You join me today, some seven years on from my previous post, on a lengthy period of permanent bedrest. In 2016, I took a pressure sore which became infected and, but for the knowledge, skill and quick reactions of the NHS, well, I may not have been writing this now.
The infection, once known as the flesh eating bug, nowadays, yeah no less doom laden, as necrotizing fasciitis (NF) was ‘sensed’ during routine surgery by a specialist wounds nurse on the surgical team. In short, routine surgery became major surgery, as surgeons battled to, literally, save my skin.
I had gone to the Doctors a few days before, shivery, the colour washed from my face, normal viral symptoms for me. Appropriate medication duly administered. The next day (Saturday) saw me lose appetite, lethargic, sick, temperature raised. If it had been left to me, I would have left it until the Monday to go back to the Docs. My wife insisted we did not wait until then and drove me to A+E. My wife saved my life too.
What had been no more than a spot on my buttock, with a slight discharge, a few days before, ultimately resulted in me having to have my coccyx removed, sacrum area and an extensive area of one thigh exposed. I continue to have these wounds dressed today. Like my spinal surgeon in 2006, these surgeons had no idea where their work on me would end. Leaving infected tissue and bone behind (on my behind) their greatest fear.
I was to be in High Dependency and Intensive Care in a medically induced coma for some three weeks, blissfully unaware of the multi organ failure this infection (sepsis) caused, and all the activity, concern, worry and uncertainty around my hospital bed.
Dreams, when comatose, seem on another level to those you experience during regular sleep. More vivid, lengthy. I had never had recurring dreams until then. All of a similar theme. From the otherworldly to questioning whether you are actually awake; vivid visions of the people you love the most, apparently by your bedside, but making no sense whatsoever (what’s new?), in bizarre scenarios – from neighbours running an army assault course business(?), to me observing earth from thousands of light years away, floating, witnessing suicide bombings, rubble-strewn streets, floods, armageddon – I was always either floating around thousands of feet above, or at the bottom of a pit, observing, often frightened. I remember many of those dreams to this day.
Perhaps the most bizarre experience was seeing Glasgow Celtic crests intermittently floating around in my minds eye. When I came round, I mentioned this to my father in law who told me my designated nurse had ‘mistaken me for being a Celtic fan’ – I think family skullduggery was the real cause – and insisted on my listening to their games radio commentary, until my father in law decided (the time had probably come) to correct him.
The sprinkler system head and vent above my bed often took to speaking gobbledygook to me. Indeed, much of what I experienced in my dreamlike state, in later conversations with my wife, she could relate back, often vaguely admittedly, to what was actually happening and being spoken about in the ward.
How lucid I was, I’ll never know. But, I recall differentiating between night (they were always scary) and day and I will never forget the realisation I wasn’t dead. I felt a massive relief. How quickly I actually came round i’ll never know. My first real sense of awareness was returning from a scan and giving my waiting wife and mother in law the thumbs up. I have no recollection of going down for the scan. Among my wife’s first words to me were “Trump’s President!” N’ah, I was still under. Talk about waking up to a nightmare.
I’d spend Christmas in a surgical ward. Early indications suggest I be transferred to another hospital for skin grafts, but in the early shoots of 2017, I take a spinal infection which causes paralysis from the neck down. I am suddenly faced with further potentially life changing surgery, not to mention the loss of the use of my hands. Months of antibiotics would return some arm function and hand dexterity but reduced function generally remains today. All the while, my wounds continued to recover, my transfer to plastic surgery postponed.
At a later consultation, my neurosurgical consultant would confirm the Spinal infection likely resulted from the surgical work required on my coccyx. He had never seen another case like mine. He eased my fears somewhat by also confirming that all that could go wrong in my spine, had now occurred. Now was the time to face up and challenge what life had in store. I remember speaking to a nurse, relating my spina bifida to a dormant volcano. For the first time in my lifetime, I had the feeling my spina bifida was about to erupt.
In all, I would stay in hospital for some eight months. The staff were never less than phenomenal but I have never, mentally, been so low, and took all the self doubt, negativity, uncertainty and anger out on those I loved the most. Why anyone would want to visit me… ? I couldn’t face visitors, music, books, food, the things I loved most, for any length of time. I would often lie in my, by personal choice, darkened room, willing sleep as it was the only way I felt I could escape. I couldn’t get out of bed, back to hoists, catheters. My left leg now as numb as my right. I fought to keep my self propelling wheelchair. An electric or a travel chair being deemed more appropriate. But my consultant is correct, things can’t have gotten any worse. That is of some comfort.
I would leave hospital in May 17. Going home was such a boost though filled with continuing uncertainty regarding my health and quality of life. My treatment continues at home, I remain in a hospital bed and for the very first time in my life, my health dictates my day to day itinerary. I have questioned what have these past twelve years, my wheelchair years, and all the adjustments made, been for?
Just seeing my, now late, pet dogs reaction to my return from hospital, a moment to savour. That’s what it’s for. I’ve had many more since, despite the ongoing frustration.
There has been so much for my amazing wife and I, and our stoic families to get heads around. There were times we all questioned our ability to cope. We raised our voices, got angry, tears and snotters when we felt we had to. I spoke with counsellors, took the anti depressants, practised Mindfulness, often questioning for what?
For family, that’s what, for the joy of life. In the last ten years, in my wheelchair, I feel I have been able to achieve and gain. An incredible wife and stepson, moving rural, continuing to work, my new friends, my old friends, travel. Life.
I think today marks another breakthrough in my recovery. To be able to talk freely, openly, publicly and succinctly (I hope) about something which remains raw, bringing my own story up to date… I’m feeling good about that.
Yes, I remain in bed, open wounds, physical and mental, continue to be dressed and addressed, my wife remains, arguably and to my regret, more so my carer than my wife. It’s by no means ideal and while it remains raw, we prepare for setbacks. We have learned to look no further ahead than today. What used to feel all encompassing now feels manageable.
Our ability to absorb what life throws at us is often underestimated, dismissed even. Our response often taken for granted. We just get on for the sake of getting on. I think we should give ourselves a wee bit more credit for our ability to absorb, adapt and ultimately survive, if not thrive, from adversity.
In 2018, we have been able to enjoy a lovely summer, trips in the car to local beauty spots, or just down my main street for an ice cream. I read someone suggest just ten minutes a day in nature really invigorates a mindset. I live in a truly beautiful location and nature has truly been a healer, I have even paid attention to Monty Don and the Beechgrove Gardeners – my wife found great solace and comfort, while I was in hospital, in preparing a garden we could both gain so much from when I finally got home. Our new dog has been learning flyball, competing successfully with his new teamies all over the country. I have called in for help and advice on charities closest to my situation. It is a great comfort gaining a network. A dear friend has been running on behalf of, and raising an incredible amount for, Spina Bifida and Hydrocephalus Scotland. My stepson, through all of this, has, nevertheless, became a world champion and made his way through Uni to his Masters.
I cooked seabass successfully and a passable crumble! It felt like my Masters. I have enjoyed putting together my blog. We have enjoyed bbqs in the garden with family and friends, impromptu music sessions in house with friends and a dram, precious time with friends and family I may not have had but for the skill, perseverence and professionalism of everyone involved in my care. It has collectively been another ironically invigorating experience to be a part of.
To coincide with the onset of autumn, the ‘ber months and’ the gateway to Christmas’ as my wife likes to call them, and with a new phase of my dressings treatment being administered I have been on permanent bed rest since late August, in a concerted attempt to heal what remains of my wounds. Its no quick fix. Estimates of the remainder of 2018 in bed and maybe then some time in 2019.
I’m relearning the enjoyment of reinventing myself, adapting to bed living. It’s no longer a relief to go to sleep. My love of reading and music have returned. I am enjoying visitors again. I have picked up my sketchpad, been learning some Spanish, researching some family history, enjoying precious family time, watching box sets, listening to some great radio, reconnecting with social media.
I had no idea I would write this. For the first time I have just let the pen flow. I now agree, it is the best way to write. It is also a cathartic experience. Acceptance of everything that has occurred in the past couple of years has finally dawned on me. I’m only too delighted to have you share that with me.
I am blogging my own unique experience of spina bifida to highlight a relatively little known yet no less significant condition to those born with the condition and their families. I hope that my experience can offer a positive view of life with spina bifida.
Photography: Bloggers own
I support and fundraise for https://www.sbhscotland.org.uk/ @SBHScotland in the exceptional work they carry out across Scotland, in a challenging funding environment.
Throughout 2018, my friend Stevie Thomson has been running on my behalf for the charity. His considerable efforts have been met with such generous pledges and kind messages of support. The link is here
Further donations are always welcome and greatly appreciated.
Please see these links for further info, contact details and how you can support and be assisted by this vital, donation led charity.
Thank you for reading