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A Fox Lake Blog

The Physioterrorists

When you are unable to breathe on your own, with diaphragm and intercostal muscles paralysed, you are also therefore unable to clear your airways, meaning that mucus builds up in your lungs and has to be cleared out otherwise you will drown in bed from your own secretions.  There were a number of ways this was done to me every day, twice a day – the euphemistically titled cough ‘assist’, physical airway clearance and hour long sessions with a nebuliser added to my ventilator.

It was one of the main jobs of the physios to perform these on me which they did with enthusiasm, panache and the kind of sadism I had never encountered before and never wish to encounter again.  The whole process was made even more disturbing by the fact that they were all, male and female, impossibly good looking whilst apparently harbouring all the empathy of a fully paid up, card carrying psychopath.  The first two ladies who turned up at my bedside could easily have made a living on the catwalk.  Tall, slender, beautiful, hair and make up immaculate, they smiled angelically at me.  “Hello, Tara” they chimed in unison, “We’ve come to help you feel a bit better” and with that they descended on me.  Clearly, as well as beautiful, these ladies were regulars at the gym as they threw me around casually, pounding on my ribcage and back, flipping me almost upside down and jumping on me to loosen all the sticky snot in my lungs so that they could then attach more tubes and suck it out. (Not personally, you understand. They had a machine for that bit). They used words like “percussive compression’ as they basically punched me under the ribs, ‘postural drainage’ as they flung me around and the aforementioned cough ‘assist’, which was my favourite.  This involved sticking a tube down your throat far enough to activate your gag reflex and start you coughing and spluttering and bringing all the gunk in your lungs up into your mouth where, again, it could then be suctioned out.  Once all this was done, they would attach a vial of nebuliser to the tracheostomy tube and leave, still smiling. 

(A nebuliser converts a liquid drug solution into a fine spray or mist which can then be inhaled to help the airways remain clear.  See – fun and educational!)

I very shortly began to dread the arrival of the physios, despite the fact that they were responsible in large part for keeping me breathing. It didn’t help that my first physio sessions were whilst I was in ICU and largely being held in an induced coma so I didn’t know what the hell was going on.  As far as I was concerned at that point I was just being randomly and painfully assaulted by oddly beautiful strangers although, given my chest infection and subsequent pneumonia, their administrations would have been both particularly vigorous and critical to my survival.  Later, conscious in High Dependency, I was all too aware of what was coming so I had the joy of anticipation to add piquancy to the whole experience twice a day.  

Looking back, I remember that, for me, being in such an extreme position health and ability wise hugely heightened my emotional and physical reactions.  As a result the smallest things, whether positive or negative, had a disproportionate effect. For example, I hate artificial banana flavouring but, fed through a tube straight into my stomach, I had no control over what was put in it.  One of the things – my liquid dessert, as it were – was banana flavoured.  Whilst I couldn’t taste this on the way down since it was bypassing my tongue, it also had the unfortunate effect of repeating on me gently for an hour or so afterwards and THAT I could taste.  Having this minor, ironic inconvenience actually depressed me.  It was as though things were bad enough that something tiny would feel like the last straw.  I was also getting my bloods taken several times a day and I rapidly grew very annoyed by the pain of having needles repeatedly stuck in my arm and hand on top of everything else.  I have no idea why they couldn’t have taken the blood from my legs and feet where I couldn’t feel a thing but, again, with no voice, I had no power to make this suggestion or any others consisting of two words, the second of which would be ‘off’.  Luckily, the converse was also true.  After two weeks of tasting nothing other than faint, repeating, artificial banana, I remember a strawberry flavoured thing I was given to suck to moisten my dry mouth.  The flavour exploded over my parched and deprived tastebuds with an extraordinary vividness, as though they were tasting for the very first time.  

In this febrile and helpless state therefore, the highly physical and painful administrations of the physios seemed even more shocking.  Once  properly conscious and able to converse with them, I was not surprised to learn that they referred to themselves as ‘physioterrorists’.  It was an apt moniker. 

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Voice recognition fail:  ‘Let’s go for Thursday’ became ‘Let’s give it to you on Thursday’ #awkward

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A Fox Lake Blog

Pass the Spoon

After my weeks in intensive care, where I had decided to keep everyone on their toes by first being more of a broken jigsaw on the operating table than anticipated, then by trying to rip out all my breathing and feeding tubes and finally by contracting a chest infection that turned into pneumonia, I was taken down to the High Dependency ward.  Before I left, finally actually conscious for the first time in a fortnight but still as high as a kite, a collection of people pitched up at the foot of my bed to say goodbye.  Most of these people, it seemed, had been part of the operating team under my consultant and all of them, including the consultant, said something along the lines of “Well , you’re looking a LOT better.  We were quite worried about you there for a while”.  I didn’t have a mirror but it wasn’t a huge leap to guess that after two weeks in an induced coma and all of the above adventures, none of which included a shower, I was looking pretty terrible so I must have been looking REALLY terrible earlier in the fortnight.  I soon concluded that such British understatement as “we were really worried about you there for a while” from seasoned professionals to patients in intensive care basically translated as “Bloody hell, are you still alive?  Who knew?  That’s ten quid I owe Figgins.”

So it was that, newly imbued with my near brushes with death, I felt a sense of hope and relief as the orderlies body boarded me into my new bed and then trundled me off to the heady uplands of High Dependency.  The HD ward is a halfway house between the ICU and general wards for people who are judged not so imminently likely to turn up their toes that they require one on one 24hr supervision but nonetheless are still poorly enough that they need close, medical supervision and a certain amount of kit.  In my case the HD ward had four beds and two specialist nurses on duty at all times.  The nurses’ station was at one end of the ward and I was wheeled into the space closest to it as the one to keep an eye on if there wasn’t to be a tedious amount of paperwork.  It was from this space, for the first few days, I proved to be a complete pain in the arse.

First, I was still unable to speak or eat due to both my trachea and oesophagus having tubes down them but I was now conscious more than I was unconscious.  The last time I had been properly conscious was before I had so inconveniently hit the ground from the horse so I had never had my brain operating in an environment where it couldn’t feel my body.  Since my brain couldn’t feel my body touching any part of the sheets but it could feel the nerve pain in my feet, it, not unreasonably, concluded that I wasn’t therefore touching the bed and from that it was short, cognitive jump to the conclusion that I had been hung upside down over it.  This may seem crazy and yes, I was still full of morphine at this point but anyone who thinks it’s entirely crazy has clearly not been slung upside down and jumped on by physios to clear their airways.  I took umbrage at my imagined predicament but, unable to express my concern and therefore have someone explain that I was in fact horizontal and not trussed up like the Spanish Inquisition’s next project, I could only thrash one arm and my head about and refuse to go to sleep.  This did not make my point very lucidly.  I did this for the first 24 hours. 

For the second 24 hours I hyperventilated.  My new ventilator was much more powerful or turned up higher than the one I’d had for weeks in the ICU.  Therefore when I eventually gave up being a loony and settled down I discovered that my lungs were being pumped full of air like a farrier’s bellows.  After weeks of not having them filled with air, this was alarming and disconcerting

(A small aside on ventilators.  The main aim, understandably, is to keep you appropriately oxygenated and blood oxygen levels are carefully monitored accordingly.  However, there is a world of difference between ‘appropriately oxygenated’ and a lungful of air.  I can tell you from experience that a nice nurse can be pointing to your safe 98% oxygenated number on your monitor and you can be flailing like a landed fish with barely any air in your lungs and your brain screaming at you to breathe.  The problem with breathing is that, if you try to take over, what you actually do is fight the ventilator and stop it from getting any air into you.  so, ironically, you actually then get nothing and start suffocating.  I heard one nurse crossly telling a fellow ICU patient also on a ventilator and struggling to breathe that he was and I quote “doing it wrong”.  Personally, I just couldn’t stop myself breathing all together so my ventilator and I reached a compromise where I worked out that if I just breathed *really* shallowly this would allow me enough ‘breathing’ to keep my brain from fighting me and little enough that the ventilator could put air in. This was, to put it mildly, a horrible struggle and honestly, the most difficult thing I encountered in this whole experience.)

Where was I? Oh yes, having my lungs filled with air like a party balloon. I objected in my customary fashion – by thrashing one arm and my head about and refusing to go to sleep. Eventually someone worked out what was going on and turned it down a bit.

In my third 24 hours I made a valiant attempt to die which nearly succeeded.  In ICU and HD patients are attached to machines monitoring their essential functions and these machines emit a cacophony of beeps at all times.  ICU is a noisy bedlam and not at all the quiet, restful place usually depicted on the telly. Even now the sound of a beeping machine brings me out in goosebumps. These machines are also equipped with alarms to attract attention when one of the vital things they are monitoring hits a glitch. 

In my case the alarm on my ventilator was not working – a fact I discovered on my third night at around 3am when the tube connecting me to the machine just dropped off.  You’d think that something so important would be slightly more firmly attached but it appears not.  I awoke abruptly, suffocating.  The lights were off in the ward, save for around the nurses’ station, where our two nurses were chatting away quietly.  I was in the darkness and, turning my head, I could see that both of them had their backs to me.  I frantically waved my arm and desperately tried to make some noise but, to function, the voice box needs air running over it and mine had none thanks to the tube down my trachea.  I continued to suffocate.  The conversation between the nurses murmured on.  I can’t remember what they were talking about now but I can remember that it was inconsequential compared to the fact that I was completely unable to breathe.  I suppose, to be fair, most conversations would be unless they were of the “Oh crap, this one’s not breathing.  Quick, reattach the tube” variety. Anyway, flat on my back, I remember staring at the ceiling and banging my working arm against the bars of the hospital bed trying to attract their attention.  Part of my brain was gibbering with fear.  Another part was unable to process the fact that, after all I had survived, I was about to die 15 feet away from help from something so utterly stupid and another part was coldly calculating that I had been without air for about 90 secs and, in my weakened state, I probably didn’t have much more than another 60 before I passed out from lack of oxygen and went back to looking like I was peacefully asleep when, in actual fact, I would be very much unpeacefully dead. I kept banging my arm against the bars.  It made a dull thudding noise that could not be heard over the chat. An overwhelming sense of utter hopelessness swept over me combined with pure fury.  I kept banging my arm and, suddenly, the nurses’ chat reached a natural pause.  Then I heard “What’s that noise?” and one of them turned round, peered into the darkness and, thank God, spotted my waving arm.  She made her way over where, presumably she saw the machine flashing something (but very much NOT making any alarm sounds) and quickly reconnected the air.  I cried and gibbered for quite a long time afterwards.  The nurse kindly stroked my hair and promised that they would keep a very close eye on me for the rest of the night. 

I made it through without the tube falling off again but at the morning’s ward round my escapade was a hot topic.  Now, those of you who have not spent a lot of time in an NHS hospital are probably imagining that the solution was that my murderously faulty ventilator would be retired to a large dustbin stat and replaced with one that was much more reliable.  Hahaha.  Those of you familiar with the NHS will already have guessed that the reason that one so faulty was still there at all was because there were no shiny, new ones to replace it and no money to buy them with either.  So the nursing staff came up with a lateral answer that was pure brilliance – practical, effective, entirely cost free and quick.  They bandaged a metal dessert spoon into my hand so that when (not if, you note, when) the ventilator disconnected itself again I could bang the spoon on the metal bars of my bed and this would make a much louder noise than my fist. 

The following night I drifted off to sleep, one arm resting outside the covers and ending in a vast swathe of crepe bandage within which nestled the spoon.  It had to be bandaged in because I had no grip in my hands at the time so couldn’t grab and deploy my new alarm at will. Sure enough, in the depths of the night, I awoke again gasping for air.  I clanged my spoon loudly against the metal bars and was reattached within seconds.  I felt great relief and and a flood of positive emotion towards my trusty spoon.  Presumably my fellow ward mates, rudely awakened out of their slumber, felt entirely the opposite way.  I’m sorry to relate that my spoon and I slept together happily for the rest of the week and, during that time, I woke them all several more times with my impromptu alarm.  It occurs to me now that I’m probably one of the few people around who owes their life, in part, to a dessert spoon. 

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A Fox Lake Blog

The Beginning

In which the author attempts her first (and likely to be last) blog/book. I’m going to do this in weekly instalments which will be the only way it mirrors anything by C Dickens. Oh and it won’t be chronological either. I’m just going to post these as I write them and I’m going to write them as the mood takes me otherwise I’ll never get any of this done at all. 

So, shall we?

Foreword

Ah, hello, dear reader.  Let me welcome you on board.  A few things before we start. First, a fairly large proportion of this book was written using voice recognition whilst the hands were still not capable of typing.  Proponents of this technology will tell you that VR learns and improves the more you use it.  Oh, it learns all right.  What they don’t tell you is that it actually learns a sense of irony and a sense of humour – both of which you could well do without.   My VR system started this book refusing to recognise the words “voice recognition”, got into its stride by randomly inserting words that don’t exist (anyone know what or who ‘impax’ is?) and triumphed by inadvertently creating the title of this book. When I took my eye off it for five seconds and then realised it had written entire paragraphs of gibberish, I would volubly express my frustration with it/life/my disability and VR gently tapped out “a fox lake” in response.  It seems to sum up the situation nicely.  It also responded to any noise the dog made in the study, meaning there are probably entire passages in here written by a small spaniel – sorry about that.

Second,  I must apologise in advance for any dodgy chronology.  When I first started trying to record my experience in some way I could only use one knuckle of one hand.  As such, I took to Twitter as my main medium of choice, figuring that the trusty knuckle could just about cope with 140 characters, as it was at the time.  I then used those tweets to jog my memory to recreate in greater detail what lay behind them for this book.  Sometimes they follow sequentially, sometimes they don’t.  Feel free to shout “A fox lake!!” at me as often as you feel necessary.




Karma vs Gravity

All right, let’s get the unfunny bit out the way first.  I promise I have tried to make this bit amusing but even I can’t find any way of making paralysing yourself from the neck down hilarious so let’s at least make this quick.  On July 29th 2014 I fell off a horse and landed awkwardly and unluckily on my head at an angle that snapped my neck at C6/7, dislocated 13 vertebrae and bent my spinal cord into an ’s’ shape.  It was this last bit that did the paralysing.  It is, in fact, perfectly possible to break your neck without paralysing yourself as the vertebrae of the spine will heal in the way all the other bones in your body do.  The spinal cord, however, is effectively an extension of the brain with millions of nerves that carry signals from the brain to the rest of the body.  Damage that and you cut the signals off.  The level at which you damage the cord also governs what functions are affected and from where.

That said, every spinal cord injury or SCI, is as individual as a fingerprint.  Whilst injury ‘levels’ can be the same, the extent of the damage can be as myriad as the nerves so different people are affected in different ways.  All of us though get most of our autonomic functions knocked out from the point of the lesion – the ability to regulate body temperature, blood pressure, sexual function and our bowels and bladders.  In the case of high cervical injuries, people are also unable to breathe on their own and must spend their life on a ventilator.  For those that do rely on machines to breathe, you have my utmost respect.  I was on a ventilator for five weeks in hospital and I rate that experience as the most horrific and traumatic part of my injury.  Last but by no means least, SCIs are often accompanied by near constant and debilitating nerve pain which can make their sufferers suicidal more than any other aspect of the injury.  

I ended up classified as a C6/7, incomplete (meaning part of my spinal cord is still intact) quadraplegic (meaning legs and arms are both affected).

So, yeah.  Not funny.  

Onwards.





Whatsherface is trying to kill me!

In Lady Chatterley’s Lover, D.H Lawrence wrote that “a little morphine in the air…would be wonderfully refreshing for everyone”.  ‘Refreshing’ is one word for it.  It’s not the word I would use. I’d go with makes you batshit crazy but that sort of command of English is probably why this book is not going to be considered a classic of the language. Whenever they pumped morphine into my system I’d start to see mist rising around me and filling the room.  At times I was quite lucid about my hallucinations. I clearly remember lying in bed looking at what I could see of the ICU and seeing the nursing staff surrounded by the paraphernalia of an old-fashioned sweetshop. I figured that this was an hallucination since, although I was little experienced in intensive care units, I was pretty sure that large jars of lemon bonbons and strawberry shoelaces in boxes were not the way the NHS would normally stock its crack unit, no matter how bad the funding crisis had got.   Likewise, I knew that no matter how much I loved horses, it was also highly unlikely that they had bought mine into the unit to see me and then left them to wander up and down the beds without any supervision.   Ditto the random arrival of a cow with pink spots.   

Other hallucinations were more sneaky. They initially disguised themselves as entirely prosaic. In one I had been moved up onto the top floor of the hospital, into a ward very like the one I was already in except my bed was in a different place.  Then the staff decided to throw a large birthday party and to that end spent a lot of time chattering about what they were going to wear, how they were going to do their hair and bringing in things with which to decorate the ward.  I observed, agog, as various nurses carried into the ICU the essentials for a birthday party including a large plastic palm tree, a gigantic pair of oversized scissors and a 10 foot plastic banana.  Also, in a festive touch, they hung up bunches of frankfurters along the ceiling.  The party was just about to get going when the air ambulance arrived. Somehow I was now by the doors of hospital and I could see that it was pouring with rain outside.  The helicopter came in like something out of Apocalypse Now with its rotor blades whirring in slow motion against the lashing rain and wind. I could hear conversation about who was on board and they were saying that somebody had broken their neck. At this point a nurse was dispatched to take the gigantic scissors out of the way as this was considered poor form to be the first thing that somebody with a broken neck would see on entering the hospital.  I remember finding this hilarious.  I believe the scissors were hastily concealed in the toilets – obvs. Where else would one hide a gigantic pair of oversized scissors in a hurry?

There was, however, one thing that seemed to happen repeatedly whenever (I thought) a certain nurse was on duty, which was that I was being given drugs that did very weird things to my vision.  Everything around me began to look like an episode of The Simpsons.  Blonde hair became violently yellow and skin tones turned a creepy shade of green/purple so that it felt like I’d woken up in an aliens’ comic-con of Dolly Parton impersonators.  Now, I’m quite sure that the coincidence of this odd drug effect and this nurse’s shift was just that – coincidence – but I became convinced that she was trying to kill me.  I tried desperately to communicate with my mother about this terrifying fact – a feat that was severely hampered by my mouth being full of tubes for feeding and breathing so I couldn’t speak and being completely paralysed from the chin down, which made me a terrible mime artiste.  Realising, however, that I was clearly desperate to communicate something,  she and the matron hatched an ingenious plan to bring me a spelling board where they could run a finger along the letters until I frantically nodded my head and by this method allow me to spell out my important news.  

So, off we set; Mum running her finger along the letters until she got to ‘O’.  I nodded.  She started again.  I nodded at ’N’.  Then we hit an unforeseen problem which was my mother’s over-keen urge to help by second-guessing what I was trying to spell out rather than, well, letting me spell the bloody thing out. “On?” she hazarded, “On top of the cupboard?”.  I shook my head frantically.  “On the shelf?” I shook my head frantically again.   “On the floor?”  I rolled my eyes.  “On the bed?!” I attempted to gesture with my head back to the spelling board.  She interpreted this, incorrectly, as a nod.  “On the bed, where, darling?” she asked kindly and helpfully, whilst I harboured dark thoughts about killing her.  I shook my head madly again and inclined it at the board once more.  Mum started to run her finger along the letters.  I chose ‘E’ to finish the word ‘one’.  Mum decided this was a new word to go with her self-selected preposition.  “On each?” she hazarded.  “On everything? No, on every?”.  I gave her my hardest stare.  And so we went on for probably the best part of an hour.  Frustratingly and painstakingly I finally, finally managed to spell out my desperate cry for help – ‘One of the nurses is trying to kill me’.  The matron and my mother looked at me in shock.  The matron, rallying first like a true professional, asked me the pertinent question “Which one? What’s her name?”

It was at this point (and only at this point) that I realised I had absolutely no idea.  Unsurprisingly, this put a crimp in anyone being brought to account.  I’m afraid I still don’t know her name to offer an apology but I DO know that morphine makes you bloody paranoid.





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