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: 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:

Dear 2016..


Dear 2016,

You have been brutal, by far the most difficult, painful, expensive, terrifying, sad and challenging year of my life. You commenced with life-changing, emergency spinal surgery (x2); and culminated with the heart-wrenching demise of my beloved father, cruelly snatched from life, so suddenly and unexpectedly. I have gritted my teeth determinedly, bitten my tongue patiently, and cried several oceans, unreservedly. My body aches daily, my mind worries anxiously, and my heart is repeatedly smashed to smithereens as the waves of grief crash over me. Yet, I am grateful, you have been a year of my life, I have learnt many painful lessons, and I am ready for 2017.

You have been a year of struggles and loss, but loving light has pierced the darkest depths of despair. Every day, as my world fell apart, the sun still rose, and the world kept on turning, even though I had wished it would stop and let me step off, momentarily. I noticed sunlight dancing gracefully in the leaves of a tunnel of trees, as I drove from the hospice, blinded by tears I couldn’t curtail. And once as I crested the brow of a hill, overwhelmed with sorrow, strong shafts of light poured through the clouds, reaching down from the heavens to steady me. When I felt hopeless, rainbows magically appeared to comfort and encourage me, and when I was tired and defeated, sunsets gently soothed and nourished me.

Amongst all the difficulties, angels have emerged to help, support and care for me, friends and family who held me when I fell apart, and picked up the pieces of my life as they lay scattered around me. I have been enveloped by kindness, as I learned to walk after surgery, and again as I learned to walk in a world without my Daddy. Dear friends have shared their understanding that the gaping hole in my life will never be healed, but that I will come to accept its presence, and learn to live by filling it with never-ending love and happy memories. I am eternally grateful for these loving souls that have shared my journey.

My mornings greet me unfailingly with the wet nosy kisses and joyful tail wags, of unconditional love. My dogs have been my best medicine, strongest motivators, and most comforting, loyal companions, through everything. Because of them, I have found the strength to get up and embrace the day, and found myself admiring beautiful dawns, when I thought I wanted to hide in sleep. They have licked away my salty tears, snuggled lovingly into my broken body, and found smiles in my face when I didn’t think there were any. They have silently acknowledged my pain and let me bury my face in their warm furry necks to weep, sought me out for snuggles and cuddles, and accepted the changes they couldn’t understand, patiently. Leo is such a loving boy, and continues to fight valiantly against the life threatening disease you bestowed upon him. Poppy is becoming affectionate and sweet, learning to trust and settle, despite the many moves and upheaval. And Platon remains my rock, protective and patient, unswervingly loyal and devoted, even when earthquakes unnerved him.

2016, you have been horrible, the world has lost some amazingly talented souls, you enabled Brexit, and voted in a disastrously dangerous choice of American president. Many desperate refugees have drowned fleeing war torn countries, terrorists have ripped apart the lives of many and their families, and atrocities continue to be inflicted on innocents as their homes are destroyed by militants. The world is full of hostility and cruelty, it is plagued by anger and swamped in sorrow, but light still shines through the darkness, beauty blooms amidst despair and misery, courage clings on through adversity, hope remains steadfastly, and love is still stronger than anything. Please tell your successor 2017, to bring it on, I am ready!!

Blessings & love, Hxx

{Photo credit: The talented, Maria Koutala, Kefalonia. Words by Hayley Darby ©2016}