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.
I couldn't walk because of pain in the beginning, but now I have atrophied muscle tissue, bone changes and displaced foot, not to mention reduced circulation, cold limbs and slower healing of minor wounds. Nearly 6 years of CRPS in my legs means there are already permanent changes. Not to mention what's gone on in my arm. Pain isn't the only problem, and to have an absence of said pain does not guarantee happiness! Just because a cure won't be for me doesn't mean it wouldn't be for another person. The problem is that there isn't a lot of funding going into this uncommon and unusual disease. It isn't profitable enough, any successes gained do not work effectively in enough of the CRPS population to be viable (that's how scientific research goes, unfortunately - majority and funding rules!) The only possible way I can contribute to very slim body of knowledge about CRPS is by doing everything in my power to arrest my own spread: testing out boundaries of possibilities as far as I can with the knowledge I have. Knowing with certainty that immobility is an enemy: pain will be there whatever I do, so better I truly earn it by doing fun and enjoyable things! Seeing if retesting pain neuroscience papers as my own guinea pig experiments can turn up new or novel directions that real research could potentially take; even if these possibilities are only explored in my own head for my own satisfaction. Stuff I've done for years, everyone needs a hobby! But I also need to share it for it to be of any benefit at all.
For 16 lonely years, I've had to lead my own troops without a lot of guidance. It has essentially been most of my adulthood. I have however, been exceedingly fortunate in the people I have met who have helped, guided and supported me at different times. With all these opportunities I have been given, to not grasp them firmly and try with all my heart would be illogical. Add in some divine serendipity, old fashioned luck and pig-headed stubbornness - that's where you'll find me babbling away to anyone who'll listen! The understanding of CRPS back then was far less than today, and the internet wasn't as accessible as it is now. Even today, most doctors don't know much beyond the name (and PAIN) of CRPS. But I no longer feel alone. I am not fighting several skirmishes on several fronts (pain+CRPS+disability+inability to use my hand+workers comp+employer+depression+mobility+insomnia+educational bodies and so on), which makes life a hell of a lot easier!
However, for the past several months, I've been rather anxious about my increasing sensitivity and symptoms. I've been scared the CRPS has spread into my back around the incision and IPG pocket sites, as well as in my spine itself. Scared that all the sleepless nights and ineffective strong pain meds combined with ice cold extremities and crushing bone pain pointed to a general and irreversible worsening of CRPS. Terrified the neurostim had run its course in less than 3 years. When I made the decision to go ahead with the SCS, I had banked on having more time. I have been pushing my pain and body to breaking point, the point where I go beyond my usual compulsive swearing into uncontrolled screaming in my head; my very short fuse is even shorter.
Notwithstanding, I refuse to make excuses to not do things I may enjoy: pain is simply not a good enough excuse anymore! My sketching nights need damn good excuses for me to miss them: weather, pain or discomfort are not worthy excuses. It takes having either visitors or better social events to go to, for me to miss out on sketching nights! Pain cannot become an excuse, otherwise I will never get anything done. Besides, look at all the things I have done while in extraordinary pain: the travelling, the dancing, the paintings. Why should this time be any different?
BPS, or BioPsychoSocial model of pain; aka my Bossy Persistent Survivor mode of attack; aka that Brutaal Pain-in-the-arse Seeker method to sanity...
Intriguingly, these past few months have had some 9/10s pain levels, but my emotional devastation score (on scale of 0-10, 0 being 'fanfriggintastic' to 10 being 'I fear/hate/feel overpowered/depressed/suicidal about my pain') I would probably put my level at 3, maybe 4 after sleepless nights. I'm pissed off by it, find it irritating beyond belief, I'm cranky from lack of sleep and wish it would "SHUT THE FUCK UP!!!" But CRPS flare-up pain isn't devastating for me any more. It's happened before, no big deal. Ride out the storm....
For people who understand BPS model of pain (biopsychosocial), this is not unusual. Pain is such a complex human experience that cannot be compared. However, I can with great accuracy tell what my emotional state is like from my perceived pain levels. And when my pain levels go higher for weeks, my first port of call is: "How is my mental health? How do I feel right now emotionally? Am I sleeping? How socially connected am I? Am I isolating myself in any way? Why am I pulling myself back? Only once those are checked off my list will I go into biomedical causes for my pain in that moment. Usually it is that I overdid something, behaved like I wasn't impaired or limited in any way. Not to forget the inescapability of age. This happens quite often now!
I am a perfectionist, I am also rather regimented and analytical in how I do some things. I can be both supremely disciplined and sloppily lazy, but in many ways I am the former. I go through this checklist in my head many times a week, because I know I cannot trust my body and perceptions. I refuse to fear pain, and I am not afraid to be bossy to get what I need. Direct honesty is something I cannot live without. Not speaking my own truth and how I feel, causes more pain in my body. Speaking with people whom I feel are not being honest with me also causes me physical discomfort. This isn't some made up stuff to engender excuses, pity parties or sympathy, but a very real thing.
CRPS is as subtle as a sledgehammer crashing through your body, and holding tension or unexpressed emotions internally will always result in more frequent and unpleasant dystonia, as well as other physiological and vascular effects beyond my control. I cannot lie to myself any more, pretend stuff is ok when it's not. I also cannot tolerate being or feeling disrespected. I don't mean in some bullshit macho manner. Rather, if I feel I am being treated condescendingly, or treated to be of less value because I am disabled, I get really very annoyed. That's when I want to get all Jean Grey on the world, and destroy shit by telekinesis!
This isn't about my inflated ego, but I respect others and believe I deserve respect in return. People don't need to respect me when I'm being an arsehole. However, anyone in official settings who treats me like some sort of idiot because I am disabled will often be in for a figurative uppercut and likely my reprimanding official tone. Perhaps even a little vengeance - attitude adjustment - though these days I chose my external battles carefully. I have been in non-stop pain for over 16 years: that is 6,000 or so days. Every single one of them I have battled it for 24 hours a day with no respite. I have pushed myself hard for many years to get as much function as I could out of limbs that I was gradually losing. I fought against my own body every day to keep the containment lines. I don't need congratulations, or to be some inspiration porn poster child bullshit; but my attitude, actions and achievements should be worthy of the normal everyday 'getting on with shit' respect. And there is much more to me than just pain and disability.
Converting pointless pain into an efficient fuel, pushing beyond my own beliefs and limitations...
I have also kept my body moving in novel ways this year. I haven't been able to hit the distances of before, but I still swim once a week and am looking to increase my swim sessions and fitness. The sketching and painting has really been the most exciting form of physical therapy I have ever done. I could not have done better! More than therapy, it is a passion. I feel the same zeal for living as I did while dancing. Sketching musicians is merely my disabled form of dance! I have discovered so much from doing this. It has become my joie de vivre, my reason for being. After 5 years of social isolation, life-threatening illness, multiple surgeries and rehabilitation; I now have social circles that had nothing to do with being sick. I am no longer a prisoner at home, but someone who is able to take life by the wheel and drive. More than all of these positive things: I am happy with the person I am, who I have become. This is perhaps the most valuable thing I have gained this year.
However, it doesn't explain my stab-my-eye-out-with-a-fork pain; spastic limbs on fire and frozen at the same time; inability to sleep more than 4 hours for more than 3 months. The icy cold limbs that are not playing fair; cramping, tremors and dystonia which shouts out that which I had hoped to keep secret. Small scratches, blisters or minor wounds that don't heal quickly. This is more than just a flare up, but a downward trend. It's rather annoying! Additionally, I'm rather unimpressed with my body's refusal to bow down to current scientific knowledge. How can I preach the BPS gospel when my body doesn't play fair?
But it does bring up an intriguing idea. While in as much pain as I am, without embellishment or exaggeration, I still seem to be able to leave the house at least 2 or 3 times a week. This is rather positive in itself, something I haven't managed so well during other times of instability. I am able to participate in social occasions, and push through to do activities I value. Is it all down to my good psychosocial scores, that overpower/override my pain perception? Is that what it is keeping me afloat when my tanks are empty, and keeping my will to live when previous times I've wanted to give up and let it take me? What is it about my coping skills that have become an integral part of who I am right now? Because previous periods of instability have hit me much harder psychologically than this time. I am genuinely happier today than for much of my life, and I seem to be rather happier than others who do not have pain or other chronic conditions. Why is that?
Could I actually be so self-deluded and in denial that I have no idea of my own emotions, like that revalidatie doctor tried to convince me? I really don't think so. But one cannot fully discount medical advice, even if I have little respect for them personally. Sometimes arseholes can have a relevant point, even if they don't really know what they are talking about. However, there is so much I am passionate about right now and life is still as full of wonder as during those highlights in my life. Severe pain is a major annoyance, but not something making me wish my life would end anymore. Pain hasn't become less severe, or less unpleasant, only my emotional connection to it is reduced. It hasn't really stopped me from living. Though it does get in the way of everything I love and everything I want to do, it merely requires figuring out hack solutions, or relinquishing the old and finding something new. Pain's strength isn't as powerful as my own will and sense of self anymore. In fact, it seems significantly minor on my drama scale, and laughter crashes any drama to the floor!
I remember hearing something about basic training in the military being about psychologically breaking an individual down to their basic elements, pushing them to their breaking point - past their limits - and seeing what's left of them to bounce back. Who will crumble and who will still stand tall? When shit hits the fans, you really need to know who will be able to be relied upon. Pain has brought me to my knees, disfigured me, destroyed all the best elements of who I was before, and forced me to confront a self-image I never wanted to see. Forced me to stand up again, when all I wanted to do was crawl home and die. The deep sense of shame I used to feel about being defective is long gone, I've lost my embarrassment about being disabled, and in my own reflection. Why should I be ashamed about being human? My body is a battlefield, my wing is broken, but I figured out how to fly again. And who needs legs when you're soaring in the sky?