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A Fox Lake Blog

A Dressing Down

Getting undressed and dressed whilst immobile from the neck down and only one half-working hand is quite a performance. The thing that makes it really difficult is the lack of hands rather than the immobility.  I was once genuinely asked during a live interview with Sky about a new breakthrough in restoring hand function whether it would be – and I quote – “useful to have my hands back?”.  Given brain size and opposable thumbs are the two features that have elevated homo sapiens to the top of the animal tree, it took a superhuman feat of restraint on my part to simply reply politely ‘yes’ as opposed to rolling my eyes violently and shouting obscenities.  If you’re really bored one day I challenge you to get dressed with just one hand whilst sitting in bed without moving your legs to give you a small flavor of what it’s like to be quadriplegic.  Hint: bloody annoying.

However, wheeling about undressed is generally frowned upon, even in hospitals so dressing practice was something we were encouraged to try if we did have any arm or hand function to work with.  I spent many, many mornings wrestling with my T shirt/socks but, for a long time, dressing myself was beyond me and I had to be helped into my clothes by a member of staff.  Most of the nurses were female but we did have two male nurses at my second hospital and I was asked, when they were on duty, whether I was happy to be helped to wash and dress by them or whether I wanted to wait for a female nurse to be free.  Whilst not impugning their professionalism at all, I was at first adamant that I did not want to be stripped down, flannel washed and then re-dressed by a bloke.  It seemed an embarrassment too far and I cringed away from it.  However, I soon learned that waiting for a female nurse or HCA could mean being stuck in bed all morning, given staff shortages.  Eventually, after several mornings wasted just sitting waiting for female assistance, I resigned myself to being helped by a man instead, reminding myself that the blokes on the ward were coping with nurses of the opposite sex helping them where required without wibbling about it.

I don’t remember much about the eventual washing and dressing experience with the first male nurse other than the fact that, right at the end he told me that I could “jiggle my own bits into my bra”.  Given he had just washed and dressed ALL the rest of me, this seemed like the very definition of arbitrary and accordingly became my tweet for the day. However the most memorable dressing episode happened with Nofret.

Nofret was one of an influx of Spanish nurses recruited by the hospital in an attempt to address the severe shortage of qualified nurses from the UK. This isn’t a chapter on the dire state of nursing in the UK so let’s suffice to say that thanks to various shenanigans including the freezing of pay and the downgrading of nursing roles and authority on the shop floor, there is a huge gap in the number of nurses needed and the number actually enrolling and qualifying. Since we were still in a time where Brexit was no more than a twinkle in David Cameron’s eye, our NHS trust had sought to address that staffing lack with qualified European nurses. Nofret had just arrived into the North of England with a firm grasp of all necessary nursing requirements but absolutely none of the English language. 

Accordingly she arrived at my bedside for the morning routine one day.  We managed hello and how are you, which promptly exhausted most of my knowledge of Spanish with the exception of me being able to ask how her hamster was.  For this arcane bit of knowledge I can thank a Spanish language book I perused prior to a trip to Peru, which also, I believe, included teaching me to instruct how I would like said pet rodent cooked.  Or perhaps it was a different hamster – either way, lying in bed as I was wearing only a flimsy hospital gown and being about to attempt removing clothing, washing and reapplying clothing, it seemed the height of foolishness to introduce anything about hamsters so I kept that to myself and reverted to English.

Our first hurdle was to work out what I was going to wear.  We started well – I gestured towards the cupboard in my room, Nofret opened it and by waving at my legs, feet and top half we acquired leggings, T-shirt and socks. Now we went up a level of difficulty; how to mime pants and a bra.  I gestured at my chest like something out of a Carry On film (both hands clutching embonpoint but resisting the temptation to accompany the action with clown car hooter noises) and Nofret got the message immediately.  Knickers were slightly trickier – loath to wave too much at my nether regions for both of our sakes, I instead opted to try and mime ‘leggings but smaller’.  This did not go well.  Nofret understandably interpreted this as me wanting to change the leggings for some shorts.  Whilst it was warm in the ward, it was nonetheless still November so I shook my head and attempted to point at the relevant shelf in the cupboard.  Unfortunately, as both hands were still curled into fists pointing at all, never mind accurately, was not actually possible so what I actually did was hold out a clenched fist in the direction of the corner of the room. This did not aid the situation.   I contemplated my next move and decided that asking for more sangria, which was the last phrase I had up my not yet worn sleeve, was probably not going to help.  Luckily Nofret took the initiative and started working her way down the cupboard shelves, waiting for me to nod when she reached the right section. 

Then we moved onto the washing – by the end of which I had resolved to urgently contact Berlitz or Lonely Planet and demand they add the following vocab to their Spanish phrasebooks:

Washing-up bowl

Orange does nothing for my complexion

Flannel

My trousers are on back-to-front

We’re going to need a bigger towel

and just to pass the time – are you going anywhere nice tonight?

TWO HOURS later I was up, washed, dressed and in my chair and both of us were exhausted.  I’d like to be able to tell you that my Spanish improved from the experience but this was not the case.  What did improve quite remarkably was Nofret’s English.  Only a few weeks later I heard her sail into a ward and cheerfully ask a patient “Do you want owt, love?” in a broad West Riding accident.  That’s the danger of learning your English in Wakefield. 

#Dressing practice today. If you don’t hear from me, I’m lost in my T-shirt. Call for help.

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A Fox Lake Blog

The Psychologist

No-one who has been reading my meanderings will be at all surprised to learn that I know very little about psychology.  However, I had assumed that actually having a patient that could communicate in some way would make any course of trauma counseling more efficacious.  Imagine my surprise therefore when I was informed in the HD ward, whilst still intubated with my tracheostomy tubing and therefore unable to speak, that the hospital psychologist had been booked to come and give me a session ‘to help me over the trauma of being left alone for five and a half hours whilst I waited to be found after my fall’.  I received this news in (mute) astonishment since I didn’t consider myself traumatised at all by this part of the accident.  I mean, granted, it wasn’t the way I would have chosen to spend a Tuesday morning but as lying paralysed in a field goes, it could have been a lot worse.  The sun was shining, it was warm, I was close to home so I figured I would eventually be found and I was surprised to learn that it actually had been five and a half hours so clearly I had spent some of it unconscious, which is probably the most sensible way to have coped.  No, what had REALLY traumatised me was my induced coma in intensive care.  

It is difficult to relay just how confused you become and how quickly you entirely lose your grip on reality when being pumped full of incredibly powerful drugs that cause vivid hallucinations.  I am told that everyone patiently explained to me what was happening and what they were going to do to me before it was done.  I knew none of this.  What I knew is that I was trapped unable to move and not breathing. I couldn’t see anything but blackness interspersed with purple zigzag lines (occasionally yellow ones) but – and this is the key thing – I wasn’t unconscious.  I was still aware, still consciously processing, still thinking.  So conscious in fact that I remember the whole thing very clearly, even now.  To start with I was lying with enormous pressure on my face so, at some point I must have been put on my front.  I knew that I had broken my neck and that I had been paralysed.  I also knew that I was very seriously injured and that it was not at all certain that I was going to live.  I was relieved to be able to genuinely contemplate dying with the view that I had had an extremely good life and had no regrets.  Everyone I cared about knew I loved them, I’d been fortunate enough to travel widely, love my career and gather a bunch of fantastic people I am lucky enough to call friends.  But now, apparently trapped in the dark, motionless, unable to speak, with the pressure on my face, I thought I HAD died and been buried. 

My thought process went like this “Am I dead? If I’m not dead then why can’t I breathe or move or see or speak or hear anything? Why do I feel like I’m being pressed face first into the ground? And if I am dead then how long does this consciousness last? Will I be trapped like this forever? Or just until enough of my brain decays so I am no longer able to think?  I don’t think it’s supposed to be like this – there’s supposed to be either absolutely nothing or reincarnation or the pearly gates and tricky questions from a bloke with wings and a flaming sword – but what if this IS it? This horrific, trapped awareness with no relief and no escape?”  And then I felt this – understandably – huge wave of terror which lasted until they pulled me out of the coma from time to time – which was usually at least twelve hours but could have been days.  I have no idea.  No wonder people come out of ICU complete basket cases. 

Now, obviously, looking back, none of this thinking stands up to even a few seconds of logical thought but vast amounts of hallucinogenic drugs are not conducive to calm, logical thinking.  I expected to be lying in a hospital bed.  I did not expect to be consciously unconscious and I wonder now whether it would have been possible to keep me conscious but calm by hitting me with heavy doses of valium or other anti-anxiety meds rather than by trying to knock me out entirely.  I understand why intubated, ventilated patients are put in induced comas from a care point of view – it’s considered to be easier for them and for the medical staff.  Certainly I have two chipped teeth from gnashing furiously on my own tubing and staged several attempts to rip it all out – a common reaction from many patients in the same distressed situation where the brain has gone into fight and survival mode and it feels like the tubes are what is suffocating you.  However, after the accident but before the operation to piece me back together I WAS lucid enough when brought round to sign over power of attorney and to clearly remember them explaining – and putting me into – traction.  So, I put it out there that I would have much preferred to be lying in my ICU bed conscious but sedated.  MUCH preferred.  Instead I spent two weeks absolutely bloody terrified and confused and just wanting very much to actually die rather than endure this horrific, imagined half death.

All of this went through my head as I looked at the nurse.  Obviously I couldn’t say anything so I tried to convey with my eyebrows that I thought seeing a psychologist was an excellent idea because yes, I was a gibbering wreck but it wasn’t the accident per se that caused the trauma but rather intensive care but wouldn’t it be a better idea if we waited until I could, you know, actually talk back to the psychologist as that might immeasurably help the process?  I’m sorry to report that my eyebrows entirely failed to communicate any of the above so the nurse patted my hand and said “Good, that’s what we’ll do then.”

A few days later a very young girl approached my bed.  I say very young – she was possibly mid twenties but had a diffident and nervous demeanour that made her seem more childlike and certainly wasn’t the air of calm competence and seen-it-all-before experience you would like a counselor of any kind to exude. “Hi” she said, “I’m the psychologist.  I understand you are very traumatised by waiting so long to be found”.  This one was easy.  I shook my head vigorously. 

“Oh” she said “You’re not traumatised?”.  I considered.  Would it be better to nod first to indicate I WAS traumatised or would she think I was signalling agreement to not being traumatised? So then should I shake my head first and then nod it?  Or vice versa?  I nodded. 

“Does that mean you are traumatised by your accident or not?”

I nodded again.  Then shook my head.  Then gestured at my mouth full of tubing.

She frowned.  I suspect all the stats on ICU cognitive impairment were trickling through her brain.  “Do you not want to talk about it?” she asked. I gave her my hardest stare then waved my one trusty arm at my tubing again. Genuinely I don’t know whether she realised that I couldn’t talk or thought that I was just holding out on her.

“Maybe” she said “This would be better when you are ready to talk a bit. I’ll come back later.”  I tried my best to get my eyebrows to convey a world weary resignation at this piece of genius and on that note she departed and never came back.  This totalled the full extent of the psychological support I received after my accident since at my next hospital they didn’t even have a psychologist.  

Months after I’d been back at home a survey came through for ex patients from the second hospital asking whether we thought providing a psychologist would be a good idea.   I considered the feedback form.  Did I think that providing mental health support to people who have seen their lives ripped apart by the trauma of paralysis might be needed?  Those patients who, having survived awful trauma, had lost their independence and dignity, been almost gleefully told that they will “never walk again” and that “there isn’t and never will be a cure”? Those people who have seen their livelihoods disappear, lost their now inaccessible homes, many of whom have had relationships crumble under the strain?  People who, in addition to being trapped in a wheelchair, their sense of identity blown apart, are stalked by relentless nerve pain, facing a future full of uncertainty and knowing that getting older will only make things worse – not to mention the fact that they will have been told, as I was, that their life expectancy is now curtailed?  Those people.  Did I think that it might be a good idea to provide them with some psychological back up and help?  Yes, the powers that be really had found it necessary to canvas opinion on this question, which beggars belief.

If I sound angry it’s because I am.  And I’m also heartbroken that so many fellow SCI patients have had to fight their way through this horror without any mental health back up – often whilst having the very professionals who should be encouraging and protecting them, actively undermine their fragile hopes.  I have always been a relentlessly upbeat person but even I actively considered killing myself after I left hospital – not just because I was no longer able to do anything that I loved before the accident but because of the guilt I felt at dragging all my loved ones into this complete mess.  This injury doesn’t just blow apart the hopes and dreams of the injured; it rips up and tramples those of their partners and family too.  At first I was unconscionably annoyed that, given my paralysis, it was actually going to be rather difficult for me to successfully top myself.  I was fairly sure – note only ‘fairly’ – that those around me weren’t going to answer in the affirmative to requests such as ‘If I sit here, could you just accelerate at me?’ or “I can’t quite hold this knife, would you mind?’ so eventually I concluded that the only real solution would be to overdose on all my drugs at once.  Given I was on a cocktail of six at the time, with a three month supply provided of each, this was (does sums in head) a total of 558 tablets.  Whilst these would take a considerable amount of application to consume with only one working hand, the pharmaceutical collection also included peppermint pills so I would at least expire with minty, fresh breath.  It’s the little touches that count. 

In the end it was the impracticalities that stymied me.  I decided that, knowing my luck, I would probably fail to do anything more than make a bad situation worse by adding organ failure or brain damage to my collection of impairments so I just had to swallow the guilt, if not the pills and get on with it. 

FYI I ticked ‘YES’ on the questionnaire form and sent it back. 

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For Better, For Worse

If you’re anything like me then you probably cantered through your wedding vows in earnest but not actually expecting to deal with the ‘worse/poorer/in sickness’ bits until some time in a distant future and hopefully, not at all.  Our anniversaries were celebrated as follows:

  1. A wedding gift of a weekend in Venice 
  2. Four days on the Amalfi Coast
  3. Middlesborough to Wakefield on the A19 in the back of an ambulance.

To be fair, Himself probably realized that he had made a terrible mistake in marrying me at all when I completely forgot not only that it was our anniversary the first year but somehow failed to remember we’d booked the Venice weekend on top.  In my defence, there was the offer of a feather and leather fancy dress party on the same weekend (who amongst us would not be distracted by that?) and it had been reserved since the wedding as the gift came with the condition that we had to stay married at least a year before being allowed to go. We suspected that the donor had been burnt before with another godchild gadding off to Italy and then splitting up with their other half but we didn’t like to enquire too closely. It did however allow me to get back from Venice and immediately tell Himself he was dumped – a gag I found predictably hilarious. 

So, anyway three years in and back in my hospital I had now waved goodbye to the High Dependency ward, Clucking Man and the Murderous Ventilator and been wheeled into a general ward on the spinal unit where my ‘rehabilitation’ was supposed to begin.  For weeks I had dreamed of this moment – escaping from the pain and terror of being kept alive to gaining a relative normality and the chance to start working on recovering function.  If this seems a strange sentiment then I stress that I am, of course, immensely grateful to all the amazing staff who ensured that I am still here but let no-one think that surviving severe medical trauma is a gentle process.  On the contrary some have compared it to being aggressively physically assaulted and I have sympathy with that simply because you ARE being physically assaulted even though the endgame is saving your life rather than nicking your wallet.  As I write this during coronavirus times I have read a few articles recently on how extended periods in intensive care actually affect patients and it makes for scary reading – it even has its own syndrome, known imaginatively as, er, ‘Post-Intensive Care Syndrome’.  A study of over 13,000 patients from 26 different ICUs showed that their long-term physical, cognitive and psychological health were negatively impacted with anxiety, depression and PTSD being very common (The Intensive Care Outcomes Network aka ICON study published in Critical Care, should you wish for a source and acres of fun bedtime reading).  In addition negative effects were more prevalent in those who were in induced comas and immobilized and even worse for those who had been on mechanical ventilation. Cognitive impairments affected up to 80% of those who hit this fun trifecta with deficits in memory, attention, mental processing speed and problem solving.  To all those who said that I was ‘exactly the same’ following my own ICU stay, your names have been noted. 

Back to the rehab – I was extremely excited to now be getting out of bed and allocated an hour in the ‘gym’. I also had to build up a tolerance to sitting in a wheelchair.  Again, every SCI is different but my retained sensation meant that sitting immobile in a chair was increasingly painful and one of the largest parts of my road to being able to do anything out of bed was to slowly build up my chair time. Any observers of this exercise would have seen a girl reading magazines (books were at this stage beyond me – see cognitive impairment, above) and turning the pages with a combination of one finger and her nose.  Not a technique generally recommended but I had to use most of my working hand to keep hold of said magazine since, at that stage, like a small baby in a high chair, anything that went on the floor was effectively out of bounds.  Of course, with only half a working hand I constantly dropped pretty much everything I needed/wanted/was using so I could usually be found sitting fuming surrounded by magazines/my phone/broken biscuits/the remnants of my cup of tea. I also discovered just how difficult it is to get into chocolate bars with just one hand.  Their wrappings are plastic enough to be hard to rip open with your teeth so I spent quite a long time gazing longingly at enormous bars of Dairy Milk which, given my weight loss I was being encouraged to partake of whilst being unable to open the damn things.  

When I had progressed to be able to spend a few hours in the chair I was finally allocated one hour of physio a day and taken upstairs to the ‘gym’.  I keep putting ‘gym’ in inverted commas because it wasn’t what most of us would imagine when that word is employed.  There was a large room containing one padded table (a plinth to give it its technical name), a stationary bike and, er, that was it.  The bike was entirely unautomated and therefore useless to anyone who had no lower limb movement which, given this was a specialist, spinal unit for paraplegics and quadraplegics, immediately ruled out 95% of its theoretical clients.  It may have had some hand attachments but I’d argue that if you only have the budget for one piece of equipment in your spinal gym you might want to buy something that works on the parts of the body paralysed people can’t normally use, not the part that gets more exercise than anything else.  My other immediate issue was timing.  One of the things newly injured people get told in the UK is that there is an eighteen month window after injury for recovery.  You are encouraged to make the most of this time as you are informed that any advances you are going to be able to make will happen then and, after eighteen months,  you will have recovered as much function as you are going to and must accept what you have at this point as the end of the line.  I heard this multiple times from various experts in hospitals and I have to wonder at this point if any of them understand going by evidence rather than by widely accepted myth.  Every single physio working in the SCI field I have come across has seen patients keep recovering function years after their injury, those patients including me.  The problem however is that many patients (all right, most patients) are not as stubborn as I am and so the ’18 month window’ becomes self fulfilling prophecy when they give up all attempts at rehab once they hit that point.  Furthermore, continued rehab outside hospital is out of reach of many because the NHS provides no funding for specialist neurophysio outside of the clinical environment.  Since a one hour session typically costs between £70-80, this is just not affordable for many.  I clearly remember chatting to one young guy who had been walking with a frame when he was discharged but, unable to afford to continue his physio, had lost most of the gains he was making and spent the last ten years in a chair as a result.  I can’t even begin to imagine the mental torture of living your life in a wheelchair having got as far as starting to walk again and then having all of that taken away due to not being able to afford the treatment to strengthen and cement it.  

So, given what I had been told, I was extremely anxious to make the most of my allotted, precious hour.  Unfortunately, it seemed that nobody else was. Despite the fact that I appeared to be just about the only patient at that point who was attending the ‘gym’ and despite the fact that I had specifically relayed the fact to the staff on duty that my session started at 11am, at 10.50am I was still lying in bed in my hospital gown.  Even with two staff, it was at least a 20 minute process to get me washed, dressed and decanted into a chair and another five minutes to get me pushed to the ‘gym’.  I arrived for my first 11am session at 11.25 to be told curtly by the physio that I was late.  We then spent another ten minutes getting a hoist and sling found in order to move me onto the plinth, where I was then folded over like a pretzel to ‘stretch’ me.  I remember protesting futilely that, despite the fact that at the time I could feel less sensation, as a person who could barely reach her knees pre injury, never mind her toes, I probably shouldn’t be folded up forcibly so my head was touching my knees.   Later, at my second hospital, after complaining of consistent pain in my right leg, I was sent for an MRI which revealed a tear in my hamstring – an injury which is still causing me problems six years later not to mention issues with the use and alignment of that whole leg.  So, if you are a physio dealing with SCI patients might I respectfully note that just because you can make somebody bend like a member of the Cirque du Soleil doesn’t mean you should.  Especially when the person in question is raising concerns. 

After around quarter of an hour of ‘stretching’ I was then hoisted back into my chair and taken back to bed.  Ironically it seemed that things rarely started on time but they sure as hell ended on it.  This went on for just over a week and, try as I did, I never once made a damn session on time and I was beginning to get very distressed that this would comprise the entirety of my longed for rehabilitation.  Luckily, however, another aspect of the NHS kicked in to save me.  My spinal consultant arrived one day to inform me that my address technically fell within the purview of a different NHS trust and therefore my rehab should be funded by them rather than the hospital I was currently in. I was told that a transfer had been put in for me and that as soon as a bed became available in the new spinal unit, I would be shipped off.  I was also warned that beds were at a high premium so I would get very little notice of my move – basically as long as it took for them to find an ambulance to transport me as soon as the call came through. 

Thus started a fortnight of comedy back and forth to get rid of me.  Two days after the conversation with the consultant the first ‘we have a bed free’ call came in.  The nurses duly set about trying to organise transport for me.  This took the best part of a day and meant that I couldn’t go until the following morning – by which time the bed had been taken by someone else – a fact we learned as we just finished packing my stuff.  This pattern repeated itself with slight variations – ie there was transport but no bed, bed but no transport, neither bed nor transport – capped off after two weeks by the original consultant returning to ask me if I wanted to stay at the current hospital since I was apparently showing lots of willingness to work on my rehabilitation.  This wasn’t a hard competition to be heading up as my only rival was the elderly lady in the bed next to me who frequently made excuses to stay there and, on the two occasions I observed her in the ‘gym’,  had been lying motionless on the plinth for the duration of her session.  I hastily declined since research by Himself into the new intended hospital had revealed that it was much better equipped, boasting a proper gym, a separate physio room including one of only two Lokomats in the entire NHS (more about that later) and a large sports hall plus separate occupational therapy room.  It also had its own canteen just for the spinal patients. I didn’t know what their timing was like but it couldn’t be much worse than where I was so I opted still to go. 

Eventually the gods of irony – all very much alive and kicking during this whole experience – saw fit to bring together a bed and ambulance on our anniversary.  My mother and Himself were hastily mustered to jump in a car and drive to the hospital so that Himself could keep me company in the ambulance whilst my mother followed behind.  Packed and ready to go I was, of all things, provided with a customer satisfaction survey to rate my stay.  (In case you’re wondering I gave five star ratings to questions such as ‘how well did we keep you alive?’ and lesser scores for measures such as ‘was your stay restful?’ and the cuisine.  To be on the safe side I ticked ‘don’t know’ on the ‘do you think you will stay with us again in the future?’ part).  I did, I’m afraid, make the point about always being late for physio which I felt terrible about because I saw one of the lovely nurses pick up and read my answers before I left and, despite the fact that I had, rightly, praised the nursing staff for being bloody amazing throughout, her face fell on reading my critique.  So, let me drop my veil, nay woolly blanket of sarcasm and state for the record that all the staff were amazing and doing an incredible job under circumstances that would see most of us go a bit queasy and have to sit down.  However that does not mean that things cannot be improved – nor does the fact that improvements are needed take away from the medical staff’s dedication.  Having lived in a hospital for nine months I can tell you that there are many, many things that need fixing in the NHS and the staff are acutely aware of the fact that they work in a system that veers between capricious and bonkers most of the time.   Dealing with the organizational insanity is probably their biggest achievement.

With survey completed and bag packed, I was wheeled out to my waiting chariot and loaded in.  So it was that Himself celebrated three years of being married to me by watching the A19 go by from an ambulance on an overcast afternoon whilst being chased in a car by his mother-in-law.  I’d say that’s a whole new income stream for Hallmark right there. 

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Why Patients Are Called Patients

The words you dread most as a patient are not ‘time for your injection’ or ‘what’s a suppository?’ Note – this was genuinely asked of me once BY A NURSE – but ‘I’ll just be in a second’.  They will not be a second.  They will not be a minute or ten minutes or even half an hour.  No, that person will disappear without trace for quite possibly the rest of the day.  A nurse once returned to my room a day after I had last seen her with the words ‘Now, where was I?’.  That won’t be too much of a problem if they were in fact about to stick a needle in you but it presents slightly more of an issue if they were helping you wash and dress when they uttered that immortal phrase.  I was once left half naked and shivering, abandoned on my bed for over an hour by a Healthcare Assistant who vanished promising return “in a minute”.

When you require another person’s help to do anything this timewarp factor becomes by turns infuriating and terrifying.  Back when I was in ICU and still on a ventilator, the nurses would disconnect the machine to turn me to be washed.  Then, because there were always competing demands on their attention, even though it was supposed to be one on one care, they would get distracted and wander off to do something else.  For example they’d realise that their flimsy, plastic apron had torn and they’d have to go and get a new one and put it on.  On the way to the dispenser Mildred would ask them where the gauze had gone so they’d go and help her look for it and, all this time YOU WOULD BE UNABLE TO BREATHE.  A fellow inmate of mine observed that it should be made compulsory for staff to hold their breath when they disconnected a patient’s ventilator for any reason and not be allowed to take another one until they had reconnected it.  I honestly think this is a superb suggestion.  When you can breathe easily and are helping Mildred find the gauze the minutes can fly by.  When you are trapped in a bed suffocating, every second feels long and, worse, when you don’t know when the air is going to be reconnected, you can’t move and you can’t call for help, every minute is a terrifying aeon. 

I also learned the art of asking at the right time and it isn’t when the night shift have just started.  Sitting in a chair unmoving for a whole day gets increasingly painful if you have sensation, which I do.  By 6pm you would be desperate to lay down but, with their shift finishing at 7pm, the day staff are rushing to get all their tasks done.  The night shift have a thousand things to get through as they take over so, if you make the mistake of not lodging a ‘help to bed’ booking with the day shift around 4.30pm so that you are on their list no-one is going to be free to help you until about 10pm.  I can tell you that four hours waiting in pain to get into a bed you are sitting right beside is an exercise in fury, frustration and humiliation – not at the staff but at your own uselessness.  On the other hand, it is also a superb driver to work really hard at your physio so you get better at transfers. 

However, before you assume that hospitals are all staffed by people with terrible timekeeping, let me stress that no-one was more acutely aware of the time issues than the staff themselves.  In my time on a spinal ward I had many conversations with harassed nurses and HCAs desperately trying to cover the workload of twice their number as nurses kept on leaving the NHS.  Pay in 2014/15 had been frozen for some time and living costs continued to rise. Meanwhile hospital management had changed shift patterns to eke out numbers.  Previously, at my spinal unit, the day had been broken down into three eight hour shifts.  Now there were two shifts a day – 12 hours each with a half hour overlap for briefing the oncoming shift at each end.  In that 12 hours they got two 20 minute breaks – officially.  In reality those breaks often didn’t happen, especially at night when we had two nurses and two HCAs on duty.  Once upon a time there would have been four of each but with two qualified nurses you only needed two out of the 32 of us on the ward to have an issue and suddenly the nurses would have to forgo their break and work straight through to cover.  That’s if hospital management didn’t pull staff out of our unit to cover on general wards, which they frequently did. 

We had two newly qualified Spanish nurses join the unit as part of the drive to make up the UK recruitment shortfall via the EU when it was still allowed – one of them got pulled off the ward and sent to cover a ward full of dementia patients on her own for the whole night.  She was still in tears about the experience several days later when I spoke to her and swore that if it ever happened again she would resign and head back to Spain. 

Meanwhile other trained staff could work in the same hospital for nearly twice the wage choosing what days they worked if they resigned as full time staff and went and worked for an agency – so, unsurprisingly, many of them did.  

I had conversation after conversation with demoralised people just running to stand still.  Many of them felt that they were no longer able to do the aspects of the job that had attracted them to nursing and healthcare in the first place.  I heard of halcyon days when staff could spend time practising transfers with patients, could ensure that everyone had a shower every day, could do patients’ haircuts or give them a shave, could take them on outings to help them acclimatise to being in a chair, could teach dressing and other things to make them independent before they went home.  By my time, all of this had fallen by the wayside.  I had a shower and washed my hair just once a week and this was because one of the occupational therapists had kindly taken it on as her thing and she was experienced enough to be able to use a hoist by herself and senior enough to ignore the edict that they had to be operated by two staff at all times.  The rest of the time I had to make do with a wet flannel wielded out of a washing up bowl of water.  If I was lucky, two experienced staff would make short work of this, getting me up and dressed in 20 minutes.  Other times it could take an hour if there was just one, less experienced person and especially if that person wandered off halfway through with the line “I’ll just be a minute…” 

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A Fox Lake Blog

Thank you, Stephen Fry

I owe Mr Fry a debt of gratitude although he will be completely unaware of either my existence or of how he helped me survive lonely nights in my first hospital without going stark, staring bonkers.  I had actually met him twice in the years before the accident – once when I randomly found myself standing next to him in the lunch queue at my university college where I played it impossibly cool by completely ignoring his presence and another time in a professional capacity when we were invited to a filming of QI in my days of working in advertising.  However, his real usefulness to me personally came without him actually being there at all.  

One of the hardest parts of being paralysed, especially in the early days in my first general ward but still when I was almost entirely immobile, was waking up in the middle of the night.  This occurred with monotonous regularity for a variety of reasons as hospitals are not restful places.  Someone else in the ward might have a problem or just be snoring loudly, the drugs from early evening can wear off, nurses on night shifts tend to behave exactly like the ones on day shift – lots of chattering and laughing coming from the nurses’ station – or you are actually physically woken to be turned.  It’s not good for the human body to rest in one place without moving and pressure sores are a danger that stalk paralysed people.  We are vulnerable to getting them and, once they appear, due to reduced circulation, it takes a very long time for us to heal.  Scrapes and cuts that would close up in a few days on a normal person can take weeks or even months to do the same.  Therefore all the patients in the spinal wards who are unable to turn themselves over in bed have to be physically turned by the nurses at four hour intervals.  

Since I spent a lot of time sitting on my arse, bedtime usually involved staying on my side to give my bottom a break from the pressure and, since I was unable to maintain that balance on my own with just control of my head and shoulders, I had to be manhandled and ‘arranged’ into a secure position to stop me flopping over onto my back.  Every four hours therefore nurses carrying torches would pitch up at my bedside and, like some covert shop window arranging operatives, would whip out a large number of pillows and bolsters and literally turn me from lying on one side to the other.  As the proxy shop mannequin in these scenarios I had little control over how I was posed. Had the nurses decided to dress me in a ridiculous outfit and hang me from the ceiling there would have been little I could have done about it.  Luckily,  if unimaginatively, they contented themselves with crossing my top leg over the bottom one to give me a prop that stopped me rolling forward, pulling out my bottom arm so it did not go entirely numb over the four hour stretch and tucking a load of pillows in behind me to stop me rolling back.  Two more pillows were put under my head to raise it slightly, my new top arm was left lying on top of the covers and, as swiftly as they had arrived, the nurses would depart leaving me in the dark. This was an efficient and necessary system but it had one major drawback.  It wasn’t comfortable and, once the nurses had departed, there wasn’t a damn thing I could do about it.  By this point I was breathing on my own (HUGE hoorah!) but my diaphragm was still paralysed and my lungs only partially working.  I couldn’t cough or shout for example and I couldn’t either operate the nurses’ call button or the TV remote by my bed. So I was trapped in the dark for the next four hours until the nurses returned for my next modelling assignment. This is not a mental or physical recipe for peaceful sleep; in fact it’s a surefire recipe for gibbering to oneself quietly (I did quite a lot of that) all the way through to a full blown panic attack. Tally of panic attacks in my life before the accident = 0.  Tally in hospital = 4, all of them at night.

Another aside – I don’t know if you have ever had to watch TV whilst having lost the remote control but another fine test of my patience was being left to watch the TV over my bed without the ability to change channels. Breakfast TV was initially a real treat after the sensory deprivation of being cut off from the world in the ICU and High Dependency wards but it is designed for viewers who dip in and out as their different morning routines dictate, not for people who are literally stuck motionless with the screen a few inches from their head for the full 6am-9am stint without relief.  My delight and thirst for news rapidly waned after the third or fourth loop of the same headlines and, particularly, the exact same weather report.  The latter was especially ironic given the weather was utterly irrelevant to me, plonked in a bed inside a hospital as I had been and would be for weeks.  I’m sure that there are far more inspirational tales of those who have recovered function from paralysis motivated by a higher purpose but for yours truly the spur for working really hard on my hand mobility at this time was entirely motivated by the desire to be able to operate the bloody remote control.  Or, alternatively, perhaps this is an apt 21st century motivator.  Back in the early 1900s anyone unlucky enough to get a severe spinal cord injury was placed not in a bed in hospital but into a coffin since that is what they were expected to shortly require, so limited were their chances of survival.  Anyway, I digress.

Back to Mr Fry – or, more precisely, enter another genius idea, this one from my mother – audiobooks.  She turned up for visiting hours one day clutching headphones and a little MP3 player onto which could be loaded stories.  Demonstrating my sophistication and literary bent, I passed over all the classics and chose to have the Harry Potter books downloaded and piped into my ears as narrated by the mellifluous and familiar tones of Stephen Fry.  At lights out in the ward the headphones would be added to my night-time outfit and the ‘play’ button pressed for me.  I would drift off to sleep, high as a kite on my various drugs as quidditch matches played out and then, when I awoke in the dark, in those early hours of the morning when everything seems terrifying, Stephen would be right there chatting about whomping willows and flying cars.  True, he had usually patiently told me all about the goings on of twenty chapters or sometimes the whole rest of the book whilst I’d been ungratefully unconscious but since I had actually read all the novels, this did not bother me in the slightest. The comfort factor of having something to anchor me and to take my mind off the discomfort and the fear was priceless.  For two weeks we worked our way through the Potter canon in probably the most random fashion due to the nurses and I struggling to remember which chapter or book we had started or finished on and my habit of falling asleep regularly in the middle of it but I can tell you that it is impossible to panic with Stephen telling you a story.  

After a few weeks of much better sleep and remote control motivated hand therapy, I had regained enough movement in a few fingers to be able to press buttons or, as sometimes was necessary, to hold something whilst I used my nose or chin. This now meant I could now operate the call button at night and this small piece of independence and ability to make myself known to the nursing staff even from the far, darkened corner of my ward, meant that the night-time fear receded significantly. But still, from the bottom of my heart, thank you, Stephen Fry. 

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A Fox Lake Blog

Please Be Upstanding

After being horizontal for weeks, the day arrived when a consultant turned up at my bedside, surveyed me for a bit, spoke to the nurses in High Dependency and then told me that it was time I was put on the tilt-table.  “The what?” I said, in my Dalek voice, whistling through my speaking valve.  “I thought” said the consultant “you had expressed a wish to get out of bed?”  “I have” I responded “but I thought I’d be doing that in a wheelchair.”  The consultant rolled his eyes and explained that, having been horizontal for so long I could not be simply whipped out of bed and stuck in a chair as I would just immediately pass out.  Yet another consequence of a cervical spinal cord injury is having very low blood pressure and in combination with lying down for a considerable time, any physical elevation greater than a few pillows would see me swoon like a Victorian maiden within seconds. Therefore I would have to be reacclimatised to a semi-vertical state a bit like astronauts are acclimatised to G forces via enormous centrifuges but in a lot less exciting manner.  NASA would certainly laugh at the tilt-table.  It was, as its name suggests, a table that tilted.  It also had a few straps to stop people tilting out onto their face on the floor but that was the full extent of its technical complexity. 

Now, before we begin I need to do a quick rundown of blood pressure ranges, for those of you not au fait with what constitutes ‘normal’ through ‘this one’s about to faint’, ‘this one is definitely unconscious’ to ‘this one’s probably dead’.  If anyone is interested in my scale the other way it goes ‘this one is a bit stressed’, ‘this one is me fighting with a carpark ticket machine’ and ‘this one’s head just exploded’, just FYI. 

Blood pressure is measured in millimetres of mercury (mmHg) and is given as two figures – systolic pressure, the pressure when your heart pushes blood out and diastolic pressure, the pressure when your heart rests between beats.  These are shown as one over the other – ie an ideal blood pressure is considered to be between 90/60mmHg and 120/80mmHg.  High blood pressure is anything 140/90mmHg or over and low is considered as 90/60mmHg or under.  For the purposes of this story you may now immediately forget the high blood pressure stats as entirely irrelevant.  We are not going to be frolicking in that ballpark.

The procedure for the tilt-table was pretty simple. it was brought alongside the bed and the guinea pig (ie me) slid across from bed to table.  Like a lunatic in an asylum I was then affixed to the table by the means of leather straps around my chest, waist and legs and a blood pressure cuff attached to my arm.  From horizontal a small dwarf (it might have been a physio but I couldn’t see to verify and a dwarf would have been in keeping with the whole medieval torture chamber vibe) would work a crank handle to bring the table through various stages of tilt until a full vertical was achieved and whilst I was winched through the various angles my blood pressure would be taken at each interval to assess how I was coping and that I was not about to vomit or pass out or both.  Nobody is expected to get to vertical on their first go and the idea is that you do a session each day, slowly building up your tolerance.  My session did not start well when my initial, still horizontal blood pressure reading was taken.  I can’t remember what the diastolic reading was but the systolic was 76mmHg.  Consternation ensued as there was some general rule of thumb that if the patient’s blood pressure was lower than 80 then the experiment, sorry, exercise, had to be immediately stopped.  Noises were made about abandoning the whole attempt and putting me back in bed.  Dalek-voiced me was, luckily, able to interject at this point.  “If my blood pressure is already too low to go on this then how on earth is it going to get any higher?  I can’t stay in bed for ever”.  There was a silence so I helpfully added “Besides, it says you have to stop if my blood pressure is below 80.  It doesn’t say anything about not being able to start.” Let no-one say I wasn’t learning how to navigate the NHS. Everyone looked at me, then at each other.  Then they exchanged medical looks that could be basically translated as “f*ck it, let’s give it a go’

There was a creaking noise and I was slowly tilted about six inches.  My blood pressure was taken (still 76) and I was asked whether I felt faint.  I didn’t.  We cranked another six inches, BP dropped to 73, there was some flapping, I loudly told everybody I felt FINE, thanks so we carried on. Rinse and repeat another couple of times. There was however a slight hitch in my assurances – I had never fainted before so I had no idea of the warning signs and, in my attempt to get vertical as fast as possible so I could get out of bed into a chair,  I *might* have been exaggerating how well I felt.  To be fair I probably should have worked out that a loud ringing noise in both ears was not ideal, especially when coupled with my vision going white and a rising tide of nausea.  In the end however my attempt was stymied on the fifth tilt when my bp dropped to the low 60s and I apparently turned grey with blue lips whilst still declaring, by now somewhat feebly, that I felt fine despite not being able to see or hear properly and being on the verge of upchucking rhubarb yoghurt over everyone.  I was hurriedly returned to my horizontal state and then to bed,  much to my annoyance. 

Ultimately it took a few goes on the tilt table over the next days before I became completely vertical.  I still caused much medical consternation with my ridiculously low blood pressure but we reached a compromise whereby, probably very much against  guidelines, we ignored the verifiable data of the bp cuff in favour of just taking a judgement call on how grey or not I had gone before desisting. Once upright I then had to literally stand around for increasing lengths of time to get used to it.  This led to some alarmed looks from various ward visitors who had to walk past this bizarre figure randomly strapped to an upright table, still garbed in a natty hospital gown.  Some would smile at me nervously and some would just stare rudely. I took great pleasure in saying “Hello” cheerfully in my Dalek voice to the former and “Exterminate! Exterminate!” to the latter. Arf.

Eventually I succeeded in being allowed into a wheelchair and my exploration of the hospital beyond my HD ward began. I remember the first trip very clearly – Dad took me to Costa where I got to order a mango smoothie and sit chatting at a table once again like a member of the human race.  I couldn’t move below my shoulders and only had one half-functional hand but I was up and I was dressed and a kind nurse had done my hair and I wasn’t bloody dead.  Given what I had already been through, that felt pretty good to me. 

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The Barbara Bus

As you may have noticed I am attempting to give all of my chapters amusing or, at the very least, intriguing headings.  With this chapter there was no need for me to make any effort whatsoever because the Barbara Bus was already called, well, the Barbara Bus. For those of you not in chairs the idea that the average car and person in a wheelchair are not terribly compatible sizewise has probably never crossed your mind.  One of the key skills you have to learn as a person in a chair is how to transfer to other places like your bed or a plinth or into a car.  The lower the injury and the more upper body function you have and – not to put too fine a point on it – the less you weigh the easier this is.  For me, with a cervical injury and limited hand/arm function and absolutely no torso function, transferring anywhere at this early point was something I was not very good at.  Whilst I weighed barely six stone, I was still very weak and my muscles terribly wasted.  One of the key initiators of a transfer is to get your weight to a tipping point which you then use to lever yourself out.  This is usually achieved by first leaning your head and shoulders forward which, in my case, saw me simply topple towards the ground headfirst, the talent that had got me here in the first place.  So, crap/dangerous as I was any transportation of me would require a vehicle big enough into which I could simply be wheeled, chair and all.  Enter the Barbara Bus. 

The BB was the inspired idea of S.U.R.F (Spinal Unit Recreational fund), the hospital’s own charity to provide outings for patients of the spinal wing.  Run by current and ex patients and kindly staffed by the nurses and healthcare assistants in their own time, the charity had raised enough money to buy a minibus which had been specially adapted to take a wheelchair and occupant along with a number of their friends and family.  It had been named after the Barbara who had helped raise most of the money for it and was in high demand given there were quite a few patients in the wing like me who had not mastered their car transfers.  The BB was our only available method of transportation if we wanted to go out of the hospital and experience some of the outside world again so getting hold of it for the day or evening involved having to be pretty quick getting your name down and booking it.  I had been in the hospital several weeks before I even found out about the bus and it was several more, involving form filling in, the attending by Himself of a training course and production of driver’s licenses and insurance forms, before he was pronounced safe to drive and I managed to book a space.  After three and a half months of being incarcerated I was finally getting out.  Where did I choose to go for this momentous trip?  Leeds.

The Saturday finally rolled around grey and cold and it was the temperature that first hit me as I was pushed out of the doors.  Hospitals are usually super heated and having not been outside in in over a hundred days, I hadn’t experienced anything lower than a steady 30 degrees for some time.  The second thing that assaulted my senses was the air – it was moving, the breeze hitting my face and moving my hair about.  This isn’t something that happens to you inside a hospital ward either – at least, not unless you’re really unlucky.  It felt both incredibly normal and very alien at the same time.  Finally, I could smell the outside.  Car fumes, wet tarmac, damp earth – and the noise – birdsong, traffic. I felt overwhelmed and terribly vulnerable, trapped in my enormous hospital chair that I could barely push myself along smooth hospital corridors.  Outside even that tiny bit of independence was taken away as the ground is neither smooth nor flat in the real world. Pavements are full of cracks and uneven paving stones that trap the small front wheels on a chair, most are on a camber to allow rainwater to run off and even the smallest incline, probably not one you would even notice on foot, becomes a herculean struggle.  On the other hand, gentle down slopes see you gathering alarming speed like an out of control juggernaught without brakes or any of those nice run-off pits filled with sand.  I clutched my knees – rugged up like those of an old lady – to stop myself being tipped out and allowed Himself to push me to the back doors of my chariot.  He opened the back door.  I sat there shivering.  He then climbed inside and started unfolding ramps and pulling levers and unravelling long lengths of seatbelt webbing ending in metal clips.  This continued for about ten minutes.  Then my wheelchair was carefully positioned along the assigned wheel ramps and, with unnecessary straining noises, Himself wheeled me up into the back of the bus. Once ensconced my brakes were applied and then I waited another ten minutes as the requisite safety tying down took place.  Levers were locked into position, webbing threaded through my wheels etc – suffice it to say that, by the time the process was completed, that wheelchair was not moving, even if we hit a wall at 70mph.  There was just one teensy thing that the safety police had overlooked – the fact that I was not attached in any way to my wheelchair.  There I was, quite literally on the loose, raised on a platform at the back of the bus with an unimpeded trajectory of approximately 15 feet to the windscreen.  My precarious perch was made even more so by the fact that I had no hand grip to hang onto the arms of my chair nor any torso control to stop myself lurching in whichever direction the Barbara Bus turned.  Himself, a veteran of no less than four Speed Awareness courses, clambered into the driver’s seat.  “Ready?” he shouted cheerfully and not waiting for my answer, he set off.

Having a solid back to my chair, this initial momentum merely threw me backwards into it.  Braking to exit the carpark saw me scrabbling to stay in the chair and the initial turn out of it left me hanging off one side.  Fifteen feet away, oblivious at the front of the BB, Himself hummed cheerfully as he accelerated away up the road. From my lofty position I had an unimpeded view of what was coming as we bore down on a roundabout.  The brakes went on again, I scrabbled, we hung a left into the roundabout and I hung out of my chair to the right.  We went round the roundabout fairly swiftly, the momentum of which pushed me back up and then we were off once more.  My brain, institutionalised as it had been indoors for three and a half months, struggled to compute this tidal wave of light, noise, open space and, most of all, momentum. I felt much like someone plucked out of the 17th century and placed in a modern motorcar for the first time.  “Could we”  I gasped, breathlessly “slow down a bit?” It was here I encountered the other drawback of the Barbara Bus.  It’s a bus.  So Himself could not hear my querulous pleas from the back over the engine noise and vast distance between us as he barrelled along.  With my excellent view I watched the motorway slip road loom and we accelerated away up to a brain-frying top speed of 65mph. Never has anyone wanted to get to Leeds more. 

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Learning To Breathe On My Own

Terrifyingly I actually already knew that the above heading was a song title by Nerina Pallot, which only goes to show either how full of utterly random junk my brain is or an extremely questionable iPod collection – possibly both.  If you google this phrase (and I have – no stone left unturned on this research front) you will find that it is indelibly associated with freedom, independence and a oneness of body and soul.  It is also portrayed as a peaceful and enjoyable experience.  In my case this is half true.  Attached as I had been to a) one half-hearted ventilator, b) one over-enthusiastic ventilator and last by by no means least c) one murderously silent ventilator that kept trying to kill me, the concept of literally learning to breathe on my own definitely heralded freedom, independence and the inevitable mixed emotions inherent in parting from the dessert spoon that had saved my life.  It could not, by any stretch of the imagination however, be described as ‘peaceful and enjoyable’.

(It wasn’t the most painful experience I had in hospital though.  That honour was taken, by some considerable margin, by the experience of having my hair brushed after being in the ICU.  If I tell you that its competition includes having holes drilled into my skull, inserting screws and hanging weights from them to put my neck into traction and straighten it out, that might give you some idea of the scale of the pain. Two weeks of lying down, thrashing my head about and sorely neglecting my grooming routine left my hair tangled, knotted and matted with God knows what.  No less than three members of staff descended on me armed with comically named ‘detangling’ combs in one hand and bottles of some kind of unguent in the other.  I was liberally squirted with liquid and then they set to.  Out of the kindness of their hearts they were trying to save me having to have the whole lot shaved off but after three or so hours of having my hair tugged and pulled my scalp was screaming and I would have willingly waved goodbye to the whole bloody lot if – as ever – I had been able to speak and make my wishes known.)

The first attempt in removing me from a ventilator actually came very shortly after the accident.  Before I had gone into the op to stabilise and rebuild my neck, I had been able to breathe unaided – hence why I had survived the 24 hours between hitting the ground and being wheeled into theatre.  Intubation from the surgery was not a viable long-term solution so I either needed to go back to breathing solo or go back into theatre to have a tracheostomy.  The attempt to do the former was carried out with military efficiency and a corresponding military ‘cuddle factor’. Drugged up to the eyeballs I was roused from my induced coma, someone loudly instructed me that I was to breathe and, without further ado, my tubing was pulled out.  I tried to suck in air.  Nothing.  I tried to suck in air again.  Still nothing.  I sat with my mouth comically opening and shutting like a landed fish to much the same effect.  “Come on, come on.  Breathe!” admonished the consultant on duty as though I were merely being recalcitrant in failing to supply my lungs with critical oxygen. “Try harder!” he instructed.  I miserably failed again.  The consultant tsked at me and unceremoniously the tubing was shoved back down my throat.  

As it turned out, operating on or around the spinal cord, however carefully done, can cause more trauma and shock post surgery and this is what happened to me.  I went in able to breathe, move both arms and use my right hand.  I came out completely paralysed from the neck down with both hands curled into unusable fists.  The day after my landed fish impersonation a hole was cut into my trachea through my throat (the aforementioned tracheostomy) and the ventilator tubing attached to that rather than being through my mouth and down.  I can report though that this was done with anaesthetic and a scalpel by a proper doctor and not violently with a Bic biro by an untrained but yet bizarrely knowledgeable action protagonist like in most movies.

Cut to nearly four weeks later and it was time for take two.  This version was hugely aided by the fact that I was now fully conscious and grimly determined to rid myself of my ventilator.  My one ambition in intensive care had been to be able to take a lungful of air – it’s extraordinary not to mention sobering how much the horizons of your desires contract in extremis – and I hung onto this thought as the nurses prepared to disconnect me intentionally this time.  The plan was that I would build up my capacity in five minute segments twice a day meaning that, on the first attempt I had only to manage for five minutes with a nurse right beside me.  As it turns out, the secret to learning to breathe on your own is to not try too hard.  It might not look great on an inspirational tea towel but it is effective.  Calmer and under control in a lit room, I found that I was able to breathe very shallowly as long as I didn’t get panicky or greedy and try and suck in too much air.  The panic however still hovered at the edges.  Trying to activate intercostal muscles that had not been used for weeks was exhausting as was employing the willpower required.  I lay grimly watching the clock on the opposite wall tick away the slow minutes, determined not to give in early but also very eager to get to the end so I could stop. 

The rest of the week went the same way and by the end of it I was happily disconnected from the ventilator for more than half an hour twice a day.  I then upped the ante, jumping straight to an hour as my next target.  I was spurred on by the news from a consultant that, on average, this process took around three weeks before people could breathe unaided all day so I worked hard – if sucking in air grimly whilst watching a clock can be classified as ‘working’ – to get to the full day goal in under two weeks. There was also one other major advantage to being able to inhale on my own – at least, to me if not anyone else – I got my voice back.  This was done by means of what’s known as a ‘one-way speaking valve’, an accurate term in my case as, once I started talking again after nearly a month of enforced silence, no-one else was getting a word in edgeways.  However, the ‘one way’ bit is supposed to refer to the fact that the valve only opens to let air in.  When you breathe out, the valve closes thus forcing the expired air to pass out the only other available exit – up the trachea and over the voicebox, enabling speech.  It doesn’t look like much, resembling a type of grey, plastic plug that goes into the tracheostomy hole but oh boy did it mean a vast amount to me.  Not only did it restore my power of speech but as well as my similar inability to negotiate stairs, it gave me a voice like a dalek.  In these creepy tones I immediately took to cross-examining my mother (who happened to be the first unfortunate visitor present when they put the valve in) as to just what the hell had happened to me since I fell off the horse.  I was astonished to find that I had effectively ‘lost’ three weeks of my life and that we were now well into August, disappointed to learn that there had been no party in the ICU involving plastic bananas and a giant pair of scissors (or so she claimed), heartened to be able to actually start reasserting a tiny amount of control over my circumstances and vitriolic about the food.  The speaking valve also helped enormously with my breathing exercise since whilst rabbiting incessantly I stayed distracted and relaxed so the time off the ventilator flew by.  No doubt my interlocutors had an inverse experience and I suspect that some may have entertained thoughts about hiding the valve at times but, in my defence, I did at least demonstrate a greater conversational range than Clucking Man, if not his sense of timing and occasion.

Unfortunately all this chatting and breathing did not mean that I could remain off the ventilator overnight – sleep apnea is common with cervical injuries and I was too much of a newbie at this breathing lark to be allowed to stay nocturnally unconnected for another week.  I WAS, however, able to bid goodbye to the spoon at this point.  I’d like to tell you that we had a small party with champagne in paper cups and an impromptu speech encompassing the spoon’s best bits but what actually happened is that, much like a dodgy ex-boyfriend, it didn’t get bandaged into my hand one night and disappeared without trace, leaving no forwarding address.  

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Faecal Attraction

Upon my arrival at my second hospital I received for the initial few weeks of my stay the luxury of a private room.  Unfortunately this was not because I had been upgraded but so I could be screened for MRSA infection before being released into the wild of the open dorm.  I had my own bathroom, a glass wall onto the internal corridor which could be closed off with a blind, a door, the obligatory set of colourful privacy curtains and, facing out into a little internal patch of grass, a floor to ceiling window with a small ledge at ankle height.  Upon this ledge I placed the cards I received from friends and family and a small pot plant that someone had kindly brought.  The pot plant resided with me peacefully for a week before it was aggressively confiscated by one of the cleaning staff who informed me that it was ‘dangerous’ and had to go.  “Is that due to the risk of bacterial contamination from the soil?” I hazarded.  “No” came the response “It’s because it might fall off and hurt somebody”.  “But it’s at ankle height” I pointed out, futilely, as the plant was unceremoniously whipped away.   Later I encountered it in the cafeteria where, presumably, it must have been subject to a health and safety briefing as it now resided smugly on a ledge at shoulder height and remained there for the length of my stay.  As far as I know, it did not kill, maim or otherwise injure anyone from its lofty vantage point. 

On my first night in my room I enjoyed a blissful eight hours of solid sleep.  It was the first time in two months that I had not been trying to slumber surrounded by a combination of neon lights, snoring ward mates, chattering staff or beeping machines (Honourable mention of course goes to my murderously silent ventilator from which I would have welcomed slightly more effort). Finally I had a dark, quiet space and I slept the sleep of the exhausted.  On the second day I encountered the BCW.  

She announced herself a little like a villain in a movie by sending fluttering down from her room above mine a signature calling card.  In fiction this is a monogrammed handkerchief or cryptic symbol.  In real life – ie for me – this was a pair of brown-stained knickers.  I watched them caught by the wind temporarily, like that plastic bag at the beginning of American Beauty, only with less artistic effect.  They came to rest right outside my window, gusset side up.  I collared a passing member of staff who surveyed the stained knickers with the air of one who has seen many such pairs in her time and said “Oh she’s at it again, is she?”  “Who is ‘she’?” I asked.  “I have no idea” came the answer.  “But the ward above us is for the mental patients and this one likes to throw stuff out of her window.” Joining in the blunt nomenclature, I promptly named my neighbour above the Batshit Crazy Woman. 

Over the next few weeks I was treated to an art installation the likes of which the Saatchi gallery would have paid millions for.  Each new exhibit was first announced by the BCW with what sounded like a full scale riot upstairs.  Thuds and low groans would be followed shortly by what sounded like all the furniture being thrown around, Keith Moon style, accompanied by screaming.  This would last only a few minutes before the sounds of running footsteps and muffled shouting would filter down – presumably a handful of professionals armed with restraints and loaded hypodermics entering her room with intent.  Then silence.  About ten tension-filled minutes would pass before a new artwork would make its lonely yet eloquent wind-borne way down to outside my window.  Along with the ‘Life is Sh*t” panties, I was fortunate enough to be treated to the artwork ‘Blood is Thicker Than Water’, a study in human relationships laid starkly out on a used sanitary towel,  ‘I Will Not Succumb to the Injustice’, a brave defiance to all oppressors, created skilfully using a canvas of cotton worn close to the crotch for what appeared to be several days, ‘Inside I’m Bleeding’, an eloquent cry for recognition presented on a soaked tampon and ‘Rise Above’, an exhortation to try harder symbolised by a bra in one cup of which nestled a small turd. 

It did not appear that our little scrap of outside space merited cleaning and/or gardening very often so I was able to enjoy the full majesty of the BCW’s exhibition laid out before my window for at least a week.  I contemplated taking some photographs and having postcards made up, perhaps even a run of limited edition prints so that visitors could take a little piece of the magic home with them to put on the fridge. Unfortunately my ambitious plans to cash in were stymied by my inability to both hold and operate a cameraphone with only half of one hand and no torso muscles so I’m sorry to recount that the BCW’s efforts were not recorded for posterity.  Eventually, she hit an artistic fallow period (or more powerful drugs) and her messages ceased to flutter down to her awaiting public.  One day the exhibition was unceremoniously bundled into a black binliner and spirited away.  I like to believe it went on loan to the Tate Modern.

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A Fox Lake Blog

Waiter!

Hospital food holds a reputation for being pretty inedible.  In the first hospital I graced with my presence, this was literally true.  The first three weeks involved not eating anything at all since I was full of tubes and fighting for your life, it turns out, burns quite a lot of calories.  ICU and High Dependency saw me drop the best part of three stone in three weeks – I was like one of those facebook ads for an improbable diet that promises spectacular results inside an impossible timeframe.  Once my feeding tube was removed, the ingestion of real food could start again.  The first thing I ate was a rhubarb yogurt and it tasted wonderful.  My throat was too sore to start chucking anything  robust down it so ice cold yogurt was perfect and I consumed a number of these for the first two days thanks to my mother feeding them to me.  Then there was quite a lot of muttering about needing to build me up again, a hospital menu was produced and I was urged to choose some ‘proper’ food.  I can’t remember what I selected via nodding for my momentous first meal but I can remember what happened next.  Namely, the arrival of food was heralded by the rattling of a trolley full of trays and plates with metallic covers to keep the food vaguely warm.  The dinner lady and her trolley swept into our ward and the appropriate dishes were efficiently distributed to the correct beds.  I watched as my tray was placed upon my small table, which was at the bottom of my bed.  Paralysed from the neck down, save for one arm, I regarded my lunch from the distance of six feet for around 90 minutes whilst my fellow unparalysed ward mates scoffed their food.  Then the distant rattling heralded the return of the nice dinner lady, who swept up my tray and disappeared again.  This went on for a few days.  Unsurprisingly, I did not gain any weight during this time.  

A nutritionist pitched up at my bed whilst my mother was visiting one afternoon and delivered a lecture to her about the fact that I needed to put on weight.  Tracheostomy tubes down my trachea and therefore still unable to speak, I regarded her balefully as my mother took the proffered menu and chose the heartiest and most calorific option on it.  Along with my breakfast, this was duly left at the end of my bed again the next day for me to stare at.  Ironically I lost even more weight as I was no longer being given liquid food either and a few rhubarb yogurts a day were not really cutting it in the nutrition stakes.  Once again, not being able to speak was proving deeply inconvenient, especially when added to not being able to move or breathe either.  This unhelpful turn of events eventually came to an end on the fourth or so day when my mother arrived for visiting hours – which began at 3pm – to find my untouched lunch still sitting under its little metal hat, having not been collected that day.  Maternal questions were asked along the lines of ‘why hasn’t my daughter been fed her lunch?’ and an answer came along the lines of ‘nobody’s asked us to feed her lunch’. 

After that, I was added to the ‘needs food spooning into’ list but there were quite a lot of us on the overall spinal ward that fitted that description so by the time someone got to me, my food, despite its hat, was stone cold and the palatability of the cuisine had a corresponding relationship to its temperature; when one went down so did the other.  My first feeding day went badly when, after one spoonful of cold chicken in congealed mustard sauce, I refused to open my mouth for a second one.  Given it had by now been the best part of a week without much to eat, that tells you something either about how fussy I am or how truly dreadful the food was.  Or possibly both. My mood over the whole situation was not improved by one of the nurses informing my mother, in front of me, that I might be ‘refusing’ food as a way of re-establishing control. Apparently this can be an occurrence with paralysed patients who fight to try and gain some small measure of independence back in the face of overwhelming powerlessness. Lacking control over most of their body, they can at least control whether they open their mouths or not. In my case, however, it was once more a case of things being bad enough that I was buggered if, after three weeks of not eating, I was going to chew my way through anything that made me retch. However, I was not able to voice this opinion either and so sat glowering in my bed with jaw firmly clenched closed instead. It was at this point that my mother took over and heroically for the next month carefully prepared, cooked and brought in something for me to eat every single day until I moved to my second hospital which was practically Michelin starred by comparison – but more about that later.

Once I was out of bed and decanted into the world’s largest and heaviest wheelchair I was also able to visit the external food franchises of the hospital as well as the actual canteen.  The former consisted of a Costa coffee and a very small M&S food shop and it was almost impossible to get anything vaguely healthy to eat, despite being in a hospital.  The Costa’s menu consisted almost exclusively of gigantic portions of the most sugar and fat filled foodstuffs available to man.  There was something that resembled a Tunnock’s teacake but that was about the size of my head, a chocolate Rocky Road square that was probably a week’s worth of Weightwatcher points in one go and a Millionaire’s shortbread fit for a Russian oligarch.  Meanwhile, over at the M&S, there were sandwiches of all hues laden with mayonnaise (I know this because I spent quite a long time trying to find one without – see possibly fussy, above), crisps, flapjack and cake of many types.  However my particular favourite were the hospital vending machines.  These all sported stickers on them about cutting down on sugar and fat whilst, to a machine, being stocked with nothing except chocolate or crisps.  These choices did nothing to make it easier to fulfil my consultant’s recommendation that I consume around “90g” of protein a day.  For comparison, the DRI (Dietary Reference Intake) is 56g a day for the average sedentary man and 46g for the average sedentary woman and there was no doubt that I qualified as sedentary.  I don’t actually know how many grams of protein a head-sized Tunnock’s teacake contains but I’m willing to bet not enough.  Actually managing to eat double the normal daily allowance proved therefore to be rather tricky, given the choices on offer.  Eventually we invested in several tubs of protein powder that were added liberally to drinks, smoothies and rhubarb yogurts in an attempt to meet my quota. 

When I moved to my second hospital for rehabilitation, the spinal ward had its own canteen and its own menu.  My hopes were not raised overmuch on arrival by discovering that the offering for the following day was faggots in onion gravy but luckily a more savvy inmate flagged to me that there was also an ‘ethnic menu’ and this turned out to be twenty times more interesting, varied and tasty than its native cousin.  You could choose from a number of Indian, Caribbean and Halal options if faggots in onion gravy wasn’t your thing and all of them were delicious.  To be fair, most of the native options were also pretty good, all things considered – this despite me sitting next to one inmate who regarded the arrival of the chef bearing serving dishes suspiciously. “Is that the fella what cooks the food?” he asked me.  “Yes” I answered.  “I’ll send him a get well card” came the response. 

The dining room at my new hospital was the social hub of the spinal wing.  Dedicated only to those with spinal injuries, it was the one place that all of us gathered together at the same time.  Lunch was the main event – breakfast was served in the ward, literally in bed for most of us . (Whilst this is traditionally seen as a desirable thing, after seven or so months of trying unsuccessfully to spoon cereal into my mouth in bed without getting it all over me, I celebrated the morning I finally got to eat breakfast sitting upright at a table.  I commemorated this event by tweeting the news to my twelve followers.)

Dinner was more sparsely attended as visiting hours were 3-8pm and many made their escape out during this time to either eat in the main hospital canteen or out out for those that had already learned to car transfer or who had hired a wheelchair taxi.  Lunch is where we got to meet each other properly, chat, commiserate and ask questions.  There was very much an esprit de corps – all of us had been through serious trauma and many had skirted death.  Now we faced a future that was totally unlike any we had ever envisaged for ourselves and full not only of frustration, pain and difficulty but stalked by the dangers that accompany being paralysed.  As one veteran of a high cervical injury put it to me, “Being unable to walk is the least of a spinal cord injury”. From various places and backgrounds, we were united in our predicament and this allowed full and frank discussions, the likes of which are usually off limits in any situation – never mind whilst you are eating.  We talked of pressure sores, bowel movements, sepsis, nerve pain and urinary infections whilst spooning in lasagne with peas or apple crumble with custard. I did also once have a conversation with one gentleman about erections but this was at least in the gym.  I’d also like to point out it was NOT instigated by me. Only a few of us were quadriplegics with limited or no hand function and the paraplegics happily helped us cut up our food or, in some cases, also helped spoon it in for some who had no hand or arm function.  This took one task away from the nurses who could then go and feed those still bedbound and also ensured that, in this unit, nobody suffered from either going hungry or having to eat their lunch stone cold.