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 I was feeling powerless again; overwhelmed, anti-social and withdrawn.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.
So with this new epiphany, I dealt with that in the same way as I dealt with it in the past. I jumped right into something that was both terrifying and exhilarating. Outside the box, I broke all my rules and stared down my own fears. I put myself out there; dived into a whole new experience with people I didn't know. And just like my other magical moments of divine inspiration, it is incredibly primal in its immense joy; from following on the path it whispered to me, I realised that it doesn't matter. My spiritual path - that which gives meaning to it all. My purpose in life.
For quite some time, I have been withdrawn from everywhere. Only interacting with a small circle of trust. I barely had words to explain it to myself, let alone anyone else. I wanted to update this blog, but I could barely cope with emails from family, let alone any form of social media. Perhaps if I had come here sooner; my safe world of my own soul, of my own creation; I may have figured it out sooner. Who knows? I certainly I wouldn't have such a crazy task to acomplish right now - how the hell to sum up the entirety of 3 years of insanity? I think I kept on the idea that I would document the process of getting the neurostimulator in nice and neat sequential posts. Then life got in the way and... here we are, a whole year later... than the year I took to get to the previous... YES, I am a slackarse cyborg!
Cybernetically altered and improved - Jane 2.0
I now have implanted technology, a spinal cord stimulator (SCS) or neurostimulator: electrodes wired up to my spine, an IPG - implanted pulse generator, which essentially is a big arse battery implanted in my big arse upper buttock! (I must be careful saying that in public!) and needing and can turn myself off and on (now now, I do mean my legs!) with a magnet or a remote controller to change the stimulation intensity (I need to get my head out of the gutter tonight! Hyped up late at night mania?) that I wave over my hip. Sometimes it gets warm under my skin when I have it on my usual high settings for too long, and feels as though I have a small phone tucked into a back pocket, only it's inside my actual body. It's really cool! And freaky. Insane really. Quite often it is also terribly embarrassing, sometimes ridiculously so; though always unexpected and unpredictable, it really has changed my life.
However, I get more anxious in social settings these days, especially with new people. Explaining gets tiring, I don't want pity but I also don't want to be dishonest. Pain is a tricky subject. Peoples' own fears sometimes get in the way of understanding, which is only natural, I suppose. I forget that my experience is unlike others' perception of Pain, not everyone has made friends with their Pain. Still, I care less about what other people might think when they see me because those that I do have in my life know what I've been through and how much my life has improved. That doesn't mean it is easy to put myself out there, but I want to take the risks. I am pushing myself to do more and challenge myself to get out of this grey place I've been for quite some time. It's now time for a new beginning, away from being a medical patient - the strange experiment of being the unknown. The freak of nature. It was eye-opening, hospitals in general and a foreign one at that. Well, perhaps not so foreign anymore. I spoke dutch the entire time, even in the most difficult moments. Maybe I truly am local in the most intimate way.
But even in the more challenging times over the past 2 and a half years - I would not change it for the world it has returned to me! I probably could not have coped with everything that went on, if my Pain had been as severe as it was before. Of the entire full space of my four limbs, a total of 50% of it is CRPS Pain. Yes, I really can quantify this. I've been sketching a lot of people lately so proportions are really in my head! Nerve pain, all the time, no break, only fluctuations. With the neurostim, 2/3 of that is quite manageable, around 5 on the pain scale. The arm hovers around 8, the legs were too before: five is fantastic! Though the neurostim has its quirks, it has some... side-effects. Nothing untoward, just... quirky! It works well most of the time anyway. It does not and cannot remove the Pain; nor is it a cure because CRPS doesn't play by the normal rules. The right arm is as it is, still just as problematic. The Pain there will never leave, but I have pretty much beaten it into submission! It can hurt as much as it wants but I don't hear it! I won't hear its excuses now after 16 years. It really is a whining teenager who needs a job! Good thing I found it one! I make myself use it through the Pain, giving it the fine motor skills tasks while giving lefty the heavy lifting jobs. It is more bilateral, more balanced and in the long run, will help take the pressure off lefty and hopefully keep that last lonely limb CRPS-free!
I went through a hell of a lot in order to get my spinal cord stimulator, it took about 18 months, from the first recommendation from my pain specialist in Australia back in 2013. That is including the time it took for me to actually decide to go ahead with it, and then find a good surgeon who does it in this country. It is still rather uncommon, and I had to travel far out of my city for it. I will write about the whole experience; information that I was really hard pressed to find while I was making my decision to go ahead myself. I found many stories about things not working out, or scare stories. It is a bit unbalanced. You see, those for whom the neurostim worked, they aren't sitting online complaining about it. They are out there living again!
I really had to figure it out on faith in the universe and hoping for the best that getting the neurostim was the way forward for me. I trusted my own decision, then let it go. I was incredibly lucky every step of the way, but it certainly wasn't easy. You can never have unrealistic expectations. My decision was informed to the highest degree, so even if it didn't work out, I would have been ok with it. At least, I knew I would figure it out eventually. It will probably be a series of blog posts (and *hopefully* *probably* *I promise to at least try...* to make them regularly) at the very least, shorter posts are probably easier in order to keep a schedule of writing.
To be honest, getting the surgeries and the 6 month recovery was easy pickings compared to what went on next. And it wasn't even related to CRPS or the SCS at all! I really wish life could be simple! It really has been a few long, invasive and somewhat dehumanising experience of the past few years while at the same time proving the most primal, most essentialy human things in us all. It taught me so much, about myself and who I truly am.
When life king-hits you and knocks you out...
When life king-hits you and knocks you out...
When you spend quite a bit of time (as in, months) in a hospital or any type of rehabilitation/revalidatie as an inpatient, you get a little institutionalised. Privacy goes away, dignity too. But I am no fool, and I suffer them even less. I can understand in hospital it is reasonable to provide care, assistance and to be certain I would not injure myself while under their care. But I am a huge pain-in-the-arse patient - I really need to be independent as much as I can be. Even more so when other aspects of my life are beyond my control. Unlike the kind offers of assistance from general public (no offence) nurses are more likely to be somewhat more "OH&S compliant", both for them and me. Nonetheless, it really isn't necessary for me. I am not afraid to ask for help when I truly need it, but most of the time it really isn't necessary.
In the early weeks of my sudden and unexpected asthma exacerbation, I had no control over anything and there was nothing I could do about it. I felt utterly powerless. But I told myself it would just be temporary, a few days in hospital, then home. It didn't work out that way. All up over 5 months, I spent 31 days in a pulmonary ward of a hospital. But those first 2 weeks were pretty bad. It is the most life-threatening situation of my life. Pain was never going to take my life unless I gave into it, but this could have easily killed me. It killed my father when he wasn't even 30 years old. But I was in a hospital, which certainly rates your chances of survival higher. I felt more distressed about the utter powerlessness of not being able to speak, to keep my own faculties. Mortified at the terror of being the spectacle. I was in a nightmare, lying on the bed in one of those horrible TV scenes where it all goes to shit. You know the scene: people bustling about the patient, curtains pulled sharply around and squeaky wheeled apparatuses are rushed in. All those doctor staring down at me, poking me with stuff; talking about me as though I wasn't even there. It is a confusing bundle of flashes of faces and sound. It wasn't all bad though. I remember just how wonderful those nurses were, fluttering around like butterflies and holding my hand. It made me think of my Mum, so far away. My Mum the nurse, whose care and dedication to her calling I've grown up with, working with those whose disabilities are the ones that society doesn't want to know about. She is the reason I am so strong, she instilled a strong independence in me, the fighter.
Maybe it was that lovely hand-holding nurse I remember, or the nightshift nurse who bought me ice cream late at night while I was still awake. Or the lovely young doctor who took the time to explain to my partner what was going on. In the confusion and terror, I felt a very profound truth that I would be ok, that I was ok. That nothing would happen to me. There was a tranquility, a peace I found once I could actually express myself again. However, none of this made me feel any better about being the spectacle. They say that more people fear public speaking than death; public speaking in the old (non-disabled) days was no biggie for me - I loved it, in fact. Is being "the spectacle" to me what public speaking is to everyone else? Turns out, sheer embarrassment isn't my worst fear. Good thing too, I embarrass myself daily!
I can solve most of my own problems, I've certainly figured out some cool crip hacks and workarounds that make me look like a spazzy weirdo power-shorting-out robot. My mum calls it "st vitus' dance"! I can't really control it, but I'm used to the spaz, I'm balanced. Mostly anyway. Despite all that - I can still do my own stuff and some downright nifty shit too! I would never have learned any of that had I accepted assistance for every difficulty. Saving myself rather than waiting to be saved. This is who I am, stubborn, determined and a pain-in-the-arse perfectionist. I can do anything if I'm prepared to give it time. Too many people make assumptions about you after spending no time actually speaking with you, but I too, made my own judgements and learned who was listening and not.
The psychiatist came to see me in the second or third week I think, tag-teamed with the social worker; concerned about my mental state after being so unexpectedly and severely ill. It was a little odd, I got the impression they believed I wasn't being honest about my feelings; in denial perhaps. I was friendly but firm in my desire for my own self-determination. I explained that it was important for me to be responsible for my own self-care while a patient; setting up my own nebulisers etc., in my own time schedule. I explained why this was important to me and how it would improve my mental state. If I could control little aspects of my time there, things I am more than capable to do, it would make me feel less powerless. It made a huge difference, I was able to deal. I didn't tell them that it drives me batshit crazy to have to ask for stuff. Luckily, they did listen to me and left me (mostly) to my own devices. It made my time there much more bearable, especially since I was fighting so many battles with my body. I also learned pretty quickly not to give too much information to the general question: "do you have any pain?" in the BP/temperature/medicine check twice or three-times a day. There seemed little point, and I got tired of explaining. They did raise my as-needed pain meds, because tapering large doses of IV prednisolon was incredibly painful with CRPS and muscle cramps. Mind you, for me the psychological effects of tapering was more emotional to deal with. There are far worse things than pain.
Intriguingly, I ended up being the one who often had to explain CRPS itself (how I wish for something common! But CRPS is relatively unusual; in 3 limbs most definitely). I don't mind doing that. If anything, I appreciate being told by doctors that they don't know much about it and are willing to listen. Not only just about my CRPS, but the neurostim too. None of them really had seen them before. Even the pain specialist who came to see me was impressed! I was more than happy to show it off. Who knows what the future will bring, but right now my neurostim is the coolest gadget I have, life was so much harder before I got it.
I am alive; more than alive - I survived - I THRIVED even. It was probably worse for my family and friends than it was for me. I realised that I would always bounce back, Pain is never as bad when your mind knows you're ok. I realised that nothing, not even this, could feel as mentally deavastating as those first few early years with my arm back in the early 00s when I was fighting so many separate battles alone. Unwilling workers compensation doctors; unsupportive university bureaucracy; unfair, and at times, bullying workplaces. Uncompliant everyone in that system, aside from me and my wonderful GP. I constantly felt punished for all my compliance and I fought back as much as I could. But I couldn't fight all the enemies against me on my own. No wonder I travelled to the farthest place I could think of when I could. Even pre-neurostim days were nowhere near as bad as those workers compensation years.
Those years of my own private war hardened me up, made me more confident and certain in my own strength. I have won so many battles that I'm not scared of much. I get cranky at the stupid and superficial stuff, rather than the universe, which I suppose is pretty healthy. I am anxious in social settings, mainly because of other peoples' attitudes and beliefs rather than my own. I do as much as I can and soldier on, try to fumble my way through life just like anyone else. Sure, I make an arse of myself quite often, and I feel a sad nostalgic twinge for the innocent time before CRaPS entered my life. I wish I could be more "whole" and less of a drama for those around me, for it is only for those I love that I wish things could be different. I already know I am strong enough, but it seems unfair for those I love to have to live watching it too.
It was a fascinating experience, defying expectations in sickness and disabledness. It wasn't really the life I had dreamed of, but yet I have so many good things; experiences of kindness and connections to others; that maybe it was. I decided when I was 17 that I would never revisit those depths of despair again. The darkest periods since have never touched the depths of 16 year old me. They were more out of desperation and not having any control. Being in control of my situation; even having some illusion of control, makes anything else more tolerable. That is my truest fear, the boggart in the cupboard.