I had not intended to write a post this week such as the one I have, I had plenty of other topics I wanted to write about, any topic other than the one that was demanding my attention.
The demands of my attention?
The revelation that the strength I know I possess within myself to dig deep and push on regardless of circumstance, may very well be my greatest downfall…. Sadly, a downfall experienced by far too many people I would assume.
From a medical perspective alone, I can’t help but wonder how many people are dismissed and turned away because they don’t allow themselves to look sick enough, complain loudly enough or wince at every pain or uncomfortable sensation felt throughout their body while being poked and prodded by doctors? … No matter how intense their pain or discomfort becomes!
So, what was it that had caused me to ponder the hindrance that the strength within me had clearly become?
Monday morning, I sat to write, the left side of my face strangely numb, tingling and feeling as if it was swollen, like the sensation of a dental anaesthetic wearing off, only this sensation encompassed half of my face and the side of my head.
That left side of my face, dysfunctional! My jaw and mouth only barely cooperative to speak, my eye and all that surrounds it tinged with a heaviness that increased with each movement of my head and the eye itself.
My head on that side emitting intense pain, my neck and shoulder only just beginning to release the muscles that had been held taut for the twelve hours leading up to that moment of sitting to write.
Yet, from past experience, there was no point in seeking medical treatment!
The Friday evening, just days before I began to write this. I rested my head down on my pillow fully aware that the dull annoying headache that has been my constant unwanted companion for almost three decades was about to unleash its hell of torment on me once again, with a surge of fury to remind me of its all powerful, unrelenting need to be acknowledged as a part of my life.
Saturday morning, 5:30am I was woken by intense pain that felt like I had been bashed repeatedly to the front of my head. The numbness that had flared yet again through the left side of my face during recent weeks had greatly intensified, just another cycle of what had become a new form of normal.
I took the pain and dysfunction in my stride, it was shopping day. Saturday, the one day of the week I now look forward to. That one day of the week that is my opportunity to escape the walls of the home from which I rarely leave now, where ever that home may be.
The rich social life and freedom of independence that I enjoyed more than a decade ago, now a fading memory from what feels like someone else’s life or the scenes of a movie once watched.
Visitors sparse, few and far between, deep meaningful conversation no longer present in my life in any form. Any true depth of friendship once known, now a luxury I simply can not afford, not in time, nor in energy.
Saturday shopping and regular haircut appointments becoming the extent of my social life. Friendly exchanges of brief conversation and banter with business owners and staff, occasional exchanges with acquaintances who shop in the same shopping centre. This is the easing of isolation each passing week.
Far from the depth of friendship and meaningful connectedness I desperately crave, it is friendly interaction outside the members of my family and the walls of my home none the less…. The value of pleasant conversation in these exchanges, far greater than anyone involved would realise, much less give the same regard to.
Getting ready to go shopping on the Saturday morning I showered amidst the flare of pain surging through my head, then I dressed in a way to make myself feel the best I possibly could. All the while fighting against the voice in my head begging me to slip back into my comfy flannelette pyjamas and curl up on the couch for the day.
Fighting the daily weakness in my lower back and legs I did my hair, swaying side to side to keep my hips loose and prevent the stiffening pain should I stand still while using the hairdryer. The pain through my arms intense as I waved the dryer around, my muscles and joints pleading with me to give in to the weakness and simply accept my hair how ever it may be.
Finally, already exhausted, I applied the make-up I knew I would suffer for wearing within a short time of its application, my skin becoming itchy and inflamed, my eyes painfully irritated. I applied the make-up regardless, to spite the will of my body.
To look in the mirror and feel some sense of beauty was what I needed more than anything in that moment!Stepping out of the front door I took a deep breath and fixed my mask in place…. My smile, the mask I wear to disguise all the internal screams of tormenting pain and dysfunction.
Getting out of the car in the shopping centre car park I stumbled, my balance off more than usual. My right foot uncooperative, heavy and hard to lift from the ground, each step causing my foot to spasm, the top of my foot feeling like every bone has been broken.
The perpetual limp on that same side from my hip, greatly increased during those few awkward moments after getting out of the car and walking through the shopping centre doors … By the time we had reached the first shop we visited, in the centre of the mall, breathlessness had completely taken hold, bringing with it unsteadiness.
Quietly I reached for Daniel’s hand, instinctively taking hold he steadied my balance through the strength of his wrist. No acknowledgement of the discomfort I was experiencing in that moment was exchanged between us, Daniel knowing my desire to hide the torment of my body from the outside world.
Moments of discreetly leaning against Daniel to shift my weight from the pain and weakness in my body … Running my hand across his back as he pushes the trolley while we shop and talk between ourselves, all in a effort to find balance once again or ease discomfort … Holding hands for support or taking hold of his fingers when unsteadiness threatens through jarring dysfunction.
To anyone else I assume these acts would be perceived as the overtly affectionate gesture of a wife who refuses to give into the premise that after more than 20 years of marriage such open affection should wane.
Displays of affection once no more than the simple loving gesture of companionship between husband and wife, in time becoming intuitive acts so much more complex in their love, function and care.
We finish our shopping, my mask still in place, my smile held firm.
Not a single person apart from Daniel and our son Ethan aware of the torment in my body during that hour or more, much less the ferocity of pain in my head.
I socialised and laughed to spite the hellish torment of weakness and pain that demanded my attention.
I allowed Daniel to finish my sentences when he could see me in trouble during conversation, the words not always easy to find through cycles such as these. My speech an embarrassment through the stammering and stuttering that chooses the most inconvenient moments to strip me of what confidence remains.
As the day progressed into the early afternoon the left side of my neck stiffened with sickening pain, my jaw on the left side tightened as it became harder to speak through the dysfunction taking over the left side of my mouth, pain radiating up into my cheek bone.
The stuttering, gibberish and inability to finish a train of thought that began to increase weeks ago had now taken complete control of my speech, for whatever length of time it chose. Simply humiliating, far more so than intolerable, even in the presence of my husband and my children.
Unable to access any form of pain relief I longed to sleep…. Sleep being my only escape from the unrelenting pain that invades my body day and night, flares such as these the cruellest torture every moment I force myself to stay awake.
Yet to sleep through the day for even five minutes means a far more restless night of little escape. So I rode through the pain knowing that every tick of the clock closer to 10:30pm was a minute closer to my brief, yet certain to be restless, night time escape.
Sunday morning at 5:00am my eyes open wide after a night of wrestling the pain in my head for the sleep I desperately craved. The pain in my head gnawing away, heavy and sickening.
Every part of my being wanting only to SCREAM!
I quietly slipped out of the bedroom, allowing Daniel to continue sleeping.
Amidst the burning fury in my head I still had housework to do, Daniel and the boys needed their clothes washed for work that week, the kitchen had gotten out of control once again.
Sure, I could let Daniel and the boys wash their own clothes and tend to the housework, but that would mean my body had won.
Giving in would allow the uselessness I felt within myself, toward myself, to be proven correct. Leaving no room for me to have a purpose of my own. My own purpose, function and reason for being…. To my mind already a sad useless waste of space on one hand, while a burden to my husband and my children on the other hand.
Putting the clothes in the washing machine, I bent down to pick up a few items off of the laundry pile at a time, my hands clumsy and fingers uncooperative. Each time bending down to the pile my head feeling as if it was going to explode, pressure of an extreme nature causing immense pain and heat to surge up through the base of my skull and intensify with a blast into the upper left side of my face and head.
By 8:00am I had two loads of clothes all washed and hung out.
I forced myself to carry the airers out into the sun, my muscles pleading with me yet again to give in to the weakness and pain through my arms, shoulders and back. Legs shaking uncontrollably, all the while threatening to allow the weakness of my body to buckle under the weight of each fully laden airer.
Breathlessness gripping my lungs, so much so that my body begins to tingle unpleasantly throughout, while my vision becomes dark and hazy for moments at a time. My stomach trembling within, beginning to ache and pulsate with stabbing intensity…. I struggle to breath.
It is a simple desire that compels me to push through. Simply, to keep my muscles as strong as I can for as long as I can, to retain what physical strength I have left…. Once I give in to events such as this there will be no turning back, of that I am sure.
Yet, even more so than my determination to keep my body as functional as I can, for as long as I can, is my desire to be able to look every doctor who dismisses me in the eyes and declare in all truth that I am not the woman they see me to be…. The fat, lazy, unintelligent, uneducated, neurotic woman who is unwilling to help herself and merely given up.
Throughout the rest of the day I took moments to rest in between doing what I could to distract myself from the torment of my body. My mind ever restless, not being able to settle in one place or position for very long…. Daniel demanding I rest when he can hear my struggle to breathe or see the extent of the discomfort I try so hard to hide.
Resolute I stood, defiantly stubborn!
I refused to be broken or cry from the pain!
Suddenly at 5:00pm, as I chatted with my cousin online, my head exploded with pain of such gripping violent intent!
I writhed through the pain until I could muster the inward strength to withstand the increased intensity searing in my head, the pressure immense, the heat all consuming.
I continued to force myself through the remaining few hours of the evening, if I rested I would fall asleep…. Sleep I simply could not risk!
The evening wearing on, my neck stiffened through the left side with such agony, my shoulder aching to the core of my bones…. Sickening, gnawing, teeth clenching pain. On the verge of throwing up, I didn’t know where to put myself…. I wriggled in my seat from side to side trying to find a comfortable position to ease what discomfort I could.
As Daniel and I sat watching TV through the evening Daniel became more worried, voicing his concern of my listless demeanour and inability to hold a conversation at all. Even our son Joel airing his concern that I would be better off in bed, which eventually came.
Monday came around, I thought for sure I would be seeing an end to this bout, yet troublingly so the dysfunction in my body became worse later during the morning, after I had begun to write much of this piece.
I put two loads of clothes on to be washed as I did on Sunday, hanging them out just the same…. Then as I lifted an airer I gasped, almost falling to the ground.
My lower back had given way.
The daily pain that has resided in lower back either side for over a decade ignited with a searing blaze through my body from my SI Joints. The heat burning in both directions like a stick of dynamite burning from the centre out to the ends…. Burning up through my back toward my shoulders, and down through my butt and legs.
My hips and knees, no choice but to give way!
Butt stuck out like a primate once again, knees bent trying to hold the slightest amount of balance I could, feet splay out like a ducks….. I held tight to prevent myself from falling to the ground completely.
In that instant I was twisted and contorted one more time, a scale reminiscent of each stage of progression through my body and function for the last 11½ years, since The Redefining of Life – 2006. My greatest enemy, the pain, slowly and insidiously invading the most mundane aspects of my life.
Tipped over on my left hip and twisted, the muscles right up through my back on the left side of my spine involuntarily contracting.
Unable to straighten my posture through my spine to stand completely upright.
My left leg stiffening, sickeningly so with gut wrenching pain.
Unable to bend through the knee, the hip and thigh producing a limp that overshadows the chronic daily dysfunction of my right hip.
Pelvic and abdominal muscles tighten through compensation of all that refuses to function as it should…. Its hard to breath.
It is simply just another event no doctor is going to believe ever occurred due to my composure and my strength.
I sit here now, the following Saturday morning, my head still ablaze, my body held taut, twisted and contorted. My tolerance of the pain losing its ground as I long for just a moment of reprieve from the hell I am in.
In telling this tale of torment that began a week ago…. I have no idea when this cycle will choose to end.
I have had little more than three hours broken sleep each night of this week.
I sit for too long and I can’t stand up straight.
I stand for too long and I can’t easily put one foot in front of the other.
I lay down in bed to straighten my back out and the spasms through my body cause the bed to shake as I gasp for breath in between the shocks of pain.
Throughout the week the burning pain raging through my back has shifted locations depending on how I have compensated for weakness or tried to pull away from the pain in movement.
There is so much more I could add of the pain and dysfunction.
So many more are the symptoms manifesting within my body than simply pain itself.
Still, this morning, I will demand my body allow me the easing of isolation once again, simply for the sake of my sanity.
Painful and exhausting as it may be…. I will fight every spasm that contorts my body in an effort to stand up straight. I will refuse to give into the raging pain and heaviness of my head that attacks every sense of my body, impairing my cognitive function while heightening sensitivity of emotion and perception.
I will painstakingly construct every thought and word of my speech with care during every conversation so that there is no opportunity for the embarrassment of stuttering, stammering gibberish to grasp a single foothold…. Mentally and physically draining as it is, depleting what little energy I begin with, I refuse to give in.
My body may be far less functional than a week ago, my tolerance to the pain in my head at breaking point and I may spend the rest of the day laying on the couch.
However, the Strength to Portray Wellness in that short time I escape the walls of my home to shop with my husband, in itself is a rejuvenation of the determined spirit to overcome. An overcoming, I have so often learnt from experience, must be kept hidden behind a mask of strength to prevent any other person from knowing.
Yet, that Strength has now become my Greatest Weakness! … As it does with many.
My life became an existence far more so than a life being lived, far too many years ago.
And I sit here….. And I wonder….. How many people, both men and women, are not receiving the medical support they require, or any other form of support they require in their lives for that matter, simply because they are perceived to be strong by those in their lives and the outside world.
Even the strongest person is still human with fragility, no matter how deep that fragility is buried beneath the mask of human strength and a determined fortitude to rise above and push on against what no one else will acknowledge is seeking to break their human spirit.
Strength through necessity has its place, but while strength can grow and adapt as we require it to, we can never become super-humanly strong, each and every person having their own limits no matter the mask they hold firmly in place.
Tags: Chronic Illness, Chronic Pain, Confronting Medical Apathy, Disability, Injury & Illness Behind The Smile, Invisible Disability, Invisible Illness, Quality of Life, Sacroiliitis, SI Joints, Traumatic Brain Injury