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:

Summer mornings

yellow hammock

I seemed to arrive in my body from somewhere else, as if sleep had released my soul to explore another realm, and on waking, gently deposited me back into a physical form. I first became aware of the loving weight of Leo, (my terrier cross), his chin resting on my ankles; and the reassuring pressure of Platon (my big dog), leaning into my side. I lay perfectly still, not to disturb them, but they can sense changes in my breathing. Leo must have been coiled like a spring, waiting for his signal to jump up and tickle my face with his whiskers, touching noses, and then stretching in a deep play bow, before settling into a down position as he balances on my supine body for a cuddle. He really is the most affectionate little ray of sunshine, and greets each morning with enthusiastic delight; it’s impossible not to start the day with a smile with his happy presence. Platon is a much cooler customer; he slowly stretches out, pushing against me as he extends to his full length, exposing his tummy for a tickle. He is my rock, reassuring and comforting, protective and vigilant, willful, independent, and stubborn, but loving, calming and fiercely loyal.

I lay for a few heavenly moments, enjoying my morning ‘love in’, watching Leo playfully nuzzle Platon, for a few brief seconds before Poppy (GSD/lurcher cross) bounded in, and bounced enthusiastically but haphazardly, onto the bed, landing on top of all of us! She is the chaos to Platon’s calm, the minx to Leo’s amenable nature, the diva of the pack, and she whips the bed up into a frenzy of playful wrestling and lands exhaustedly beside me on the pillow, panting heavily and eyeing me expectantly. By now I am completely awake, there is no chance of drifting back to dreamland, or floating in the ‘hypnopompic’ lucid dream state, I used to search my mind for clues of subconscious understanding. There is no room for wakeful dreaming, my dogs keep me firmly grounded in the present moment, it’s one of their charms, that we are engaged in the simplest pleasures of the here and now. As I lie with these three dogs that have changed my life, I am so grateful every morning, for my pack, and that they found me. Each dog has their own sad story of abuse and neglect, and yet are so loving and trusting, Poppy still struggles trusting new people, but within our family, she is confident and happy, and a little monkey!.

Eventually, I roll over onto my side, feeling the familiar ache in my back which I am now accustomed to, and I snuggle the dogs, tell them how much I love them. I then raise myself carefully into sitting position as they jump up and off the bed excitedly. Platon or Poppy will ring the goat bell that hangs from the door, if Poppy gets there first, the bell often ends up crashing to the floor as she impatiently demonstrates her desire to get into the garden. She leaps around like a slippery salmon swimming upstream, excited, insistent, and ‘singing’ a high pitched tune of frustration, as if demanding I hurry. I make them all wait, and sit in a row as I slowly open the door, reminding them to “perimenete” (Greek for wait), until I am satisfied, and release them like rockets as they charge out, into the morning sun.

We are currently in Greece, our summer home on a pretty Ionian island, where my days start with coffee on the terrace in my pyjamas and sunglasses, as the dogs sniff around the garden for evidence of our nighttime visitors. I sit noticing how many apricots have fallen from the laden tree, as I nurse a cappuccino and the dogs linger around the table in anticipation of their share of biscuits. It’s our morning ritual, as I dip cantuccini in my coffee, and feed them the Greek version of plain ‘Rich Tea’ in exchange for kisses (nose touches) and other good behaviour (sitting, lying, chins on my knee). As the morning warms up, I check my online media, and the dogs stretch out in the sun, playfully wrestling, gently until Poppy goads the boys into a pack tornado, that whirls around the garden, twisting and bouncing, occasionally yelping, when Leo bounds back to me for protection (he has an injured leg that can’t cope as well with his boisterous siblings), and finally Platon and Poppy will flop into the cool, fragrant earth under the fig tree. These are our summer mornings, and I savour every single moment, listening to the crickets (yet to fall asleep), birds chattering in the trees, and the occasional goat bells tinkling over the hill.

This is my happy place, and I commit these precious, golden moments to memory, stored up for rainy days or difficult times ahead. I feel even more blessed to be here this year, following emergency spinal surgery in January. It was my motivating goal; to be well and fit enough to drive the dogs back again, which I managed with the help of a friend (my surgeon has insisted I no longer undertake the journey alone). I am still recovering, but as I reflect on my progress, I’m proud of my journey, and so grateful to have made it to this place; where I can sit in my hammock swing, watching pairs of butterflies dance around the garden, smell the potted herbs (basil, mint, coriander) that scent the terrace, and watch the dogs lie contentedly under the dappled shadows of the fig, peach, apricot, orange, lemon and apple trees. I hope that wherever you are, you notice the little things too, because trust me, the little things really are the big things! Love & blessings, Hxx

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

Blue skies & scars


Good morning everyone! Today I woke early as the sun crept round the blind, sneaking in to the room to call me from dreams that blend reality with possibility and a generous hint of the ridiculously absurd. I landed on the pillow with a crumpled smile, and found my thoughts leaping into the day ahead, listing the tasks I hope to achieve and the time I anticipate they will take, searching for the opportunity for a walk on the heath, before sighing and getting up for coffee.

It’s a beautiful morning in London; the spring sunshine spills through the kitchen window, warming the herbs that reside on the sill, releasing a fresh fragrance to be inhaled deeply with eyes closed in appreciation. The light on my shoulders is deliciously warm, and encourages me to sit on the countertop and steal the rays from the bowl of lemons and assorted cooking utensils, as they curl round my legs and creep up my décolleté. I sipped my latte and smiled at the sky; an endless blue stretching into the distance above the rooftops, with only a single vapour trail, like a small scar to mar its perfection.

I glanced at the scar on my knee, a fairly neat white line that holds a story, and wonder about the scars on my heart, everybody’s heart, how would they look if we could see them? I suspect I would pick at the edges of the latest wounds, impatient for healing but unable to ignore the regret and disappointment wrapped up in their memory. I’m resisting the temptation, most of the time, but admit that occasional moments find my mind in the ‘if-only’ territory. I wonder how long will it take that particular hurt to fade into a smooth white line, and become ‘just another story’, something that happened to the girl I used to be?

And I smile at the blue sky, because however long it takes, I already know that that particular scar will always be the start of the next adventure, the one that whispered ‘follow your dreams, you’re the author of your story’. So the crazy idea that morphed into possible plans has now become more probable than mere potential, and I have a blessed opportunity. I also have a contract to sign, and a ticket to buy, another white scar to trail across the sky. Meanwhile that list still persists, and the clock is ticking, but it’s OK, because I’ll make time for a walk on the heath anyway, after all, chances become more precious when they’re numbered don’t they?!.

Have a gorgeous day everyone, and remember your scars are souvenirs of your journey, but you’re still the author of your story. Blessings & love, Hxx

{Photo sadly uncredited, via fatallyflawedpalate.tumblr, words: Hayley Darby © 2013}

Focus on your journey.

Don’t compare your life to others’, you have no idea what their journey is about!

NB: That includes not comparing your physical presence too, we are all beautiful in our own wonderful way, irrelevant of body size/shape; just to curtail any critical comments in that dept! Focus on where YOU’re going & stop concerning yourself with what you think of other people and their choices! Comparison is the thief of joy, enjoy your beautiful journey and appreciate how amazing it really is. ♥ Hxx

The road ahead..

As I prepare for bed, I find myself contemplating the twists and turns of the road travelled in the journey of my life. There have been moments of great joy, beautiful scenery and sunshine, yet there have been seemingly endless dark stretches where the fuel of hope was harder to find. The amazing thing is, the road continued despite my fears and apprehension, although it was dark, I managed to stay on track, and gradually the light came back, like the dawn of a new day. It’s amazing how different twists reveal by turn more beauty, love, happiness with patches of difficulty, and heartbreak. In the same way the light of our moods change, as we navigate our route through unchartered territory. I guess what this metaphor is trying to say is that we must enjoy the sunshine and the wonderful scenery, and fill our hearts with the memories of love and happiness to draw on for hope when it gets dark and we feel like we’re losing our way; because at any moment a change in direction can bring us back into beautiful terrain. However dark it gets, the sun will always rise again, and in the meantime it might help to turn on the radio, and try to sing along, for courage until we emerge from the darkness again. Good night, Hxx

{Photo sadly uncredited, words by Hayley Darby 20.July.2011}