Back to my back..

It’s a cloudy, grey, drizzly day, I am full of cold, coughing and struggling to breathe through my nose, lacking both sleep and energy, unable to taste or smell; and yet today, I cannot feel anything, but gratitude. Today is my CES birthday, a two year anniversary since my life-changing emergency spinal surgery. CES stands for Cauda Equina Syndrome, induced by a spinal cord injury that can provoke paraplegia, or a range of mobility issues, affects bowel and bladder, and pretty much everything from the waist down. I’m often asked what caused my spinal cord injury, and the short answer is: ‘I’m not sure, but an accumulation of events led to a disc gradually slipping and impinging on the nerve root’, this is the long answer:

I didn’t get my CES from a dramatic, adrenalin fuelled accident such as skiing or sky-diving, I didn’t acquire it in the aftermath of some dreadful car crash or a freak disaster, or even in the noble act of pregnancy or giving birth, nope mine was a boring, gradual onset of increasingly worrying symptoms, as I stoically (but stupidly) persevered with a bad back, just living an independent life, persisting in thinking I was stronger than my reality.

Looking back, there were several signs that there was a problem, but it is only in hindsight that I have been able to connect the dots, and see the warnings too late for me. I suspect my journey from Greece to the UK in December 2014 started the problem. I had left Greece in my trusty, 18 year old, Ford Fiesta, ‘Rubini’; a lovely old lady with relatively low mileage for her age, but holes in the floor, a disconnected (faulty) heater, and inadequate windscreen wipers. She was perfect for the few miles drive from my island home to the beach, and a fortnightly trip across the mountains to the main town, for vet visits and provisions, yet I had taken my chances and pushed my luck taking her to Southern Italy, where I had intended to spend my first winter with Platonas, my stray dog puppy. However, the home (and associated car) in Italy didn’t work out, and I figured my best option was to stuff everything back in to the still sandy Rubini, with Platon curled up neatly on the passenger seat beside me, and drive as far as I could towards London; hoping that if I fell short, it would be close enough that someone would help me, without having to distress Platon with an experience as aircraft cargo.

We were driving through the most breathtaking scenery, but equally as terrifying, road out of Italy, which was loaded with heavy cargo lorries from the port of Genoa. The AutoFiori (Autostrada A10) passes through Liguria, across a steep and sprawling hillside, though a series of tunnels and viaducts, sometimes plunging you into echoing darkness for almost 2 km, before ejecting you onto vertiginous viaducts, precariously perched high above ravines in couloirs that stream to a sparkling sea; almost too beautiful to take your eyes off, except that the road is too narrow, too fast, too busy and wayyy too dangerous to take your eyes off either. As I carefully negotiated my way through the perilous barrage of trucks and juggernaut lorries, in my underpowered old lady of a car, I suddenly felt a stabbing in my heels, too intense to ignore. I suspected I had simply tied the laces of my trainers too tightly, but remember first struggling to untie them whilst driving, and having to pull over at a service station to loosen them. I must have stepped out of the car to stretch my legs, completely unaware that I was relieving the pressure on my spinal cord, caused by a seemingly innocuous seating position. Anyway, I carried on my journey, making it all the way back to London, having a fantastically, wonderful adventure on the way, and irritatingly tight shoe laces (or so I thought) completely unaware of the damage I was doing.

After a short winter period in London, I had resolved to sell my home of 20+ years there, looking for something more dog friendly to accommodate my darling, but decided to wait until after another summer in Greece, so I packed up the house to rent it for the interim. My back ached from carrying heavily laden boxes of books, clothes, kitchenware, everything, into the garage; but you know, it was just a bad back, so I kept going. It was a bitterly cold winter, as I walked Platon round the sprawling graveyard, with glittering frost and plumes of our warm breath in the biting cold air, and yet despite the sub-zero temperatures, I noticed one foot was always pleasantly warm as if I had a heating system in the sole of my right boot. It took me a while to address, as it didn’t hurt, in fact it was a lovely contrast to the blue, cold toes of my left foot. But, since I realised it was a neurological issue, I eventually presented it to my GP, who dismissed it with ‘well if it doesn’t hurt, why worry?’ and I foolishly left it at that.

My drive back to Greece in April 2015 was in a car I bought ‘for Platon’, a Toyota Rav 4, with a much higher seating position, and much more room for my height, Platon, luggage, everything. We had a good journey down, apart from a strange bout of nausea and breathlessness, as I headed through the now familiar but no less intimidating deep tunnels through Liguria. I wondered whether it was purely psychological, but there was a lack of rationale to the feeling, I wasn’t afraid in my mind, despite my symptoms, which I eventually put down to an upset tummy, but I am now not so sure, and wonder whether somehow the duration of the journey, or even the memory of my stabbing heels was another unheeded warning.

My back was often a bit sore, I had packed up 20 years of accumulated living, well ok, ‘stuff’, into boxes, traipsed them down at least one, mostly two flights of stairs to the garage, then spent a week driving, and lived with a loving but stubborn dog of around 30+ Kg, whom I was often impatient enough to pick up, when his mood and mine differed, such as when he didn’t want to get in the car, and I did, for example. Then I found Leo (timid, terrified, and bearing the broken bones, bullets and many wounds of his abuse), and had two darling dogs to manage. They were absolutely fine most of the time, but Platon became reactive on the lead when I walked them together, I suspect in a protective manner of his much adored and fearful, little ‘brother’. I was probably a comical sight, walking along the curvaceous mountain roads, with Platon lunging and barking at anyone or any vehicle that approached us, as Leo hid nervously behind my legs, and leads tangled the three of us together. Fortunately they are quiet roads, but still, it wasn’t an easy walk for a bad back.

Then the storm came, we have some wonderfully dramatic electrical storms on the island, the thunder crashes (Zeus moving the furniture, as my dear friend Hilda quips), and lightening forks through pink and purple night skies. The rain relentlessly hammers on the glass balcony doors, and seeps through the cracks if we don’t secure the shutters, drumming on the roof and drenching absolutely everything! The electricity often fails, and we have to unplug the internet for fear of blowing the modem, so there’s little chance of anything other than watching the storm by candlelight, or sleeping. The dogs were excitable (Platon) and panicked (Leo), and as I was trying to keep them calm and hunker down for the night, I heard a faint scratching at the door, then mewing that grew with intensity. Dressed in my pyjamas, I manage to keep the dogs inside as I ventured out onto the step, finding a stray cat and her kitten, crying for mercy. My neighbours, the Russian ladies in the apartment below ours, were great cat lovers, and I remembered seeing a cat box on the wall of their patio. Thankfully, it was still there when I got soaked to the skin to fetch it, and after wrestling to keep the dogs inside and retrieve a dry towel for them to lie on, the cat and her kitten were keen to get in it. I struggled once more with the door, trying to keep the two dogs in as I brought in the cats; I lifted the not particularly heavy cat box, and felt a sharp stab in my lower back. It brought me to my knees, and as I knelt hunched over the crying kitten, with my wet hair plastered to my face, and rivulets running down my neck, on my knees, in the storm, on my doorstep, I did wonder how comical this painful story would be in the telling! I eventually managed to prize the door open, and slide the cat box inside, before crawling to bed, with Platon and Leo whimpering, seemingly sympathetic, as they settled beside me.

I spent about 3 weeks hardly moving from my bed, my Italian neighbours kindly took the dogs out for toilet walks every morning, my landlord gave them a quick walk some afternoons, and plentiful parcels of food arrived from friends and neighbours; such is the Greek virtue of philotomy, my back hurt like hell, but I was never hungry! The lovely local physiotherapist made house calls, and was reassured that the pain was only in my back and hadn’t radiated down my leg, and the doctor handed out pain-killers like sweeties.

Eventually I started to feel more able, and regained mobility, enough to take the car for a service in preparation for my now delayed journey, back to London. I set out early, to avoid driving in the heat of the day, leaving the dogs at home with the balcony doors open so the air could circulate, and they could lie watching the sail boats bob along across the still blue sea below. It seemed strange to be completely alone without their constant endearing company, and I breathed in deeply the solitude of my journey, across dusty mountain roads, strewn with lazy goats that dawdled precariously along the cliff edges. Whenever I approach the place where I first found Platon, a remote road, far from any villages or habitation, my chest starts to tighten, and I experience an emotional reaction; sometimes tearful (that poor, sweet, soul, left to starve and suffer), sometimes angry (those bastard monsters that could perpetrate such an act of brutal cruelty) and that day was no different, except that it was cut short, by amazement, and another Puppy! Poppy (short for Penelope) as she became, was a few months old, skinny and cowering in the road when I saw her, I stopped the car, and cursing that for once I didn’t have any leads or even treats on me, approached her very slowly. I squatted a few metres from her, and let her draw near, which she did tentatively at first, before planting herself submissively between my knees. I gently stroked her dusty fur, feeling her skinny ribcage and spine too easily, noticing the wounds on her hind quarters, wondering what I was going to do; but knowing I couldn’t leave her abandoned here in this wilderness to starve to death. I stood and sighed, before talking gently to her as I slowly walked over to the car with her following, opened the boot, into which she jumped without waiting for me to ask or change my mind. So suddenly I had three dogs to take back to the UK, well 4 actually, as I had already agreed to take Dexter, another dog to a home I had found for him in Switzerland en route. And so I must add a car journey, mostly alone with 4 dogs, my luggage and a bad back, for a week across Europe to another thing I inflicted on my poor back, when it was already struggling.

Once back in the UK, I tried not to drive too much for a while, I was tired, my back was still sore, but the easiest way to walk three untrained dogs, is to take them to a secure paddock (20 minutes drive away), and let them chase each other around for an hour. It wasn’t ideal, but it was manageable. I started studying canine behaviour, and found it impossible to sit through the lectures, standing at the back of class trying to stretch out the odd feeling in my leg, and then grimacing as the sharp stabs returned, just before a trip to Athens for a wedding. I remember at the airport, wondering why I had even contemplated anything with a heel, as my grey suede knee high boots weren’t exactly towering, but they definitely had a heel.. so I purchased some foldable pumps in duty free, a little leopard print pair of salvation, worth every single penny!

I arrived in Athens to be greeted by an old friend, a gorgeous English girl from our modelling days, decades ago. She warned me she was struggling with a dodgy knee as she whisked me through the streets to her home, where we collapsed on the sofa, and I suddenly couldn’t get up again. Every time I moved the shooting pains attacked, but you know, I didn’t think it was anything serious (?!?). So the two of us managed, we hobbled around together, laughing at our predicament, and gritting our teeth as we stoically soldiered on. I attended the wedding, even managing to dance a little in my newly purchased pumps, but after the frivolity faced another 4 hours seated on an aeroplane back to London, which really added insult to injury, as far as my back was concerned, literally.

The next day, having missed my dogs desperately, I drove them to the paddock for a run, except that I started to feel light headed and nauseas as I joined the motorway, and as fought to keep panic at bay, suddenly realised I couldn’t feel or move my right leg. This is not a pleasing revelation, whilst driving in excess of the speed limit on the M1, and I quickly searched for a safe solution. Fortunately there was very little traffic about, so I headed over to the hard shoulder (emergency lane) and braked shakily with the handbrake. I struggled to get out of the car and stumbled to the barrier, where I leant over breathing deeply, focusing on the toes of my boots, trying to stop myself from fainting. Again the change of position must have removed the impingement from the nerve, as I realised as I got my breath back, that I had regained mobility, if not all of the feeling in my right leg again. I made it to safety, but the pain when seated was excruciating, as if the muscle in my right thigh was tensing involuntarily, and I had to stop every 5 minutes to stand and relieve the pain.

I went back to my GP insisting on an MRI as quickly as possible, and endured the most painful car journey, lying agonizingly across the back seat, to get to the appointments. On receiving my results, the GP informed me that he would refer me to physiotherapy, despite having informed him of what I now know to be red flag symptoms, and I struggled through Christmas and New Year, with an irritatingly persistent urge to urinate, without passing much (neurogenic bladder), and what I thought was an upset tummy (impaired bowel control). Eventually, impatient with the GP’s tardy referral, I booked myself to see an osteopath locally, who took one look at my MRI, and recognised my symptoms, before sending me immediately to A&E (ER room), where I was operated on ASAP. (You can read that episode in my previous post: https://purenourishment.wordpress.com/2017/01/06/looking-back/) When I woke from surgery, my heels felt as if they were being stabbed with hot, sharp knives, which led me to discover that they are the site of the insertion for the affected nerves, suddenly the early warning signs made sense.

My outcome is incredibly lucky; I have almost full mobility, although two years later I am still working on building my core strength, and still can’t lift anything heavy, or even push a full supermarket trolley. Despite my initial fears, and necessity of a second emergency surgery, I am able to use the toilet normally, and don’t have to rely on the catheters, as I feared so dreadfully. Most of the saddle-numbness has disappeared, apart from a small area on my right thigh. The PTSD I suffered post-surgery, seems to have abated, I haven’t had a panic attack for at least 6 months, but I am still careful about driving on motorways, especially in the dark.

I know from the CES support forums that I am definitely one of the fortunate ones; many of my fellow sufferers have had to adjust to life in wheelchairs, or with walking frames and AFOs (Ankle Foot Orthosis – plastic supports). Many people with CES suffer with incontinence (both types), and rely on catheters and unpleasant evacuation techniques as part of their daily routines. Many people’s relationships fall apart, they lose their ability to work, and suffer with debilitating depression, and isolation, as a result of their CES. Whilst my surgery wasn’t life-changing in those ways, it has given me perspective, I no-longer strive to be fitter, faster, stronger in the gym; I am content to be able to walk the dogs and carry smaller hand bags. I’ve found a true appreciation for simple pleasures, and take time to reflect on my abilities, rather than dwell on my inabilities or failings. I am also acutely aware of an increased empathy for anyone that struggles with mobility issues, and hope that my increased awareness is reflected in increased kindness towards others.

So, a little back ache at the end of the day, is not something I can complain about, I might not be able to ski or ride horses again, but I can walk my dogs; and trust me, the little things really are the big things, sometimes we just need a little perspective! Please take care of yourselves, especially your backs, and if you have any suspicious symptoms, please insist on a thorough investigation, and don’t let doctors fob you off with their lack of concern or failure to take you seriously. Love & blessings, Hxx

{Photo: Rubini, with Platon and I on board, Greece 2014. Words, by me, Hayley Darby © 2018}

If you want to know more about CES here is a useful little video: http://www.spine-health.com/video/cauda-equina-syndrome-video

Looking back..

tattoo-blanket

It’s a grey rainy day, and I’m snuggled on the sofa with the dogs, and a hot cup of tea (Chamomile with spiced apple), watching the raindrops racing each other down the long window panes of the patio doors. The garden is enjoying a drenching, and the lawn is getting ready to make paws muddy. It’s a relaxing afternoon, my back is sore, partly due to someone driving into the back of my stationary car recently, but partly because it often will be, so I am indulging in horizontal therapy (lying on the sofa). Platon is curled up under my knees, and Leo has dug himself a trench in the cushions by my shoulder, on the fabulously wide sofa. Meanwhile Princess Poppy has the other matching fabulous sofa completely to her Diva self, where she stretches out and sighs, nonchalantly. I am in a reflective mood, partly due to the weather but also because today is the first anniversary of my life-changing surgery.

A year ago today, I was enduring the most terrifying moments, as I was prepared for emergency spinal surgery. After spending a night on a trolley in A&E (Accident & Emergency, or ER for my US friends), where I had been instructed not to move for fear of serious permanent damage, an MRI had confirmed my predicament, and doctors were rushing to get me into theatre. I had unwittingly sneaked a cereal bar for breakfast, and this delayed my suitability for general anaesthesia, buying me time to absorb the dreadful news and risks involved. I lay in my hospital bed feeling nauseas, and unable to focus properly on my surroundings, as adrenalin coursed through my veins, and my pounding heart drowned all other sounds to merely background din. I did at some point feel as if I was observing myself, as if this experience was happening to my body, but that I was watching somehow detached; I’m guessing the mind’s way of coping with such trauma. A surreal point in time, that will forever differentiate the before and after, a gut wrenchingly fearful realisation that my life was about to change, and that I had travelled past the point of any control at all, and the raging terror of what I would wake up to.

I had developed ‘Cauda Equina’ where a prolapsed disc was impinging on the nerve root, for the whole lower body. Termed ‘Cauda Equina’ which is Latin for horse’s tail, because it describes the appearance of the nerves that after travelling neatly in the spinal cord emerge to fan out down each leg, and affect the bowel, bladder and reproductive organs. I now know that the symptoms of ‘saddle numbness’, and changes to my toilet function, (feeling I had a full bladder, but passing little urine, and very urgent bowel movements) are red flags that my GP had wrongly ignored. On the advice of an osteopath, whom I had sought treatment for my intensely painful back, with radiating pain in my right leg (incorrectly assumed as simply sciatica), I had been admitted to hospital the evening before. He had instantly recognised the red flags, along with being horrified at my prior MRI results, and admitted that attempting to treat me could be very dangerous for me, not to mention professional suicide for him. I am so very grateful that I had been recommended to such a competent practitioner, and that because of him, I didn’t wait any longer for the medical attention I needed.

My doctors explained that the impingement on my nerves could worsen, possibly hurling me into paraplegia, or less severe walking abnormalities (from drop-foot to requiring a walking frame), incontinence, and loss of sensory feeling in my lower body. They then asked me to sign consent for the surgery required to prevent this horror, that by it’s nature of shaving the bone away from the nerves, also presented the same risks, along with the added hazard of blindness due to being operated on face down. Don’t ask me how this risk is possible, I did ask the doctors, but was too petrified to digest their answer. I remember checking photos on my phone, of the things I really wanted to see again (my three darling dogs, the turquoise Greek sea, golden Californian sunsets), and feeling so utterly helpless. I’m sure the risk is a very small one, but the threat of blindness tipped me into a tailspin of panic, of an already terrifying spiral.

Then the time came for the sides of my bed to be raised and secured, so that they could wheel me to theatre. I had a lovely care assistant that accompanied me, a beautiful Somalian girl whose cheerful countenance and compassion had managed to break through my fearfulness. She told me how much she loved her job, which was blindingly obvious as she sang and joked around the ward, and that only 3 weeks earlier she had left her post as a check-out girl at Asda (a supermarket chain). My Dad had joined in with her jokes, suggesting I needed a pound coin to take my trolley (bed) to the top floor of the hospital, where the theatres are situated. I was simultaneously grateful for his humour, and exasperated that he wasn’t taking my fear seriously; on reflection I know that he steadfastly refused to believe in the possibility of an impending problem, he didn’t do stress, unless it was completely unavoidable. As far as my Dad was concerned, I was in the hands of experts, and worrying simply wouldn’t change a thing.

I remember the tears rolling into my ears, as I lay flat on my back in my gurney as we took the lift, looking up at the kind nurse, a gentleman in scrubs, and my mother, whom I had insisted accompany me; like a child of 4 or 5 yrs rather than a woman of 45 years, still in a state of disbelief that this was actually happening. As we approached the daunting swing doors to the anaesthesia suite, the Somalian girl declared she was unable to proceed from here, and asked if she could say a prayer over me, to which I agreed gratefully. She then asked if a Muslim prayer in her own language would be OK, and I was so touched by her hesitancy, assuring her I’d appreciate absolutely anything, seriously anything. And as I was wheeled away, her kind words followed me.. ‘Inshallah’ is all I remember.

When I woke in the recovery room, I experienced blind panic, still groggy from the GA, in extreme pain, and dosed up on morphine; I couldn’t see clearly just a blurry movement of shapes initially. I remember screaming, as much as my lungs could manage, and sobbing uncontrollably, gasping for breath, and pleading for nurses to hold my hand, feeling so desolate and lost in a world I didn’t understand. This was the first panic attack of many, which haunted my nights in the next weeks, and continued with less frequency, but debilitating and embarrassingly in the following year. Apparently PTSD is not uncommon following spinal surgery, and the forums for Cauda Equina Syndrome reflect this clearly. I was eventually calmed and returned to the ward, when my vision returned, and reassured that I hadn’t lost my sight. I said goodnight to my parents who had been waiting, and giving in to the residual GA and morphine, fell into a deliciously deeply drugged sleep.

I was woken abruptly as frantic screaming pierced my consciousness; I thought the woman in the next bay was being murdered. I remember being perplexed at the nurses sitting quietly at their station, and then assumed she must be under-going some horrendously painful medical treatment. The screams shattered my fragile state, and carried on relentlessly till morning, when I noticed the woman in the bed next to me was whispering secrets to a teddy bear, and the woman opposite became aggressive, accusing a nurse of trying to kill her. I then discovered I had been placed in the only available spare bed, on a ‘dementia with trauma’ ward, full of mainly elderly patients with broken hips apparently, and one girl closer to my age with a bleached blonde pixie crop, also flat on her back in the corner.

Once properly awake, I was delighted to discover I could wiggle my toes, and notice the feeling of the sheets tucked around my feet, this induced a euphoria that overshadowed any pain I was most definitely suffering. I lay motionless, afraid to disturb my surgeon’s work, but flooded with relief; I had made it through surgery, could see, and the feeling in my feet didn’t make the possibility of walking too bleak. Actually, I am very, very, lucky; my outcomes are so much better than many of my fellow CES (Cauda Equina Syndrome) sufferers. The blonde girl was wheeled away to another location before I had a chance to talk to her; my heart sank as the only possibility of any sane conversation disappeared down a corridor. (We have since made contact, and found out we have a lot more in common than the same surgeon. She was my first lifeline of advice and support from a fellow sufferer when I eventually left hospital, and we remain in touch.) I lay there alone with my thoughts, still trying to piece together what had happened, how I had got through the fear prior to surgery, and what I might face in my recovery. My injury had occurred slowly, a number of small events that caused the disc to slip a bit further each time, over several months; and had been largely dismissed by everyone, including my GP. If this reaches one person who experiences something similar (your chances are slim, 2 in a million), I’d encourage them to demand the medical attention the red flags warrant, recovery is largely dependent on the severity and duration of nerve compression, ideally surgery is advised within 24 hours of onset, I had been struggling for several weeks.

The dementia element of my ward was extremely stressful to deal with, listening to women screaming at nurses trying to help them, repeatedly calling out the same questions, and whispering to their teddies. As I struggled with my own feelings of vulnerability, I could only imagine how frightening it must be for those with even less understanding, and a fainter grasp on reality. Then I realised that I needed the toilet, and couldn’t imagine how this would be possible, but my fears were unfounded when I was initially given a bedpan, and failing to christen it was allowed to be maneuvered by nurses onto a Kermode, which was irrelevant, because I still couldn’t pass anything. Meanwhile a kind health care assistant noticed my rising levels of anxiety, I must have been quite distressed, because I had a panic attack as they finally moved me to an orthopedic ward, minus the dementia element, where the most noticeable mental health problem was me. I gulped air as I struggled to breathe, my gown was soaked with sweat, my heart pounded in my ears, and I couldn’t stop sobbing. I am fairly sure they gave me something to calm me, and do remember being hooked to a morphine pump, before falling again into another drugged deep sleep. When I woke again, it was to the smiling, caring faces of the women in beds opposite. Jean and Maureen welcomed me to Ridge ward, both kindly supportive and encouraging, and I was so grateful to have moved there.

The next day, having been unable to pass urine and fitted with a catheter, my surgeon sent me for another MRI. I was wheeled through the maze of hospital corridors, counting the lights on the ceiling, and watching the assortment of busy people walking around me. Being lifted from my bed onto the hard trolley for the MRI, post surgery, was one of the most physically painful moments in my memory. I felt sick, and couldn’t bear to be shoved inside the tube they slide you into, as panic welled in my chest and crept up my throat, until I was crying hysterically. The medical staff were amazingly patient and understanding, turning me around so I could enter the scan feet first, and talking to me soothingly through the headphones, reassuring me they were working as fast as possible, so they could return me to the comfort of my bed on the ward. Although they expertly rolled me onto sliding boards, and across the plinth back to the gurney, it was the feeling of fragility, as much as the physical pain that I found so distressing. I am tall, with a slim build, but have always felt strong and quite robust, suddenly I was afraid that any wrong move could break me, and hurl me back to the risks I faced pre-surgery. This feeling prevailed long after leaving the hospital, where I found myself nervous on car journeys (having been advised not to sit for long), and afraid of children playing (incase they knocked me), I flatly refused to go into a supermarket in case someone knocked me with their trolley, and I avoided heavily populated areas generally.

The results of my second MRI suggested my bladder nerves were still implicated in compression, and my surgeon decided that it would be prudent to take me back to theatre to ‘tidy them up’. He explained that he would cut the same incision through flesh and muscle; to clean up any debris ensuring nerves were clean and free. I didn’t have time to worry much about the second surgery, once it was decided they all moved very quickly, this time unhampered by food in my stomach, as I hadn’t been able to face eating. By this time I was resigned to the lack of control I had over my situation, and having survived the first surgery, had built trust in my surgeon and his team. As I was wheeled again to theatre, I noticed my face was dry this time, maybe it felt too surreal to get upset, or maybe I was emotionally exhausted, or perhaps I was even getting braver, though I’m not entirely convinced about that bit. I remember being disappointed that I had a different anaesthetist attending to me, but he was friendly and joked as he sent me to sleep. When I woke again, I was in unbelievable pain, my body was throbbing, and the only way I could cope was to shut down, mercifully I was drugged enough to sleep, and with the bonus of nobody screaming murder on my new ward, this time to wake me.

The week or so that followed was a mixture of highs and lows, my first few steps were victorious, but still an inability to go to the toilet gave me nightmares about life with catheters. I had fantastic ward mates, we were a group of six women of varying ages and backgrounds, who formed a supportive cushion against our individual traumas. We checked in on each other, alerted nurses for each other when we saw someone struggling, and talked about the things that motivated our recoveries; so they all knew about my dogs and the Greek island waiting for me. By coincidence, one lady was the mother of a girl I went to school with, who now also lives in Greece, so we shared stories of my school days, and I took photos to send her daughter, after getting in touch again via the power of Facebook and thanks to hospital wifi. Eventually my bladder started working (hoorayyy!!), and I could manage the stairs, albeit very slowly, so passed the test for discharge, and to clear a bed for someone in need and waiting.

It was quite daunting leaving the safety of the hospital that had become so familiar, that I found the rhythms of medicine rounds and nurses change over comforting. It was also the beginning of a long journey of recovery, but a year later, I can look back and remain incredibly grateful. I am so thankful for everyone who sent well wishes, for competent surgeons, gentle physiotherapists, and caring, compassionate nurses, for friendships made from our hospital beds, to the thoughtful, kind visitors, for the cheerful tea lady, for friends and my Mum for looking after my dogs, for everyone that was part of my hospital experience. My gratitude extends to everyone that cared, supported, loved, encouraged, and commiserated with me on my journey, it really is in adversity that we learn who our friends really are. And of course I am grateful to be one of the lucky CES patients, who can walk unaided, can go to the toilet, and has an invisible injury. I am still wary of doing further damage; suffer with soreness, and coming to terms with limitations due to reduced strength and ability to withstand impact. I am so grateful I can walk that it would be churlish to miss skiing or horse-riding, but I still find it hard sometimes that I can’t run, even a few paces, or hike steep pathways down to favourite Greek beaches, without struggling. However, the road to recovery is not over, and as I continue to build strength, hopefully these things will be within reach.

Meanwhile, I lie here on the sofa, feeling the weight and warmth of my dogs on my legs is such a blessing. Leo has moved and lies with his chin on my thigh, watching me type one handed with my laptop in the crook of my arm. Poppy has deserted her couch, and lays on the floor beside me, looking up adoringly at Platonas, my rock, whom remains steadfastly supporting my knees, and my heart always. It’s now dark outside, and the rain gently tapping on the roof of our converted barn, echoes in the rafters, a scented candle flickers on the dresser, and I wiggle my toes to a year ago, and all that has happened in between.

Please take care of your back, and if you ever recognise any red flag symptoms for Cauda Equina, please insist you are seen by a neurosurgeon immediately! For more information, this is a very useful video: http://www.spine-health.com/video/cauda-equina-syndrome-video

Blessings & love, Hxx

{Photo credit: Britlively, Dior Homme SS14 photographer: Filep Motwary, Flo …Nooo, I don’t have a tattoo, but I do have an awesome little scar, that’s testament to my journey! Words by me, Hayley Darby ©2017}

Joy on a grey day

nurse teaIt’s a cold grey day here, and I’m lying on my day bed with Platon lying against my legs, his chin resting gently on my ankles, as he snoozes between watching the world outside the long French windows. Leo has trampled all over me, and the bed, searching for a comfy spot, but dissatisfied with all his options, has moved to the sofa where he’s curled up alone and uncharacteristically grumbling. He’s usually my sunshine, a super happy chap, full of joyful enthusiasm, and the friendliest, most affectionate dog I could think of; but today he’s having an ‘off’ moment, and comically grumbles in little half barks and almost growls at noises outside. I suspect he’s over tired, sulking and like a toddler fighting sleep, he will soon give in to that sweet dark oblivion, and float to another realm of consciousness. I wonder if he dreams of our favourite little beach in Greece, and swimming out in the clear turquoise waters, which he does so, much further than I dare to. He has a leg injury that gives him a disadvantage on land, but in the sea he’s unstoppable. Finally, his little chest has started to rise and fall rhythmically, and we are a peaceful little trio in our cosy abode. I stifle a yawn as I type, and Platon sighs loudly, as I pull the blankets up a little higher, and he snuggles back into me. I too could fall asleep, I tire easily since my surgeries; especially since I have started my physiotherapy exercises and increased my activity daily.

Yesterday I had a hospital appointment; it was the first time I had been back since my surgery. I still feel somewhat fragile; an awareness of my vulnerability, previously not even glimpsed, as I felt fit and strong, and lead an active lifestyle. Walking in public places makes me anxious, my injury (spinal) is invisible to most, as I can walk unaided and have no casts or bandages. It’s a ridiculous fear of being knocked, although I’m assured my spine is now stable, it still feels odd, and I am acutely aware of the risks associated with my condition, however small they are in reality. I saw the urology nurse, since after my first operation there was a complication with my bladder function requiring a further surgery, and yesterday I got a clean bill of health, a huge relief. My Cauda Equina experience has certainly helped me appreciate how much the little things, really are the big things!

As I waited in the hospital lobby for my lift home, I met Joy, a health care worker that truly lives up to her name. She took a moment to recognise me, (I clearly look very different with freshly washed hair, dressed and standing, to my hospital bed state), but her face soon lit up, as she recited my bed and bay number on the ward. Every morning of my hospital stay, Joy greeted the ward with her sunny smile and sing song voice, serving us breakfast, lunch and supper, remembering how we all take our tea, and our individual food preferences. She was always cheerful, thoughtful and considerate, and she brightened the room with her smile. When she made her rounds, she served us all as if we were her favourite customers in a smart restaurant. Maybe it’s maybe not the tea, but the person serving it thats the best medicine. This small part of our day made me feel more human, it was a time when as we picked our meals from the menu, however basic, that we regained some independence, choosing gave a small sense of control; when the rest of our day was determined by our medical team and hospital routines. Again, I am reminded of the little things that make a difference; and wonder how often we have missed opportunities to give a little that will mean so much to someone else, without us ever realising how much importance it is to them.

Meeting Joy yesterday reminds me how grateful I was for the compassion and kindness of the nurses and health care workers that cared for me during my hospital stay. I cannot imagine what a tough job it is, and have huge respect for all of them. If everyone worked with the same selfless enthusiasm that Joy does, we would all reflect more sunny smiles in our environments. Talking of which, it might be a cold grey day in February here, but it’s not a bad day, we have blossom on the window sill and daffodils on the table, and Leo has woken up, back to his happy smiley self, enthusiastically stretching into a play-bow and wagging his tail, ready for another adventure. I hope that you are seeing a glimmer of the joys of spring, wherever you are too.. unless of course you’re in the Southern hemisphere, in which case, enjoy your Summer, and send it back to us in the Northern hemispheres soon, please!

Blessings & love, Hxx

 

{Photo via Pinterest, sadly uncredited; words by me, Hayley Darby © 2016}