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A Fox Lake Blog

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. 

10 replies on “For Better, For Worse”

Reading that I felt a mixture of delight to have you back and on such excellent form and horror. You may have invented a new genre. Great to hear your story. Therapy Today (the worthy mag I receive every month…not at all like Campaign) would benefit from an article on surviving ICU and the NHS. Onwards to tap dancing and welcome home.Lx

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