanity to it. I had fought way too many battles in this ongoing war on nerve terror to give into such a minor skirmish. Especially one that would have a solution. I knew from past experience that by becoming an observer, whatever was happening to my body, or inside my body was mere perception, sensory data - nothing more. I could not let my emotions amplify it any more than it was. It was hard to contain my terror, to keep my mind from descending into chaos and destruction.

I was in Hell. Anguish. Pain. But it was a different hell to before. I knew this hell, I had survived it many times before. I knew that there was a solution, I just had to hold out one night - what was one night of hell, really? There was a dark humour in the realisation that I was in Hell this time because my legs are bluetooth integrated, and I needed to speak to tech support for my body. I had reinstalled and rebooted and it wasn’t helping. I really am a cyborg - the software update that crashed my system!

Tech support for cyborg dummies….

My particular problem wasn’t one that the local Apple store Genius Bar could solve, but damn it - I wish I had tried! I would have loved to have seen the face of the poor bugger as I explained my particular iOS 12 update problem: “I’ve been waving the magnet over my hip for ages and the bluetooth just isn’t connecting!”. It was lunchtime before I got the call from my neuro nurse specialist (she had been in surgery). Turns out it was an issue that maybe the Genius Bar could have solved; perhaps even I could have solved it had it been for a keyboard, or headphones. Not with Pain screaming in my brain, my legs being hacked off and crushed. I had to go into settings and forget the old device, then retry. So simple was it!

A few swipes, another magnet wave over my hip and my IPG and ipod app were connected! I cranked that bugger up to 90hz and level 13 for a good half hour before dropping the levels, 90hz is my usual “outside” frequency. Usually at home I can manage on 50hz and level 10. I was still flared up, but the relief was glorious. My white noise machine in my spine!

My surreptitious squatter conundrum!

I have been somewhat absent in the virtual world since the beginning of the year. It wasn’t my plan, of course, but life rarely goes as plan. Actually, life has a way of not just surprising me, but outright astounding me - not to mention everyone around me too. Turns out, while I was getting my replacement neurostim surgery and all the dramas in the lead up to, and during; my body had a little squatter hiding away deep within - my little dutch kraker. I was also pregnant! I didn't even know it was possible, and yet.... 

I spent the greater part of the year trying to get my head around it, the marvellously ordinary miracle of growing a new life inside of me. And the sheer terror of being woefully unprepared and perhaps a shade too incompetent to be entrusted with a new little person to keep alive. Honesty, I’ve never really been the maternal, nurturing type who dreamt of marriage and kids from childhood. I wanted to see the world, experiencing the adventures far from the mundane. Though I always had an open mind, for the majority of my adulthood, having a baby was not even an option. I was embattled with Pain, finding my way in my new body and fighting through the workers compensation case. Most of the time just being touched was unbearable, I could barely see beyond the Pain. I was too busy hiding its presence from everyone else.

At 20 weeks....

The big choice to go with the neurostim in the first place nearly 4 years ago was to allow the possibility of pregnancy. Getting older, it seemed, made me not want to lose that chance at normality. Getting so severely sick just six months later, and spending over a year recovering from that threw a spanner in the works and put any baby plans firmly away. When you firmly put something out of your hear, it can ultimately become the reality without even trying. The universe has a sense of humour! But yet, even in all this - the crazy and unconventional - I’m fairly confident I’ll manage in the same way I always do: taking all the craziness as it comes. What other choice do I have? Life is like a box of chocolates.... 

This was no ordinary pregnancy. It is a high risk pregnancy from the get-go for both baby and I. The CRPS; the implanted neurostimulator, for which pregnancy is one of those “not recommended for pregnancy", to "Ah, no idea if it’s safe - can’t test on pregnant women - *shrug* no guarantees!”. Even though my neurosurgeon said they had not had any previous patients who had a full pregnancy with an active neurostim, they didn't anticipate it being much of a problem. I am disabled, which in itself is not the issue others make of it. It wasn't going to make it any easier. I don't even know if I can even anticipate the problems I will need to figure out solutions for just yet. I have ‘difficult to manage’ asthma that doesn’t always respond to treatment and flares for no reason. I hope it behaves itself. My partner and I are over 35, which isn't really old in the scheme of things and the least of my worries. 

A bigger issue was my medication list. It was not going to be possible to come off, or change, any of my medications. It took quite a while to go through the whole medication list, looking at any alternatives and consulting with my other specialists. None of them were able to be changed, it was too risky to meddle with the combination when there was so much at stake. I am certainly not the first woman in this situation. Many women need to continue taking medications while pregnant, but it is far from ideal. The difficulty too, was if one was tapered off, could it be the one that would make the whole jenga block tower completely fall apart. 

My mobility is already quite limited, and it would became more so as the pregnancy progressed. I knew that, but what could I do? Women who have far more issues than I are able to give birth every single day and manage, albeit with good support networks. Mobility itself becomes more limited just in the normal progression of normal pregnancy. It is possible that my asthma could get a lot worse in the third trimester, as all those wonderful natural anti-inflammatories released by pregnancy hormones dip lower. Which is why my pulmonary specialist ("longarts" - lung doctor in dutch) didn't want to change any of my medications, even the newer 'untested in pregnancy' ones. It might not even happen - why always think of the worst? What is the point of catastrophising, dreaming of things that might not even come up. All these things can happen even when I’m not pregnant, though perhaps not the ridiculous hormones and large belly! 

They did a LOT of extra testing throughout my pregnancy, which was far more medical than the vast majority of pregnancies here in the Netherlands. The Netherlands is a country of midwive-assisted home and birthing center deliveries, not the medicalised hospital birth that we are used to back in Australia (or the UK, USA and many other countries). But even for a medicalised pregnancy, I spent most of my third trimester in waiting room seats, 2 or 3 appointments at that hospital a week! I felt like I was already living there. All the testing, all the scans, all the medical care I received - all showed a very healthy baby. It wasn’t, however, an easy pregnancy by any stretch.

Pain not always the biggest problem....

And then at 28 weeks... yikes!!!

While it was a very different pregnancy than usual, I can’t say that it is all the more difficult than anyone else's because I have Pain. Pregnancy, by definition IS difficult: you are literally growing a whole new human being inside your body, one that must not only displace and squish your internal organs to accommodate it, using and taking from your power and energy reserves; then for it to somehow depart and crash its way out from the confines of your body after it has sapped all that it needs. One could call it the best kind of parasite. On the good side, I was fortunate to not have had morning sickness. Which was a good thing - I hate throwing up! I didn't even know I was pregnant for the entire first trimester. I got the shock of my life to see an actual baby floating around inside during my first scan. 

During a sizing scan around 28 weeks however, they found I had way too much amniotic fluid, called “Polyhydramnios”. During this period, I had ballooned from a respectable pregnant lady to the size of three houses and was struggling to actually fit into my tiny dutch kitchen and bathroom. This diagnosis was quite alarming, a frightening period for us. Having either too much, or too little amniotic fluid can be a symptom of a whole host of scary things. Things that were of my nightmares. The unknowables of my long medication list and the neurostim (or age, let’s be honest). That it could be my fault... the guilt I felt during this time was immense; hating that I could have put this tiny little person at risk because I was defective. I thought I had left those emotions far behind, but they emerge out when I least expect. That self-blame and self-hatred of having CRPS.

Turned out, I had been gifted with gestational diabetes. This may be something huge and scary for other women, but for me it was the biggest relief. Though a somewhat surprising occurrence, as I had already been through the joys of a fasting glucose tolerance test and passed. Hormones are funny things though, and the universe found it so amusing  the first time around that it wanted to give me another crack at it! And, so this fasting glucose tolerance test was a failure, something I knew already as I lay there on the paper-sheeted bed wanting to die in a pool of my own vomit! Often with gestational diabetes, being careful with diet and taking a brisk walk is enough to keep the glucose levels under control. With me, and the other lucky ones, the diabetes proved too unstable without insulin. I ended up needing to inject insulin 4x a day, before meals and bed, for the rest of the pregnancy. Injecting myself was far less difficult than it sounds, or even as I expected it to be. To be honest, by this point I hardly cared. Without insulin, I couldn't really eat anything. Outside of the diabetes I got some dizziness, weird sleep patterns (and dreams!) and lots of peeing, but those are normal symptoms that come by normal pregnancies. And the swollen feet and ankles... like CRPS, but not!

I do have more pain, even now. Normal people pregnancy pain, normal pain from walking funny because I have extra weight all concentrated on my front. Normal pain from my fluid-filled pregnancy ballooning swollen feet! And the inescapable: my normal CRPS pain in my legs and arm all turned up a few notches. Thank god I have that newer high frequency neurostim IPG! I think without it, I would have had a far more difficult time during my pregnancy, with the suicidal pain like I had before. Maybe more has changed in me than just having the SCS and time. When you survive what was the worst pain, what is the pain that comes after? When so much is at stake and so much to gain?

I knew that my experience: how I chose to process the pain could cause more stress on the baby and me, which is not healthy for either of us. My insomnia from Pain too, nearly drove me into the dark place. But pain that is Pain cannot be simply ignored, nor medicated away. The conundrum. It was also hard to ignore the upcoming risk of pregnancy and delivery (whichever way it happens) could cause further spreading of CRPS into new sites. I might be cold and pragmatic about it all, but I'm not completely divorced from my emotions and fears. The ever present catch-22. At the time I cannot afford to have an asthma exacerbation, it is it the time where I am most at risk. Keeping active is even more important for someone like me, but also all the more difficult when I have more weight to carry....

Nonetheless, I found an excellent physio. I often find that all types of manual therapists are very much a luck of the draw. Sometimes I just happen to find the absolute best for a particular situation or time by the stars and fortune (or hunches!). I think most are doing their best, but some rely upon outdated models with their biomedical limitations which prove to be ineffective and unproductive for pain. And for me personally, I was way too exhausted to even fight to get heard. I need flexibility; an ability to think outside the box to find unconventional solutions. I need someone who is willing to learn with me, to guide, but also who can brainstorm fun and quirky solutions with me. Someone with a sense of humour too, is vital! And that someone was a bubbly, enthusiastic girl named Sophie, who became my invaluable ally, and someone to whom I shall return to post-pregnancy.

So yes, it is a very complex and complicated pregnancy! But you know what? Making and building a tiny new person IS a complex and complicated business. But it is also the most supremely normal and natural thing I have ever done in my whole life. For all the weird, wonderful and downright abnormal things I’ve had going on. Internally, in the micro and macro worlds, past and present; this... well, this is something I will gladly experience. I have always wanted to live the most out of life, to gather the most experiences as I could in my short time on this planet. This is extraordinary - I've felt more normal than I have for most of my life. Even in the pregnancy-related oddities were still wondrous in their normality to experience. On to this new and grand adventure! 

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

  

The unfounded fears of invalidity...

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

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

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. 

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.

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. 

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. 

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. 

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. 

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! 

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? 

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!  

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.

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! 

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.  

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...

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!