Wednesday, January 9, 2019

A new book = a new beginning

I am currently hanging out in the jungles of Costa Rica doing my best to keep my mind focused on being well.  Part of that journey to wellness is I believe in the sharing of the journey.  After 15+ years of living with and studying Fibro, it is in my heart to put the knowledge I have attained into a book.  I have been tossing the idea around for a few years, last night I finally began putting my thoughts on paper.  As to the how and the when of the publication of this particular part of my life, I am playing it by ear, but I offer here to you the first chapter.  Raw - unedited and about as authentically me as it can get.  You who know me often tell me you can hear my voice when you read... I hope sincerely that you cannot also hear the tears.  This will not be easy, as it will dredge up some serious emotional shit but here it goes... Truth - My Synchromystic Healing Journey.

At the moment I am struggling with loneliness, odd given how often I have asked for, prayed for the time and space to reignite my love affair with the written word.  Life though never quite turns out exactly as you think, unless of course you are an absolute master at manifesting your own reality and that is, of course, a whole other topic for another time.  Back to being lonely, and how that all came about.  I have this thing, this medical challenge called Fibromyalgia.  I think maybe if it was only that, it might not be so bad (though that alone is enough to challenge any persons sanity), but when you add in the Myofacial Pain Syndrome, the multiple herniated discs, compressed discs and pinched nerves, my health, and the managing of it has inevitably become a full time job.  My body is decidedly angry in the winter (I am Canadian) and so with the assistance of my supportive husband, with (more than) a few sacrifices behind us, I have been able to come to Costa Rica to wait out the winter months.  He was here with me, briefly, but he has had to go back as bills still need paying.  I can’t legally work here so he is the unfortunate soul who is currently stuck with supporting us both and suffering through the winter months.  I suppose given his current situation  I shouldn’t be whining about being lonely when I have taken up residence in one of the most beautiful places on the planet.  Yet here I sit, fighting back tears and desperately trying to slap away the depression that lingers just on the edges of my consciousness; taunting, teasing, a constant reminder to me that it is always there waiting for me to slip and fall.  As a patient you get told that it’s just another part of the ‘dis-ease’, the condition, the syndrome…  You are encouraged to learn to live with it, to manage it.  Of course depending on the doctor, you will either have your pain treated as a primary concern and your depression secondary, or vice versa. It is an often pondered question when it comes to Fibro and depression, what came first, the chicken or the egg.  A philosophical debate that we can return to later, one doctors for some reason love to argue over.  But to the patients that fight like hell every day just to survive until tomorrow, the real question is not what causes what (since we now know that PTSD causes both)but rather how do we stop it from destroying our lives.  That is the question that drove me to make so many changes in my life that I am unrecognizable to those who have known me in the distant past. It’s the question that drove me to dedicate years (15 ish I think) of my life to studying Fibro and seeking out a healing program that would work for me.  It was the answer, the convoluted, ever changing, always something new to learn answer that drove me to leave my country behind and ensconce myself in the hills of a foreign land to devote an excess of time and energy on the healing and full on recovery of me. And so here I sit, alone, writing to you in a desperate attempt to distract myself, because being so far away from my friends and family is simply too painful to dwell on. 

 I only share this info by way of explanation, I neither need, nor want your sympathy.  While understanding and the occasional encouraging word is always appreciated, I have learned over the years that sympathy just doesn’t seem to be of any use in the battle against chronic pain.  We who live with pain daily don’t need people to tell us how sorry they are that we suffer, no, what we need people to tell us is how to make the suffering end.  We need solutions, and even though we often tire of remedies being tossed at us relentlessly by well-meaning friends, it is only because we have heard many of them told to us so many times before.  It’s not your fault, we know that, and despite our seemingly ungrateful rough response please understand that we’re not mad at you.  We’re mad at the pain, mad at the exhaustion, mad at the stupidity of not being able to walk from one end of the room to other on Monday and being able to go for a long hike in the woods on Tuesday.  We only seem ungrateful, in our heart of hearts, we see you caring enough to spend your free time seeking out answers to our pain.  We see your active compassion and your willingness to be more than an observer of our angst.  We cherish you for it and though we don’t always have the energy or patience to say it, it means ever so much more to us than the sweetly spoken platitudes of those others who pretend that thoughts and prayers are enough.

And who is we??? And who am I to speak for others who suffer from the same condition?  Who am I in fact to even suggest that I know what’s in the hearts of other chronic pain patients?  Of course, after years of studying the disease, one could assume that I have amassed a vast amount of knowledge on the commonalities of those battling chronic pain. One would be wrong, oh so very wrong… the only commonality that I have discovered to be an absolute truth is that everybody’s body is unique and that with each individual patient originates a distinctive set of symptoms caused by an exceptionally personal life’s journey.   As such, each patient requires an individually structured healing regime that is contoured to their specific needs.   I should therefore take all of those ‘we’s’ out of there and replace them with  ‘I’s’ but at the moment that seems to be too much effort and who knows, maybe somewhere out there, there is another who thinks as I do and they will, for a brief moment feel, as if they are not alone in their misery.

I am not exactly sure at this point in my life how long I have had this condition, although I remember being a sickly child who often struggled with chronic illness at the onset of winter, I don’t remember suffering from pain much (do growing pains that keep you up all night count?) before my teens.  Pain however was already a huge part of my life, not directly, but rather through the shared of experience of living with a mother who suffered herself from chronic pain.

I remember it so clearly, like it was yesterday, though it happened 33 yrs ago… I was in my room, sleeping, and my brother was downstairs doing whatever it is teenage boys did in those days.  The incessant knocking at the door woke me, and whispered voices soon caught my attention.  I snuck to the top of the stairs, knowing full well that I shouldn’t be up but unable to resist when my curiosity was peaked.  There at the front door of my safe haven, my childhood home, stood a man in uniform, quietly, yet urgently conversing with my brother.  You know… I always thought this happened when I was 10 but given that my brother is 10 years older than me, how could that be??? He was only a teenager at the time, old enough to drive but not yet living on his own.  Sigh… remember it like it was yesterday do I??? Well then, I never was very good with numbers and such so I no doubt have the age wrong but the sight of a fully geared up firefighter, the sounds of panicked whispering, and the smell of fear in the air that night, I will likely remember until the day I die. It was the firefighter who noticed me first, a friend of my dad’s though I have no idea which one, and it was only mere seconds after his first initial glance towards me that I was bundled up and unceremoniously dumped into the arms of my neighbor.  Her eldest daughter was called , I was ushered upstairs, reluctantly allowing myself to be dragged away as the adults again began to speak in muted tones.  I still resent them their secrets that night, 33+ years later, I wish they had it within them to be more for the coming.  After all, it’s not like it wasn’t obvious that something was wrong, and since both my parents were absent and overdue at coming home, it naturally made sense that something was wrong with them.  Of course the little snippets I heard didn’t help, a ‘car accident here’, a ‘we don’t know how bad’ there and an unforgettable ‘they had to use the jaws of life’.  The average child might not be alarmed at those words, but the child of a local volunteer firefighter who had made it a point to not shelter his adopted daughter from the realities of the world knew exactly what that meant.  Somebody had been trapped in a car and the twisted metal had to be carefully cut away so that the person could be extracted.  Surely my child’s mind didn’t think in such such terms, in fact the only thing I was probably thinking at the time was… this is bad… this is really, really bad.

They kept me occupied that night, the oldest daughter telling us an elaborate tale of little red riding hood and big bad wolf.  There was a motorcycle riding granny I recall, or was it the wolf who wore leather?  Regardless of the details, I remember the story taking us on a whirlwind adventure and dragging on late into the night until exhaustion got the best of all of us.

The morning came and life as I knew it was over…

No they didn’t die, though in mom’s case perhaps it had been better if she had…

Dad was thrown free in the roll over due to his refusal to wear a seat belt, which after having heard a description of the car (years later when it was deemed I could handle it) was rabbit foot round your neck and horseshoe up your butt level kind of luck.   

The entire drivers side was obliterated as the car had flown into a giant tree trunk, driver side first.   Dad suffered some broken ribs and some bruises.  Mom however, safely secured by her belt, was trapped, her left side crushed by the twisted metal and wood that were the result of car meeting tree at much too rapid a pace.  Not sure I’ve met many people who can say they know someone who broke the left side of their body, and I’m not sure that’s even a fair description, though it is how I remember one of the doctors describing it as at some later date, no doubt before/after one of her multiple surgeries.  I do remember quite clearly years of recovery, years of my mother being in and out of hospital.   I remember the wheel chairs, the walkers, the ramps being installed in our home to make it accessible.  I remember family and friends being willing to help and support, and mom, at first at least, seemingly driven to fight for her health.  I remember a diagnosis of a rare medical condition that doctors at the time didn’t even believe in (Fibromyalgia).  I remember her spending hours at the local library, and on the phone to medical Universities trying to learn as much as she could about the disease that science said didn’t exist.  I remember her desperately trying to explain to all of us what she was going through.  I remember the help dwindling as her recovery stretched out and her dependency on pain medications became obvious.  I remember how her drinking (something that had always been a small issue) suddenly becoming a distasteful topic discussed by close family members behind closed doors. Finally I remember her giving up… and I remember not long after, giving up myself on the idea of ever again having a normal home life. 

The obvious problem of course being the effects of mixing alcohol and narcotic pain medications.   If you are not sure how that works well… imagine taking a cute little cuddly koala, trapping it in a confined space, then poking it relentlessly with a sharp stick.  Eventually, in not too long a time, that cute little koala would become a snarling, slashing wild animal willing to do anything to escape it’s torment.   Mom had never really been that sweet of a drunk to begin with, and I have several traumatic childhood memories that illustrate that truth but we aren’t here for that.  We’re here to discuss how chronic pain and the medications used to treat it can affect the patient and their families.  We’re here because my memories have brought us here, because part of my own personal healing journey is working through those memories and figuring out how to finally let all that pain go.  Because the obvious problem was the drinking and the drugs, not the fact that though she fought like hell to study, learn, and then to explain her medical challenges, we were blind, deaf and dumb to her resourcefulness, her courage and ultimately here cries for help. 

Over the years I have written some comedic bits on mom’s adventures with alcohol. I have also written some scathing references to her shifting moods, her changes in personality and her skill at doing enough psychological damage in one conversation as to last a lifetime.  I have shared the truth of her with many, how when she was sober she could be sweet, kind and compassionate.  How she was an intellectual who encouraged me early on to be a questioner of truths and explorer of this big beautiful world.  I am not sure however, if I have ever written so openly about our failure as a family to understand what it is like to be in constant pain every single second, of every single minute of one’s life.  Of course how could we understand? Really, when you stop to think about it, how can one who has never experienced something like that possibly wrap their head and heart around the concept of always hurting.   I wondered early on, after I myself was diagnosed, back when I still believed in silly things like universal punishment, was my own experience with the disease my punishment for not being more considerate of my mothers’ plight. Maybe I still wonder, though I know I should know better; if I am writing about it, it is obviously still buried in my subconscious.  In fact the recollection of it caused a brief moment of emotional collapse where I found myself unable to write because I was weeping inconsolably and apologizing to her ghost for the wrongs I did her.  It’s ok now, I am back and reflecting on the fact that we have needs to justify our pain.  Isn’t it just like the human heart to seek to blame a bad experience on something??? To find reason in it, to explain away it’s beingness.  Cause and effect… we are great believers in it are we not?  Y cannot exist unless x has happened.   

Does validating our pain make it more bearable?  If my own suffering and experiences with chronic pain can help others then doesn’t that make it all worthwhile?  How many times have I told people that?  I’ve lost count and I am ashamed to say that though I stopped believing it years ago, I have continued to say it because it is easier to explain than the truth.  So what is the truth? 
The truth is that if I could not dredge up some semblance of purpose for the pain that I have suffered from for years, I would have long ago taken my own life.  I don’t type those words lightly, and I have only recently been willing to openly speak about the suicidal thoughts that go along with chronic pain.   I remember one particular instance when I was on the road with my husband (a truck driver) and unbeknownst to him I spent the entire three days on the road (when awake) wishing I could just die because death would be easier.  Seriously, for three days straight, I sat in the passenger seat of his truck, thinking about, wishing for, sometimes even mentally begging for death.  I never told him, I never admitted how much I was suffering, I never asked him for help.  I just sat there, day after day, watching the road in front of me, silently contemplating how much I wanted it to just be over.  No thought to him really or how it would affect him, no thought of my treasured girls and how it would impact their lives, just ‘please let me die’ playing on repeat in my head like a broken record.  I don’t even have the decency to be ashamed of it.  I am not sure that I should be ashamed of it.  When your body feels like is in at constant war with itself, though I know now it is not, it causes torment to one’s person that goes well beyond the mere physical experience.  How does one even begin to describe the myriad of emotions that come along with having a condition that the doctors and society still don’t fully understand.  I hope in the process of this sharing that I can shed some light on the experiences of countless others out there suffering from chronic pain.  Certainly I cannot speak for them, and my own personal perception of things may be vastly different than that of another.  It is my hope, that if I am perfectly open and honest about the things that Fibromyalgia has done to destroy my sense of self-worth and purpose, if I am authentic in my sharing of the repercussions that chronic pain has had on the financial, emotional and physical security of myself and my family, then maybe, just maybe, people will come to understand the dangers and severity of chronic pain and begin to take seriously the heart-wrenching plight of warriors around the world trying to eek out an existence while wishing they didn’t exist at all.

What does it feel like??? That’s the question I get the most… Even that is something I struggle to describe.  For those who have experienced time in training, in the gym or on the field, you will know the weak watery feeling of over used muscles that comes only minutes after you stop whatever strenuous activity you are doing.  You also know the achy, bone deep weariness that leads to an early rest and the necessary slow encouragement of angry locked up muscles to allow minimal movement the morning after.  That’s just a normal day for me.  That’s what my every day, without a flare, or injury or undue emotional stress is like.  That is why I practice yoga, why I have studied meditation for pain management, why I am (within reason) exceptionally careful of my diet and am diligent with my supplements.   All these things I do because I know that they help my every day be not quite as bad as a combination between the minutes and morning after a hard day at the gym. 

Of course that’s just the muscles…

Do you know that sickly, dehydrated state that comes with having had a few too many the night before, the sensitivity to sound and light, mixed in with a little confusion of where you are and how you got there?  Yeah… that’s a pretty normal thing for me as well, although I don’t get the enjoyment of having the alcohol (yes occasionally I do drink but I pay for it for days) because my body and alcohol do NOT get along very well at all.   They call the confusion part Fibro fog, a quaint little nickname meant to take the fear out of not being able to remember the PIN number to the bank card you just used 15 minutes ago at the store at the other end of the mall.  There’s not much science being done by way of figuring out where Fibro fog comes from, but I can attest to the fact (from firsthand experience) that sleep deprivation caused by untreated pain can result in loss of memory so severe that doctors consider early onset Alzheimer’s. That little adventure is something we can dive into at a later date, the point is,  I believe that Fibro fog is the direct result of the nervous system being so completely overwhelmed that it can no longer process information properly.  I have often described Fibromyalgia as being in a constant state of fight or flight, where the senses are heightened and the brain is so focussed on survival mode that any extraneous information (like a PIN number or your husbands date of birth) is quickly pushed into the recesses of the brain that are not easily accessed.
As for the dehydration, given that I always have at least one refillable bottle of water with me at all times, and rarely drink coffee, pop, or alcohol, dehydration definitely should NOT be an issue.  Yet many mornings I wake feeling as if my body is lacking the life giving force that is H20.  It took me awhile to figure it out but after several years of confusion over why my body did what it did, I finally realized that it happened after days when I had had processed foods or food otherwise high in unhealthy ingredients like unnecessary preservatives and other fun chemicals.  I also noticed that I would be extremely dehydrated on mornings after I had cleaned the house (before I switched to natural cleaning products) or used harsh chemicals for any reason at my job.   Even the act of dyeing my hair would lead to a rough couple days, though I stubbornly continued to dye my hair for years, only this year opting to chop it all off, let it grow in naturally  and rock the grey that my red hair dye has been hiding.

And of course there is the much ignored yet ever present sensitivity to touch.  I won’t get into this too much at the moment because it warrants a chapter all its own but I want you to consider this; what  must life be like for someone who feels pain when someone brushes their fingers over their skin?  The impact this one symptom alone has on the relationships of couples who find themselves unable to be intimate, or on parents who find themselves unable to hug and comfort a crying child is enough to make most decent people weep.

Along with all of this comes my life long companions, depression and anxiety.  Now it can be said that depression manifests as physical pain when left untreated so again, the question could be asked what comes first.  For me personally, the answer apparently is the pain, as doctors have tried unsuccessfully to treat the depression with medications and counselling without treating the pain and learned through trial and error that the depression goes away naturally once the pain itself is treated.  It is the same with the anxiety, though I have also learned that the anxiety is an integral part of having a condition that stems from an overactive central nervous system.  One simply can’t be on the edge ALL the time (fight or flight) without being on edge all the time.

All of that, just a regular day… a regular day, every day, for years and years and years… Diagnosed in 2004, but suffering symptoms for years prior, this has been my life for over 20 yrs.  Fuck… Three times I have tried to type the next sentence and three times I have erased it because - Fuck… apparently I need to digest that and I’m the one who has been living with it.  I can’t imagine right now what you must be thinking. How the hell does anyone survive living that way without going completely insane (which is not to say that I am, completely sane that is but…) Yeah, I wouldn’t believe it either, in fact I didn’t and that I believe is where we started.  With me acknowledging that I didn’t believe, and accepting that had I not personally experienced it, I might never have believed.  Better people than me then are those who have stumbled onto my life’s path and offered understanding, compassion and support.  Forgiven are those who never understood, who were unable, though they tried, to grasp the severity of this syndrome and what it does to those who suffer from it.
I have thus far only scratched the surface, only given you a glimpse.  I have yet to discuss the reality of a flare, or the truth of the unpredictable nature of Fibro.  I have only alluded to some of the solutions I have found on my journey.   There is so much more to it than what a simple few paragraphs can cover, because Fibro along with its multiple symptoms that change from day to day and patient to patient, has as many different causes.  I mentioned PTSD which is now being studied as one of the main causes to the onset of this debilitating disorder.  Physical trauma can also cause a first flare as in the case of my mother who never healed from an accident that happened years before the pain, the pills and the alcohol finally caught up to her.  There are those who believe that it is hereditary, the result of a dormant gene that is passed down generation to generation, until it is activated by trauma.   Others say it is nothing but a random short circuit in the nervous system brought about by repeated emotional or physical stress. Some, like myself, even believe it might be part of our evolutionary process, and oh my goodness, won’t that be a rabbit hole to dive down at some later date.  The entire topic is so ridiculously complex as to be laughable.  The patients who suffer from it don’t understand it, the doctors simply pretend to understand it and society as a whole struggles to accept that it even exists. 

Yet exist it does…

The grim reality is that there are an estimated 2% of Canadians suffering from Fibromyalgia,  and
globally the number reaches 3-6%. That is roughly 420 Million people who wake up every day of their lives in pain and confusion from a medical mystery that science has yet to solve. A syndrome that science has, to be perfectly honest, shown very little interest in exploring let alone curing.
So there it is, the first ramblings of an unstable lonely mind about the medical condition that inspired a trip to the jungle and awakened a unquenchable thirst for answers and ultimately solutions to a global plague.  Am I cured??? No, certainly not, though there have been times throughout the years when I was half convinced I was.  Is there a cure??? I wholeheartedly believe there is, not because of all the things I have learned over the years with regards to natural medicine and the workings of the human mind and body, but because once, a few years ago, I let myself accept for a brief time that there was no cure.  That  ‘knowledge’ almost killed me. Loss of hope robs us of the ability to continue to fight and so I continue to believe.  Simply put… I believe solely because I can’t face the dark reality of living the rest of my life (possibly another 40-50 years - I am 43) in pain, every minute, of every day, until the day I die.  Could you?

Niki Norlock, author of Truth - My Synchromystic Journey

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