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A Fox Lake Blog

Somewhere Inside Me There Are 21 Meals MIA.

There’s nothing like being in hospital to bring home to you just how much you are an organic being.  Hospitals and all the professionals in them are extremely interested in any secretions you have but most of all they appear obsessed by poop.  Every day a record was taken in the unit of not only whether we had pooped but of what size, colour, consistency and volume said poop was.  Sizeable deposits were greeted by murmurs of approval, sometimes even of congratulation, whilst, in contrast, pitiful attempts were accompanied by the shaking of heads and sorrowful looks.  To be fair, it IS pretty important, as it was explained to me, that spinal patients are not allowed to back up, as it were, since being full of waste can, eventually, cause a toxic reaction, a poisoning from the inside out.

So imagine the disappointment when one day I failed to produce anything.  The nurses on duty noted this failure on their chart, shook their heads sadly at me and let me know, by voice and deed, that they felt let down by my performance. 

The next day came.  I failed to produce anything again.  They tsked at me.  “Are you eating properly?” I was asked.  “Er, yes” I replied, if by ‘properly’ you mean with one spacca hand and hospital food”

There was muttering as they consulted.  “We’ll give you another day”  I was warned “But if you don’t do anything tomorrow you’ll have to take a laxative.  Make sure you eat.”

I duly consumed another three meals.  The next day rolled around.  Nothing.  More shaking of heads and noting on the chart followed by the production of my first ever sachet of laxative – some orange flavoured powder entitled ‘Movacol”.  This was mixed with water and down it went to do battle with my recalcitrant colon. 

“How many of these am I going to have to take?” I enquired, not being a fan of half pints of artificially orange flavoured liquid at the best of times. “Another one tonight should sort you out nicely by the morning” I was promised. 

The next morning rolled around.  Nada. I was now on my fourth non productive day and twelve disappeared meals.  Reinforcements, in the form of the doctor on duty, were called in.  “Up the Movacol to two sachets this morning and again tonight” he said.  “What happens” I asked “If that doesn’t work?”.  “Oh it’ll work” he informed me “and in the unlikely event it doesn’t we have a nuclear option available to us that never fails.”  Everyone laughed knowingly at this except me. I eyed them all darkly whilst I imbibed a whole pint of fizzy, orange liquid.  I ate three more meals.  I drank another pint of FOL.

Day five in the house.  Nothing.  The disappointment had now morphed into genuine concern tinged with puzzlement.  My Movacol tally was at six sachets (from memory the blurb on the back promised surefire results after two), I was now fifteen meals down without result and people were starting to ask me questions about how I was feeling (fine, thanks), did I have tummy ache (nope), was I experiencing any signs of autonomic dysreflexia (luckily, no). 

(Here comes another science bit – autonomic dysreflexia is a potentially life threatening condition common to those with SCIs. Devoid of proper sensation to identify problems – such as being chock full of poop – the body can react by blood pressure rising.  Symptoms usually include a crushing headache and can involve shivers, chills and nausea.  If the offending issue, which can be as simple as too tight clothing, is not dealt with then the blood pressure just keeps on rising and you are then into a medical emergency with strokes and and death being potential outcomes.) 

My temperature was taken, my eyes were peered into, my FOL serving went up to three pints (six sachets) that day and my card was marked as an oddity.

Day six.  Nothing. Three more meals, six more sachets of Movacol, administered now with an air of desperation. 

Day seven.  Everything was fine.  Just kidding.  Once again, nothing.  The doctor was called once more and my eighteen vanished meals along with my matching eighteen sachets of the now ironically named Movacol recounted.  The doctor looked at my chart, then he looked at me, then at he looked at my chart.  “Well” he said, with the air of one taking a hard but necessary decision “I guess we are going to have to Picolax her.”

There was an audible gasp from everyone in the room except me.  I understood from the reaction that this must be the nuclear option referred as almost never resorted to earlier.  The Cold War with my colon was over and the gloves were coming off. (Metaphorically, obviously.  The LAST thing you’d want to do as a medical professional in this situation is take your gloves off.) A nurse was dispatched to the pharmacy, presumably with a locked suitcase chained to her wrist, to acquire some Picolax.  She returned, bearing the box gingerly, as well she might.  Picolax is the stuff they give you to ‘empty the bowel’ before something like a colonoscopy.  Given we have multiple metres of bowel inside us, this is already quite an impressive production of poop – one that would score a full 10 out of 10 on the poop chart and a standing ovation from the nursing staff.  If, however, like me, you are currently storing six days of poop in your bowel, well, you could probably decorate the room.  I read the instructions on the back.  “Add this sachet to 150mls of water and dissolve.” so far, so normal.  “The water may become warm” WHAT??!!  Holy cow, what the hell is in this stuff that its chemical reaction with good, old H2O is enough to produce heat?  “I’m not sure…” I started.  A nurse held out the, presumably warm, glass “Drink” she instructed.  I drank and my status changed.  Pre-Picolax I was a constipated patient.  Post-Picolax I am now an unexploded bomb.  The nurses edge nervously towards the door.  “How long will this take to work?” I asked, worriedly.  “We don’t know” they replied, equally worriedly “But we would advise staying in your room”. 

I sat in my room.  The hours ticked past.  The whole morning went past.  Occasionally someone would poke just their head round the door, making sure to keep the rest of their body behind the protective barrier.  My stomach didn’t even gurgle.  At lunchtime, bored and hungry, I wheeled myself down to the cafeteria.  Word had spread and I was given a whole table to myself.  I ingested my 20th meal without result and trundled back to my room. The afternoon ticked past and it got to 3pm, my physio appointment time.  Since I attended my physio sessions religiously as they were one of the few things that were keeping me sane, I waited until the coast was clear and shoved myself as rapidly as I could to the gym.  I was just about to clamber out my chair onto a plinth for my session when my pursuers caught up with me, bursting in with the information “She’s been Picolaxed!”  The reaction was instantaneous. Physios threw themselves protectively across their patients or behind the nearest piece of equipment and finally I understood the etymology of the word arsenal.  “Get her out of here!!” bellowed the Head Physio, presumably with horrific visions of exactly how many nooks and crannies there are on a leg press to have to clear the effects of Picolax out of.  My wheelchair was firmly manhandled at speed back to my room and deposited there with firm instructions NOT to leave it again.  

Evening came.  Nothing.  By now I was a cause celebre of the whole unit.  Fellow patients pointed at me through the glass wall of my room, laughing; visiting small children, held firmly by the hand, were brought to see the Picolax Lady and last but not least, a stream of medical professionals dropped by to see with their own eyes the patient that refused to poop even after Picolax.  Morosely, I ate my 21st meal and then had to work very hard to persuade some staff to help me get ready for bed.  

Day eight.  Morning.  FINALLY, to everyone’s immense relief, not least of which was mine, I pooped.  Unexcitingly, normally and as if the last seven days, eighteen sachets of Movacol and one of Picolax had never happened.  Colon 1, Picolax 0.

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A Fox Lake Blog

We Can Still Hear, You Know

One of the main things about being in a real hospital as opposed to watching it on the telly is that you are there being ill/seriously injured/at your most vulnerable whilst being in extremely close proximity to lots of other people who are in the same boat.  For some reason this never happens to people in programmes; they always seem to have their own, spacious, private, quiet and well appointed room.  Here they are visited only by their loved ones and sympathetic medical staff, the latter of which do not look like they have just done a 12 hour night shift and can’t wait to go home.  Being an only child and having, since reaching adulthood, then foolishly elected to sleep with just one other person at a time, spending 24 hours a day but particularly the nights, with at least three other people, was quite difficult for me to get used to.  My acclimatisation was not aided by the lack of privacy.  I tried out three different wards during my time at the NHS’s pleasure, each one containing me and three other inmates.  The beds all had flimsy curtains that could be drawn around them but each bed was only a few feet apart from the others and thin curtains do not stop the dissemination of sound or, worse, smells. So, whilst it was true that people could not actually see what was going on in a bed, the visual lack could easily be made up for in vivid imagination fuelled by the other emanations for the senses.  

At first, new patients try to preserve some sense of dignity by speaking in lowered tones but after a few days they cease this futile struggle, recognising it for the lost cause it is when everyone else around them is discussing their most intimate bodily functions in ringing tones.  I learned this lesson early on when one of my ward mates was a paraplegic lady who had come into hospital due to chronic constipation.  Many years post injury due to a car crash, she was both an inspiration and a warning to a newly injured patient like myself.  The inspiration came from her independence and her cheerful disposition, the warning from her condition.  As I lay opposite in my bed I became an involuntary front row audience to her drama.  Several times a day a doctor or nurse would bustle in and enquire loudly as to whether she had had a bowel movement yet.  For the first few days the answer to that was ‘no’ so then there was an ongoing discussion about laxatives, diet and exercise.  Later, after she had been plied with various noxious substances and they started to take effect, she developed a violent flatulence which she was helpless to control and which was then also discussed loudly although, to be fair, in these conversations the medical staff could have been shouting just to be heard over the noise. After this stage she then had to clamber out of bed and visit our attached bathroom, into which she was accompanied every time by a minimum of three people who went with her to assess performance or lack thereof.

During my time in hospital my fellow inmates were both a source of support, company and reassurance and an infuriating annoyance, depending on what they were doing at the time.  My first memorable neighbour was one I christened The Fruit Lady.  I encountered her after my first few days in the high dependency ward – you know, the one into which I arrived, refused to sleep for three nights, had two midnight panic attacks, nearly suffocated and then took to banging a spoon against the bars of my bed in the early hours for the best part of a week.  I shudder to think what they called me.

Anyway, The Fruit Lady was so named because one evening she took to calling out for fruit in the middle of the night.  This was done loudly and unspecifically but very repeatedly for several hours.  ‘I just want some fruit’ she pleaded, ‘Please can I just have some fruit?’ and ‘Fetch my daughter, she’ll get me some fruit’. With the experience I later gained about the effect of an infection and high temperature on elderly people (a carer once told me that she realised one old lady was suffering from an infection when she arrived to find her sitting in bed clutching a feather duster.  When asked what the feather duster was for the lady replied, matter of factly, ‘To hit the crocodiles with.’) I can now guess that she was probably delirious but only a week or so conscious at the time I was torn between feeling immensely sorry for her and just wishing that someone would give her some damn fruit so we could all go to sleep.  After the second night of fruit calling The Fruit Lady was finally wheeled in her bed out into the corridor where her pleas could still be heard at a distance.  Around 5am the calling stopped.  Later that morning I asked the nurse on duty whether The FL had finally received her fruit.  “No,’ she replied ‘She died.’  It was a sobering reminder that one minute you can be calling for fruit and the next dead as a doornail.  The gap between one and the other is much thinner than we think and nowhere so much as in a hospital.

A small aside on the thinness of that veil – a brief chat with some nurses revealed that many of them had had weird experiences around dying patients or in wards where people had recently died. One told me of sitting late at night with one elderly patient at the end of her life who had been muttering unintelligibly but who suddenly focused on something or someone just behind the nurse and started to converse clearly with them/it.  ‘What was it?’ I asked.  “I don’t know’ replied the nurse.  ‘All the hair stood up on my neck and I was too scared to turn around.’

Meanwhile back in the HD ward The Fruit Lady was replaced by Clucking Man and the fun really started.  Clucking Man’s actual name was John and he had been involved in a terrible car crash.  The driver had suffered multiple injuries but of a type, although serious, he would recover from in time and walk out of the hospital to resume his life.  John, on the other hand, had broken his neck high enough up that he was completely paralysed from the chin down, being able to move nothing but his head – and his mouth.  To start with he had been unable to talk so some bright spark had taught him to loudly click his tongue against the roof of his mouth to get attention or help. Unfortunately for everyone, he decided to employ this loud clucking noise ALL the time.  All day, all night, all through the next day…and the next night.  To start with our nurses went to see what he needed but it appeared that he either didn’t want anything more than to make them walk over to his bed or he put in requests that I couldn’t hear but that elicited responses much along the lines of the Meatloaf song – ‘I’ll do anything for love but I won’t do that’. 

Clucking Man, as he became known, was also a mystery since he appeared to have no next of kin.  He refused to name anyone when asked and nobody had come to see him since his accident or contacted the police about his disappearance from life. The hospital staff put in a lot of effort to try and trace family or friends for him not only on the basis that he was a young man who must have somebody missing him but also because the bald truth was he was never going to be able to look after himself again with no movement and would require specialist care for the rest of his life. Repeatedly they drew complete blanks until, strangely, it turned out that the matron of the spinal ward was a distant cousin and she managed to get in contact with some people who claimed to know him.  A few days later two of these so-called friends turned up at his bedside.  Earwigging for all I was worth, I strained to hear their conversation.  After some perfunctory hellos and how are yous, the two men went straight into questioning him about some money that he had supposedly had in his pocket at the time of the crash.  It rapidly transpired that they were not interested at all in Clucking Man’s welfare but only in the £500 they wanted off him. John either had no idea where the money was or refused to say so the men left after 15 minutes leaving the hospital still with a gravely injured patient who appeared to have absolutely no-one who cared about him. 

That said, he was not a terribly likeable man.  He tried to get attention from the nurses all the time and they rapidly got tired of him loudly clucking away and calling them to his bedside for no reason.  After a several visits, when they ascertained nothing was wrong (apart from the catastrophically broken neck and paralysis, obvs), they took to ignoring him so John rapidly switched up his tactics and took to shouting ‘Help!  Heelllpp!!’ instead. This produced a few more bedside turns from the staff before they went back to trying to ignore him again so he then expanded it to ‘Help!  Help!  I’m dying!!’.  Technically one could argue that this was true – aren’t we all – but, hooked up to machines monitoring his vital signs 24/7 in a high dependency hospital ward, there was plenty of real time data to baldly contradict his claims.  ‘No, Clucking Man, you are not, unfortunately, about to die.  Observe your steady and regular heartbeat, your excellent oxygenation stats and all your bloods are looking good.’  

In fact, he was probably the heartiest in the ward as he took being ignored as a signal to simply redouble his efforts so we spent the rest of that day with ‘Help!  Help! I’m dyyyiiinnnggg!’ ringing loudly in our ears at five minute intervals.  He didn’t respond to any sort of request to be quiet so eventually a nurse strode over and administered something which knocked him out into a, thankfully, silent sleep.  

Clucking Man snoozed gently through that night and most of the next morning with all of his neighbours basking in the bliss of a quiet ward.  We had breakfast, we dozed, we took drugs and got stuck with more needles.  Some of us (ie me) had physios stick things down their throat and suck out loads of gunk and got pummelled and then attached to a nebuliser.  It was almost enjoyable.  Into this peaceful idyll came Somebody Important.  I’ve no idea who they actually were but they were wearing an expensive suit and showing four other Important People around the ward as one of the hospital’s equipment and capacity highlights. Expensive watches flashed and pearls clinked as they looked around curiously at the beds and machines and inmates.  They nodded sagely as Somebody Important talked through what the ward was for, what it could do, how it was able to cater to even the most severely injured and keep them safe and well.  Finally Somebody Important turned to our nurses.  ‘Everything ok in here?’ he asked.  Possessing an incredible sense of timing, it was precisely at this point that Clucking Man woke up.  ‘Help!  Help!  I’m dying!’ he yelled.  The Important People looked positively terrified and agog all at the same time, presumably expecting to witness some top Casualty style action as these crack nursing staff leapt to aid this patient. Our senior nurse sister smiled serenely.  ‘Oh, yes.’ she replied ‘Everything’s fine’ with neither her nor her colleague so much as looking in Clucking Man’s direction at the bottom of the ward.  He increased the volume – ‘HELP!!!!  I’M DYING!! I’M DYIINNGG!!!’.  Important heads swivelled confused between his bed and the nurses, who still didn’t move.  So Clucking Man went for broke.  ‘SUCK MY C***!!!!’ he bellowed.  The Important People were hastily bundled out of the ward.

After this piece de resistance, Clucking Man was dispatched to his own room several doors down where he could be shut away.  I promise you that weeks later I was wheeled past his door and could still hear, albeit faintly, ‘Help, help, I’m dying’ wafting on the breeze.

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Can You Apply the Cream?

My tweets one day from my second hospital went as follows:

Lady with dementia just wrestled her way out of bed to phone her husband ‘to tell him where I am’. I explained that he’d only just left.

Lady with dementia just wrestled her way out of bed again to phone her husband ‘to tell him where I am’. I explained he’d only just left.

Lady with dementia just wrestled her way out of bed yet again to phone her husband ‘to tell him where I am’. I explained he’d only just left

Lady with dementia just wrestled her way out of bed to phone her husband ‘to tell him where I am’. I said ‘Good idea’.

I didn’t know she was trouble as soon as she walked into the room but I had a fair idea within five minutes when I heard her daughter say, in tones of dismay “Oh no, I’ve forgotten her anti-psychotic drugs” – always a comforting thing to know about the person who’s spending the night in the bed next to you when you are paralysed from the neck down.  

It was November, winter and its various ailments was upon us and the hospital was on what they call a ‘reap five’. REAP = Resourcing Escalation Action Plan and level five is ‘critical’. In other words the hospital was full up with all the beds in the entire place occupied and targets – whether in 999 ambulance response or in A&E – being missed left, right and centre.  Unfortunately, illness, infirmity, bad luck and downright carelessness don’t take much notice of such things so A&E was still receiving a huge influx of people, some of whom were not fit to be patched and dispatched but needed to be somewhere safe, supervised and medically ready to roll for at least one night.  There were of course absolute cases that no-one would argue with stashing in a hospital, such as those who have really done themselves a mischief or whose major organs have decided to give up the ghost but many of them fell into a ‘need definite supervision but are not ill with something that is going to kill them imminently or, perhaps more crucially, with a problem that the hospital was equipped to sort’.  The largest group of these were vulnerable elderly people.

Talking to the hospital staff, the big issue was that there was nowhere else to safely put them.  Many elderly people needing help are still living at home with carers coming in several times a day to check on them.  Sometimes those carers are privately funded and sometimes they are paid for by social services but, in either case, putting them in a home is astronomically more expensive, whoever is paying the bill and, with council cuts driving ever deeper, places are few.  Of course, many would rather eat their own arm than go into a home but relatives are not able to be there all the time due to their own commitments and carers are usually only there for a maximum of three calls a day and not overnight.  So, what do you do if your elderly relative falls late one afternoon and hurts/upsets themselves enough that they cannot be left overnight alone?  You call for an ambulance and they get taken to hospital where, once admitted and obviously vulnerable, they cannot be hoofed back out into the dark night to an empty house. Now, you have to find them a bed.

Down on the spinal ward, with our collection of uniquely vulnerable and work intensive inmates, we were supposed to be the last resort for hospital managers on the prowl.  Despite this I was warned by staff that, if I got taken out for the evening,  I should make sure that I was back by 10pm or face returning to find someone ensconced in ‘my’ bed for the night.  I laughed.  They didn’t. 

With my neighbour gone, the empty bed next to me became a revolving carousel of various  people, none of whom had a spinal injury but most of whom had mental illnesses that rendered them the worst people to attempt to share a night’s sleep with.  The lady whose daughter had forgotten to pack her anti-psychotics started off well enough with complete silence behind her flowery curtain until 2am.  At this point she commenced wailing “Nooooooo! NO! NO, no no no no noooo!” which she continued until 7.30am when the arrival of breakfast and the insertion of some Weetabix restored calm.  By this point, I was the one that needed the anti-psychotic drugs. 

Then there was the elderly lady who, in the middle of the night, decided she needed to go somewhere.  Her attempts to leave were foiled by the cunning manner in which her bed curtains overlapped.  Unable to find a clear gap through which to make her exit, each time she wrestled manfully with the material, muttering to herself until, sprung free, she took two steps and promptly entangled herself in my curtains, whereupon she repeated her escape manoeuvre and then was utterly bewildered to find herself back inside facing a bed, apparently exactly where she started.  It was lucky for me that she was a determined type as, at that point, had she given up and decided to go back to bed it would have been my bed, still containing me, that she would have been clambering into. 

Another was terribly upset that her husband didn’t know where she was and would be worried about her.  Every quarter of an hour or so she would suddenly start crying, genuinely distressed and wanting to find a phone to ring him.  There were two problems with this – first, she was in hospital because of a bad fall due to being very unsteady on her feet and not supposed to be moving about on her own and second, her husband had been with her all evening and had only been gone half an hour when the first episode started.  My attempts to reassure her on this latter point worked but only for the fifteen minutes it took for the cycle to repeat itself.  Eventually, I gave up and let her totter out to the corridor and the nurses’ station where I hoped someone who knew more than me would be able to reassure her. 

However, none of our female ward visitors even came close to Jack. 

Jack arrived just before Christmas, presented by his relatives at A&E with a rash in a delicate area. Of course, A&E is not the place to go just for a rash but Jack was also in the throes of severe dementia and the staff were pretty sure (and they’d seen it before) that the rash was just an excuse for dropping Jack off for the holidays so that they didn’t have to deal with him over Christmas. 

Physically (apart from the rash), he was in fine fettle.  A big, strong man despite his age, he was well over six foot but harboured a deep distrust of anyone in uniform and a burning desire to escape and go home.  This combo made him extremely tricky to deal with for the nursing staff, who were already under pressure with all of us lot. 

Jack was put into a male ward next door to ours and joined five other spinal patients in there. Three of them were relatively mobile paraplegics – guys with lower injuries and able to move themselves around pretty quickly.  One was a man who came in for a persistent UTI requiring intravenous antibiotics but was also carrying a pressure sore when he arrived. Under the circumstances the dressing didn’t get changed so the sore turned gangrenous and, faced with the prospect of losing his leg, he sunk into a deep depression and refused to move, speak or eat.  Finally there was Nigel.  Ill with a stomach bug he had fainted in the bathroom and fallen, breaking his neck high up and leaving him completely immobile from the chin down when he came in.  These five were now joined by the robust, extremely ambulatory, presumably itchy and very angry Jack who staged his own version of the Great Escape every night, usually by trying to smash one of the large floor to ceiling windows and climb out of it.  The first few times this happened the staff would run in and try to dissuade him but with his hatred of uniforms this only enraged him further and led to a Benny Hillesque chase around the ward and surrounding unit until the fun stopped one night when he turned on one of the Healthcare Assistants and punched her in the face.  As I’ve said, he was a very big bloke and there were usually no more than two ladies on duty (there should have been at least four). There was no way they could restrain him on their own and it was reaching the stage when someone was going to get badly hurt. At this point, heroically and chivalrously, the inmates of the ward stepped, as it were, into the breach and told the nurses to leave Jack to them and they would try and reason him down on their own when he started his breakouts.  This worked better although was not foolproof and was complicated by Jack’s decision that, of all of them, Nigel looked the most sympathetic.  Hence it was that Jack then took to presenting himself at the immobile Nigel’s bed in the middle of the night, pyjama trousers around his knees, tackle out and pot of ointment in hand, asking Nigel to apply the cream.  Obviously, the other guys had a few helpful suggestions as to how he might do that without hands but, after they had stopped laughing they gently steered Jack back to his bed and fetched a member of staff who, hiding her uniform temporarily with a coat and armed with the ubiquitous gloves, would soothe the savage rash.

As you can imagine, everyone breathed a sigh of relief when Jack was eventually discharged on the 28th December.  Happy New Year. 

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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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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. 

Categories
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 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 blog.  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.  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

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.