I never thought I’d get to to this point, to the stage where I’m comfortable enough to share my deepest, darkest secret with the whole world when the fear of judgement I feel on a daily basis already dominates my entire existence but here we are, three years of blogging down the line and no longer do I feel as though I should hide away the part of me that defines the difference between my online persona and the verity of my realistic battles. Am I scared? Hell yes. Am I fighting the emotion right now? Even more hell yes. Am I hoping to change attitudes, raise awareness and aspire to continue holding out hope by telling my story? Triple that hell yes. So, let me reintroduce myself…
I’m Bridie, I’m very nearly 23 and when I was just a 17 year old naive youngster figuring out their way through life and taking the attainable fate for granted, my entire world was turned upside down after I suffered a rare form of stroke. Casting my mind back to December 2010 never proves to be onerous because truthfully, that haunting nightmare never leaves. I’m reminded every time I begrudgingly open my eyes on a morning of the damage it’s left with no reversible way back. It all started when I was struck down with a virus – your typical winter bug that after a sequence of sneezes and some bed rest, it became the norm. Only the thing is I wasn’t getting any better, in fact I was becoming progressively worse.
It was the Wednesday morning before Christmas Day – 23rd December to be specific – when I opened my eyes and immediately realised there was something not quite right. My head was thumping but not your bearable kind of headache, a ‘yikes I genuinely cannot move my head from my pillow’ kind of pain located at the back of my skull. I felt weirdly disorientated, an instinct compelling but somehow the power draining from every inch of my body. This was when I violently threw up whilst sobbing, when my younger brother was so worried about my state that he had to call a family member to come and check on me because truthfully, the situation was becoming distressing. Fast forward a few hours later and my well-being picked up; mum was home, I’d vomited until a fresh layer of alertness arose, and although I’d phoned in sick from work I managed to pull myself together up and out of the house. I still felt uneasy and this excruciating headache knocked me for six but I managed to carry on for the rest of the day, and the days after that – even if I was slowly growing paler and weaker – it was Christmas, I didn’t want to cause a fuss, I just remained laid in a separate bubble, watched the clock until four hours was up and I could pop another dose of painkillers. After a not very enjoyable festive period and an extremely concerned family, I had no choice but to call out a doctors visit but unfortunately even that didn’t solve the problem (and whether or not the worst case scenario would have been prevented if I’d have been aware of my severe symptoms and headed straight to A&E still remains to be a personal daunting debate). As my responsiveness declined, my neurological examination seemed to disagree, I ‘passed’ the test aimed towards cause for concern and was diagnosed with bad migraines, advised to take care of myself and off he went.
I’d somehow managed to sustain subsistence for five days straight. I don’t know how, I was often on autopilot, but I did (just about) make it alive. 28th December 2010 was the final whirlwind in a tornado waiting to happen – I had a sudden spout of strange sensations, dizziness and numbness down my left side, the vision in my left eye faded, I very nearly collapsed, an ambulance was called straight away, and the rest was a blur – little did I know that when I swayed side to side unbalanced traipsing down the stairs with the kind hearted paramedic that regular life for me would never be the same again.
To cut an already long and nowhere near finished story short, the hospital process went a little like this: absolutely terrified and vulnerable teenage me was rushed straight to resus with a suspicion it was linked to my heart due to the odd reading in the ambulance, had what seemed to be a million blood tests, a second ECG that thankfully ruled out the failing ol’ ticker, remained dozed and oblivious with my eyes tightly screwed just silently praying all would be okay, waited another few hours or so with my mum always by my side and finally had a semi-conclusion when I was informed the blood results showed my clotting system was manically out of the normal zone. Whilst everyone else around me tried to disclose their panic and confusion I strangely continued to be chilled, mainly because I was so poorly it was like I had faded entirely from reality. The noise of the overworked staff frantically finding answers and the usually alarming machines drowned out with the replacement of the urge to just sleep. The next step was to detect the source of the clotting issue which meant a further circle of experimental tests. A clear x-ray of the lungs and an awaited CT followed by MRI scan on the head, neck, spine and legs was the only element being held accountable for a resolution – and that it did. After a lonely, abundantly disorientated and petrifying stay overnight in a random ward, still with that foggy haze blocking out the sense of solemnity, the news was broke that the scan had shown a large-ish blood clot in my brain and medicament would start immediately. By this point I was so worn out the significance didn’t even register, I shrugged it off desperate to surrender until the next day my closest companions met me teary eyed, I opened the one good eye with my newly paralysed half a body remaining glued to the bed and spoke the words tailoring on the end of my helpless tongue “I won’t die, will I? Please tell me I won’t die.”
The proper term for my stroke was Cerebal Venus Sinous Thrombosis which is an acute blood clot in the area that drains blood from the brain – and in my case, the thalamus, a widely important structure within the deep pit of the cortex and the mid-brain that controls sensory and motor signals, regulation of conciousness, sleep and alertness; which of course explains my indicating symptoms and my already substantially altered perception and ability. Basically, a thalamic stroke. Moved up to the neuro-stroke ward I spent one whole week in the company of the elderly but with my own side room I had no choice but to call home. Thankfully, it wasn’t your typical ischemic stroke. Although using the word thankfully seems trivialising and wrong; I could still talk and move, my mouth wasn’t drooped, there were no physically visible impairment. I couldn’t grasp this bizarre unsteadiness, these overwhelming emotions and unfamiliar sensations. I was pretty much bed bound, could only walk if aided and had lost any previous independence, relying on my family and the nurses to feed me, bathe me, take me to the toilet, and worse still, I’d missed seeing in the new year as a healthy, careless human but I was still breathing, I was being looked after, there was hope for the future, I was still able to acknowledge the precious quality of life, appreciate the well wishes and form a freshened outlook with the dedicated support of others.
So, what was next?
Life after stroke started off surprisingly quite well. Much to the astonishment of the doctors I was home and discharged within 7 days along with a gazillion words of advice, and an enigmatic grasp of harsh understanding of the explanation I’d been told about my illness and my diagnosis. I’d been hurdled with anticoagulants, followed up by numerous back and forth hospital visits and appointments. I still needed a considerable amount of assisting and I wasn’t immediately back on my feet but on the brink of the situation, I was doing rather okay. My appetite was back, my zest for life had reappeared, my fear of needles had reformed to involving needles and bruised arms in my daily adventures and weirdly, I’d never felt so refreshingly well. My stroke had prevented me from carrying on as normal (whatever normal may be); I couldn’t go back to college, I had to finish off my course from home (but still managed to gain an A grade!!), I still had to rely on the trust of others to fully function but I seem to have developed an uplifting attitude, I’d unleashed strength I never even knew I had, learned to never again take the capability to partake in a simple task for granted and my negative viewpoint on life reversed completely. That was until a few months later when it hit me (it being clarified as you continue reading) and from then on I became this broken soul, jumping each hurdle with force but managing to succeed in slowly but surely placing the pieces of the puzzle back together as time healed.
What did I do for the in-between years?
There wasn’t really an adaptation period, I’d been lumbered with a transformative disability and I mastered this new side of me quicker than I theorized I’d be capable of. By god there were obstacles, there was a fence that barricaded me in with my own harmful psychological state, a rollercoaster of thoughts, feelings, worries and isolation but aside from the general plight of disbelief there was no going back and the negative hiccups, I managed to maintain a level headed, pragmatic perspective. There was a sequel of never ending check ups, follow ups, trips to the doctor, rocking the wheelchair round the supermarkets, referrals to all areas of the medical tree, determinative ways to manage my condition, along with establishing my modified needs, allocating a drawer to my alternatively continuous pile of medication and catering to this confounded opinion of people’s ideology of me but there was also the regular activities; the holidays, the gigs, the meals out, the laughs and the suffering I inevitably had to abide by when I arrived home. I volunteered, I managed to go back to college to resit some exams and surprisingly achieve my targets. I persisted in remaining within my identity whilst tackling my demons and the great yet frustrating thing was, nobody knew any different because hey, you couldn’t see me on the inside. I’d not changed, only altered. I was still the same girl with the same ambitions. My mapped out plans for the future had to take a step back but I was still moving forward and that was my focus.
How has it left me?
This is where it comes into the equation, so deceiving it doesn’t deserve a name but to my researched knowledge it does. The first two months after my stroke were far from a breeze but nothing compared to what followed. Having no feeling from head to toe of my left hand side was hard to grasp, so weird I couldn’t help but bring it into a playful manner, analysing every new numb tingle and marking it off my list. I couldn’t shake off the feeling of one split half of me being like it always was and the other feeling completely phantom, like I was being dragged down heavily on one side. It was crazy bizarre but the least of my problems once Central Pain Syndrome – as I now know it – arrived on the scene.
Central Pain Syndrome is the definition of hell, indescribable and beyond anything I’ve experienced. Imagine the worst kind of pain, times it by fifty and you’re still nowhere near the level of intensity. It’s impossible for someone else to envisage this type of pain because usually you associate pain as a temporary thing that can be eased, right? That it will respond to treatment and eventually go away, yes? Well with me that isn’t the case; truth is, there’s no solution, there’s no relief, and I’m stuck in a revolving, terrorising horror with no exit route.
This sort of pain is a delayed response to a thalamic stroke, although it can also occur in other brain or spinal injuries. Confusing to comprehend even for the professionals but it’s real, very real. As my motor nerves are damaged and the regular signals the thalamus is attempting to send down are being blocked off, neurons will impulsively fly off the wall and that will cause unbearably excruciating pain. If I had to define my pain I’d describe it as this freezing, burning, electrical nightmare dispatched from the devil himself. The lash that never leaves, that makes my skin feel as if it’s been torn from the inside, rubbed and scratched like there’s a hidden infiltrator burrowing their pot of acid. Like an intermittent Chinese burn all over the left hand side of my wooden, tight limbs – especially in the hand and the arm which means when this occurs I can’t use it, I have to manhandle with my right hand and as a left hander it causes even further turmoil.
When I think of CPS I think razorblades ripping, torturing sunburn, melted flesh, a menacing animal clawing uncontrollably and it’s non stop, 24/7, happening to you all at once, all the possible types of pain combined into one evil, horrific, torturing experiment. If that wasn’t enough, the unrelenting extremity also appears in the form of hypersensitivity. I can’t brush my hand against a surface without my fingertips exploding, I can’t stand the slightest touch on my skin, even the light blow of air and the cold weather, the stimuli hurts too much to tolerate – like I’ve just pulled my hand away from grinding machinery. There is no circulation to my left hand, it’s constantly cold and stiff, my affected side feels as though I’m being stabbed repeatedly with needles and I’m tired – all the time – just worn out and sick. When my pain is up there at number ten on the rating board I shake, I sweat, I sob, I end up bewildered and distraught; despairingly searching for a release, my limbs flying in all direction trying to find comfort. And the funny thing is, that’s no exaggeration, no words can ever do it justice.
How has it affected me?
It isn’t just the pain that hit me like a ton of bricks, there’s other linked, adverse after effects of my stroke in terms of both physically, emotionally and even socially. The loss of feeling down my left side makes contact with inanimate objects a health and safety disaster in the making (the scars on my left arm will tell you that). I often end up burning or cutting myself because A) I cannot sense temperature and B) I don’t know if I’m holding something or I can’t feel if there’s anything ready to injure me until I realise I’m bleeding buckets. There’s so many uncanny stories to tell you won’t even believe; I once got in a taxi with only one shoe on and didn’t realise until I was halfway down the road because to me, a shoe on my foot and a shoe off my foot feels identical – just completely dead. Although devastatingly embarrassing, it was also hilarious; using laughter as the best medicine has become second nature.
The horrendous dragging aching that partners my pain when it’s heightened is another stumbling block, as are the tightening, quivering spasms, knotted muscles and shooting nerve pain – as though someone’s squeezing me with exerting pressure and they won’t surrender. My left ear has minimal nerve damage so I’m always confronting this irritating ringing blockage sound, and I have quadrantanopia/lost vision in my left eye which means the lower quadrant is blurry, zig-zaggy and cornered off as a blind spot. I haven’t felt 100% well in nearly six years now, being generally worn out and under the weather is in my daily ritual – the knock out pain meds aren’t the best at keeping me steady either. The littlest of tasks can wear me out and be a prompt for the pain to exacerbate – it takes me a good ten minutes to recover after a shower, I no longer write on paper – nor do I have the grip to make a pen font readable – and typing with pain is almost impossible (but at least I have an excuse when my blogging incentive is down, right?!).
Things help; acupuncture helped, my tens machine helps (for all of five minutes until it returns), getting enough sleep helps, treating my body kindly helps but they also backlash on me. If I don’t sleep well it aggravates my pain but the discomfort and the intolerable touch of a bed sheet on my skin contribute towards my insomnia. When my stress factor is high so will the pain, but pain causes stressful strain. Any mood changes will trigger the symptoms but the more in pain I am, the more down I am. I’m constantly in this underlying concerned vicious cycle that too much of something will cause an explode into a full blown pain episode – even something as simple as the weather changing from pleasant to dreary, I’m prone to the deconditioning of this rapid defence system.
I’m exhausted emotionally. The psychological impact of a stroke and chronic pain is undeniably a large one. Fear and depression keep constant company with persistent hurting. I’ve dealt with my own destructive mental health over the years and even when I began to gain control, I’m still left with the guilt, the seclusion, the vulnerability and the loss of the person I used to be. I get angry quickly, I’m cranky, I’m nervy, I’m distressed when I’m left reeling in my own shadow. I’m a fragile mess at times, doubting my self worth and wondering why anyone would ever want to associate themselves with this person who can’t evoke to normality. Who’d want to deal with my problems when I can’t even deal with them myself?
Having a stroke so young means I lost out on a lot of my experienced youth, I never really had the privileged chance to progress and develop my memories, my career, and my relationships without having an attachment and dependence on others. The social aspect of my stroke and CPS is my biggest insecurity. Not only do I find it hard to meet people and introduce myself with a narrowing avoidance of any questions, I choose not to talk about myself, I stay reserved and if needed, I tell a little white lie which will be oblivious from the receiving side. If ever you’ve noticed me pulling out of plans last minute, cancelling my arrangements and leaving early from an event then it’s most likely because my pain is creeping up or I don’t want to overdo it. If you’ve ever tapped me on my left shoulder and have being puzzled why I didn’t respond, I’m not being ignorant, just blissfully unaware of the contact. When I’m in bad pain I’ll neglect those around me, it’s hard hitting on my family when I take all my bitterness out on them. My mind will drift off as the pain ploughs my bubble, it’ll appear as though I’m not listening and it impacts greatly. I don’t want my illness to define me but it consumes so much of my energy that I can’t help but become a fraction of its liquidation.
So, what caused it?
After a number of recurrent tests and fears that I may have a blood clotting disorder, the worst case scenario was ruled out. The initial thought was the contraceptive pill on top of my viral infection and that proved to be 99% correct. There’s no denying I was horrified that this tiny pill I heedlessly allowed entry into my body had been the sole reason I was left to fight. Of course there’s the labelled risks but when you’re 17 years old and doing what everyone else was so commonly doing, you turn a blind eye as a inattentive teen. You never think it’s going to happen to you. I didn’t know back then of the dangers, in fact I don’t even remember my doctor pinpointing the perils because if they did, being the anxious person I am, I don’t even think I would have touched the damn thing and I wouldn’t be here choking on my own words. BUT, along with the back up from the numerous other similar stories in the news I’m seeing more frequently (some devastatingly fatal), I vow to educate and enlighten to prevent this happening to another poor soul. This rarity has allowed me to form into a better person without a doubt and for that, I am thankful.
Will I ever fully recover?
In a nutshell – no. I have a scarring infarct on my brain that won’t ever righten or be reversed. There’s no cure, my prognosis is unpredictable, after five years there’s almost zero chance I’ll regain feeling in my left side (although ultimately this doesn’t even faze me anymore, I’d rather be rid of the adverse chronic pain) and the rest of the untelling fortune doesn’t appear too bright. Central Pain doesn’t respond to regular pain medicine, I can’t just pop a Paracetamol, a Co-Codamol, or Tramadol (heck sometimes I feel like I need morphine and even that probably wouldn’t touch the sides) – and as of presently, I haven’t even found an affective aide in anti-convulsants and anti-depressants despite trying so many types and still grinning and bearing the side effects. With so little known about my mystery condition and hardly any groundwork to be influenced by, it’s a constant battle, a roadblock, an upheaval I’ll be cursed with for the rest of my life, just eager to find answers. I will never be in remission, there’ll be no advanced improvement, it’s not a temporary recovery but a permanent recovery. It’ll be a feature of my figure tagged with me whenever I reach another chapter and no matter how in denial I’ve been, how much I taunt myself with devaluation, when it comes down to it, I guess I have to take it as my hallmark trade, a part of me that’ll cause obvious disturbances, awkwardness and lengthy limbo but which prevails my uniqueness. I’m certain I’ll eventually pursue my pride because the acceptance nurtures every day.
What’s my current condition?
Some days are worse than others and ultimately it depends on how busy my schedule has been. I can have a week of a generally low pain threshold but as soon as I start to feel optimistic, it scolds me again. I could be laid crying on the floor begging for the pain to subside one day and the next I’m sighing with contentment, treasuring the limited time I get to just breathe. The more activity I participate in, the more severe it is, when it gets worse it stays that way and often increases as the day goes on which means generally I try and avoid doing too much but life being life implies it’s simply unattainable. I can’t have fun without paying for it later. Fun and pain don’t conjoin in the same sentence and sometimes it’s more unchallenging to just withdraw myself. I’m a spoonie and with chronic illness there are always ups and downs along with the ill-informed attitudes. Some days I’ll lose the war, others I’ll shout victory. The most frustrating facet is the unforeseeable and relentlessly oppressive guessing game. I have no idea how I’ll feel waking up most mornings yet despite the outcome I have no choice but to push myself. I honestly don’t even know what pain number I am most days, all I know is I have pain but it’s normal procedure for me. It’s those flare ups in which I feel I’ve been hit violently by a car that drag me down the most. I’ll break down, I’ll crumble, I’ll feel weakened and as though I can’t handle it but I’ll eventually get back up again; I can only do my best. Luckily I’m blessed to have found a doctor who is all eyes and ears, the doctor-patient relationship is extremely important in my lifestyle and right now, working as a team simultaneously taking baby steps in corralling the manageability of my pain is my pathway to hope.
Sometimes I forget how much I’ve been through, I’ve automatically transformed into this resilient warrior without looking back. It’s scary to think I’ll endure this for the rest of my life but I have no other choice, there’s no alternate to carrying on as normal to the world without dwelling too hard. What’s the point of sitting at home complaining? It doesn’t get you anywhere. I always have to remind myself, although my suffering is painful, there’s people out there far worse off, and this is a second chance – a plight at life. Every day is a gift.
Living with an invisible impairing illness is tough, I’m misunderstood and I constantly feel like I have something to prove because you can’t see the tearing away of my walls as I speak. My health always has to be put first but I promise you I’m not lazy, in fact it’s shattering putting on this fake front of seeming well. I feel saddened by the fact the people who know me best don’t ever ask how I am, but also grateful because it’s guaranteed I’ll say and act like I’m fine when I’m far from it. I don’t want to be felt sorry for, all I ask is for people to inform themselves. Everyone observes who I appear to be but only a limited few know the real me. You can only perceive what I choose to show; I can’t be miserable all the time, it doesn’t pay for me to do so. I’m always working hard at ridding of the poignant melancholy, if I seem happy it means I probably am temporarily happy; nothing more, nothing less. It doesn’t mean I’m not in pain or tired or miraculously getting better, it means I’m merely coping. There’s always two sides to a human being: the public side and the private side. Remember there’s so much behind a bluff smile, there’s so much you can hide but you can’t hide forever. I am who I am.
Giving up isn’t an option, I won’t give up. I’ll want to quit, I’ll want to fall over the edge but I can’t stop being ill, it doesn’t work that way. So I rise from my own ashes, I keep holding on to that line of hope, the line that is worn and frayed but still hanging on.
Stroke: 0, me: 1.