For the past ten years, to the present day, I have spent all of this time with some timescale of bed rest required in my day from the effects of pressure sores.
Pressure sores are the bane of the wheelchair users life. You are doing very well to avoid them at least once in your life. They are not to be treated lightly as my own testimony should confirm.
In 2016, I was working in an office in Lochgilphead for the Local Authority. I was experiencing issues with spasm in my back, often causing intense spells of excruciating pain. I was being sent home from work early on a regular basis while I awaited the results of neurological investigation.
I was experiencing a level of discomfort which caused me to shuffle and fidget regularly in my wheelchair as I attempted to settle a regular, pin prickly, burning sensation in my lower back.
One morning I woke up with a bloody stain apparent on my bedsheet. I thought nothing much of it and went off to work. Over a spell of a week, the wound was increasing in the amount of discharge it was exuding and developed an odour my wife took notice of, to be concerned enough about by the end of the week, to insist I see my GP. The consultation was muddied somewhat by other live matters concerning myself and the long and the short of it was that this wound on my buttock was left unassessed. There was another appointment arranged to see him the following week however and both my wife and I left the appointment feeling assured for having seen him, and we would raise the neglected issue next time.
Over the weekend, I began to feel very off colour and lost my appetite and had a great amount of lethargy and with a high temperature apparent. My wife eventually convinced me that I should be seen by A&E and that evening drove me to Lochgilphead.
The Nurse assessed me and my wound and she was immediately concerned that my wound was already necrotic. It was the first occasion I heard this terminology and it didn't register then how grave a situation I was already in. The events over one weekend in October were to ensure the word was just the tip of the iceberg. I was hooked up to an iv drip and the ambulance was reasonably short in wait time.
It was arranged I be transferred from Mid Argyll to Paisley by ambulance while my wife followed in our car. We arrived in Paisley at around 1 am to a typically rowdy, chaotic weekend A&E, and there didn't appear to be much of an orderly system of sifting through the patients. I was briefly assessed before being left to wait on a gurney. I was insisting on Pamela getting away as she was facing an arduous couple of hours drive home again. As it was, i waited some 4 hours on that gurney before I was moved to a ward, where I lay awake anticipating being assessed by the ward. No one attended to me. The sense that there was of urgency in Lochgilphead was not reciprocal in Paisley.
Indeed, the first I heard from anyone in the ward, was over breakfast on Saturday morning, saying I was being moved to Glasgow by ambulance. I felt no better or worse than I had on my initial arrival at Lochgilphead, and so I was confused I was being moved again and even more so that this decision had been taken despite no formal assessment having been taken in all my time spent in Paisley.
Within a couple of hours the porters arrived to take me to meet the ambulance crew taking me to Glasgow. Whether it was due to my condition or just through lack of sleep, or a combination of both, I was disorientated by now but knew enough to gather I was in the Queen Elizabeth Hospital, in a ward with head injury patients.
For the first time, nurses did physically move me on to my side to take a look at my wound. I do not recall seeing a Doctor/Consultant in all this time, neither at Paisley nor at Glasgow. I had not had a wound assessment in all the time since I left Lochgilphead. It was by now, the best part of a day since I was leaving Lochgilphead.
Everything thereafter is hazy. I can't remember being taken from the ward to surgery but I do recall being awakened by a blonde, Australian anaesthetist saying she was very sorry but my initial surgery had taken a turn and that I was now returning to have further surgery. I think I had enough time to say ok before being returned to a state of bliss.
I was in a dream state. I began to see strange visions of an altered reality. My wife recognisable in a strange animated version of herself, walking away from my bed, I am crying out for her not to leave me but she either was not hearing me or was ignoring me; former work colleagues and friends as nurses attending to me; I was often in a state of floating motion, silently above ground within a glass structure which resembled the St Enoch Shopping Centre in Glasgow, where I had worked for a spell in the 1990's, in Burton's. The French actress Catherine Deneuve was floating ahead of me as we followed the same apparent path, but I could never catch up to her; I was either in deep space looking down on the Rest and be Thankful and my home town of Inveraray from light years away, shocked from witnessing local scandal, or strapped down on a bed in the hull of a boat, going back and forth across the Irish Sea with friends dancing above me, not realising I'm below; I was at the bottom of a large slope of sand failing with every attempt to scramble up it; I was seeing visions of relatives and family members pass by my bedside ignoring me; my neighbours at home were constructing a maze; I was strapped down in a rail carriage (this vision was in black and white); I was having conversations with the sprinkler and air con vents above my bed; I was hearing water behind me, convinced I was teetering on the edge of the stern of a boat; I was seeing the Celtic FC crest floating; I was in Belgium in war time trying to form a brass band to play a concert in a luxury hotel; I even recall the moment of realisation and the wave of relief when I realised that I wasn't dead.
Three weeks I spent in a medically induced coma. It was often as frightening as it was utterly bizarre. I only learned when I came round that I had punched a nurse. I was aware every time I was given a liquid lolly to keep myself hydrated, aware of it being in my mouth and conscious of the sensation of refreshing water; I could tell when it was actually nighttime and daytime. Among the many visions, I was apparently aware of real life too, but I was unaware and shocked to learn of punching a nurse. Thankfully no damage done i was relieved to be informed.
I finally was brought round, literally on my way back to the ward from a procedure I assume to bring me back. I waved to my mother-in-law sitting in the waiting room as I passed on the gurney. Her look of astonishment mixed with delight was something of a surprise. I didn't have any obvious sense I had been away so long. I had no concept of the passage of time as such in a coma. Soon, my wife and in-laws were at my bedside and it was only then that I learned I had been in a coma for as long as I had been. I was oblivious to all I had been through (thankfully) and, more especially, (regretfully) what I had put my family through. Among the first words I was to hear were "Trump's President". Among the first words I was to mutter were "Put me back!" (Under anaesthetic!).
I learned the initial surgery had taken a nasty turn mid way through and had become a matter of life or death as sepsis and necrotising fascitis were both apparent in my blood stream, detected by the keen nose of an attendee. I owe my life to her incredible spider senses!
According to the NHS website "Necrotising fasciitis, also known as the "flesh-eating disease", is a rare and life-threatening infection of the deeper layers of your skin. It needs to be treated in hospital straight away." In my case, this entailed the removal of my entire coccyx. All my organs shut down with the exception of my lungs (my regular exertion pushing my wheelchair had probably saved those, my wife was informed) and I really was on a shoogly peg. My surgeons saved my life and I was so grateful for having the opportunity to thank them all personally.
I still required long term care in hospital while my wounds were attended to and I remained at significant risk of infection. I was eventually moved from a High Dependency unit to a Surgical ward in a room high above the city, which had views across Glasgow. I was on permanent bed rest and began regularly being turned from side to side to ensure I wasn't sitting in the one position for long.
I was very low in mood and had little to say, I hated being in the situation I was in, and thought about nothing else but I was also in a situation which reminded me of the aftermath to spinal surgery. I really wasn't sure I was prepared to go through another lengthy spell of recovery and rehabilitation again, knowing how difficult it was that first occasion.
My body was taking its own time to recover. I had no great appetite and was reliant on awful protein shakes for nourishment. I was unable to stomach much and had cravings for fast food but I could not keep anything down. I had one spell of around 12 hours where I could do nothing for constant hiccups. I was taking regular chest infections. There was little in the way of sleep. I was exhausted and both my tolerances and my immunity were equally low. It was constant frustration after frustration.
I spent Christmas 2016 in a single room in the ward. My wife and step son visited me on Christmas Day. The Salvation Army played Carols in the corridor as I opened presents from family. I had a new turntable to play which was instant motivation for me to recover fully and return home to play my vinyl collection.
How long this might take was anyone's guess. With my added complication of paraplegia, I required a number of physical and social assessments to assess my fitness to return home and that could only be when my wounds were compatible with the level of care my local District Nurses could administer out in the community. I was aware I could be many months more in hospital.
2016 became 2017 and the strains of Auld Lang Syne had barely died down when I took a secondary spinal infection overnight while I slept in the ward, which paralysed me completely from the neck down. I lost the use of my arms and all dexterity in my fingers. it was by far the scariest thing I had ever faced. My consultant from Neurology was called upon and I was soon on a high dose of IV antibiotics. There were a number of attempts to MRI for investigation, but I was far too uncomfortable lying prone on my back in the chamber, and while I had plenty of experience being in the machine, I was suddenly finding myself to be claustrophobic, and had to call a halt to a number of attempts; it eventually took my wife to be sat by the scanner talking to me, for me to lay still for the full duration of the scan.
Thankfully, the IV would eventually help restore a range of movement and dexterity in my arms, albeit reduced, which remains the case to this day. I continue to feel the impact from reduced sensation and struggle with *Dupuytren's Contracture especially in my right hand
*typically caused by neurological conditions (like stroke or spinal cord injury) leading to severe muscle spasticity, or by localized tissue disorders.
Eventually in April 2017, I was well enough to be moved to be more local to home and was transferred to be an inpatient at my local hospital in Lochgilphead. Here I was rehabilitated for discharge home but found that my ability to self transfer and mobilise had been curtailed by my recent spinal infection and I was without any core strength to rely on. There was far more to work on than I had anticipated. This wasn't going to be the brief stay I had been anticipating.
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