Well, following Richard’s post, I can not add my bit albeit with somewhat less aplomb. I have never tried to share my experiences before. As Richard said; only I really know… or at least that is what my damaged brain tells me.
I had a ‘cold’ in Dec 2015.
Being a typical man, I disregarded my loving wife and continued my 90 hour week as always in that month including the absurdity of a family trip to Sydney and a high pressure US trip for Raytheon. Points on the BA Gold card… so, I cooked Xmas dinner as always complete with trimmings etc and that cough just would not go away.
Dec 27 I agreed to be ‘hassled’ by Kim and go and see the on-call GP. This was, as was proved to be lucky, at St Mary’s in Paddington. I never saw the GP. Instead I had an SCA next to the lift. That was my last memory of 2015; “I think I need to sit down darling “…
Little did I know I had raging pneumococcal pneumonia which had gained sepsis to help it to basically kill me. At the time my lungs were 90% damaged. 6 rounds of CPR ensued after my wife screamed and got a Dr out of the ladies room. I got to visit the special room normally reserved for the Royal Family and was in an induced coma for several weeks.
That was the easy bit !
I woke up and everything was a bit different… I too had that pesky Action Myoclonus thing, otherwise known as Lance Adams Syndrome. So, I essentially went from retired RAF Fighter Pilot, decorated senior officer of 20 years and senior engineering Manager to a 2 year old baby. I hit myself in the head with my spoon when I could pick it up. Could not stand, forget walking.
So, there it was. Life over. I too dreamed about suicide innumerable times when in the Charing Cross Neural Rehabilitation Unit (CNRU). Every day was another failure to meet my own standards.
What next, I hear you ask ?
Piracetam and lots of it, dampened the shaking and jerking. 8g, 3 times a day at that time. The maximum. Lots of physio and eventually release 24/3/16. With wheelchair. Special toilet seat, handrails and swivel bather. Daytime tv as per Richard and eventually Physio/ OT outpatient care.
Quite a lot of despair and utter rejection of love ensued. Amazing who you can hurt, just because they care… I discovered that Alcohol makes everything go away… life, love, hope. No one needs them huh ?
Clearly, that’s not the end; just the start.
We now live in Sydney, I have loads of nephews and nieces to spoil. I catch every cold going because I have no immune system, Myoclonus never goes away. I get scared of crowds, transport and anything that changes my routine. I’m blessed because of what I have now. I might have changed; but that’s all. My wheelchair is in my Mum-in-laws garage.I’m a house husband who bakes a mean apple pie if he can avoid stabbing himself.. I have a 30 year RAF Reunion to go to next week in the UK and I shall.
This was originally posted into our Facebook group (October 2017) and received such a warm reception we thought it worth publishing to a wider audience.
Firstly, please don’t view into this post as me boasting and sorry about the length of it. I hope it may help others in the group.
My wife and I have just returned from a holiday, the first since my SCA 1 year 11 months ago. We booked a 3 week fly drive in North America, passing through numerous National Parks to celebrate us both reaching a ‘significant 0’ age.
Before going, I can’t deny that I had numerous concerns. Would I still be here, would I be legally allowed to drive, would I get travel insurance, would the holiday be ‘too much’ for my body, would the airport security checks be a problem, would the long flight be OK and finally would being at altitude during the time in the USA cause me problems?
A lot of my concerns were answered just before we went, the ICD technicians and my GP, both said for me to get out and enjoy it. My GP gave me extra medication because the prescription was due to run out during the holiday.
My insurance company was a bit more of a problem, two weeks before departure and after the ICD had undergone its 6 monthly check, they then sprung it on me by e mail, that they were happy to provide cover as long as the person responsible for my treatment said they were happy. (I chose to check with them that I did have cover for the USA with my declared condition because I simply do not trust insurance companies and I wanted something from them in writing in addition to their terms etc).
As I have not seen the consultant since my discharge from hospital, then who was responsible? To cover all angles I managed to get an OK from the consultant who treated me in hospital in time, (only because a friend of mine works alongside him). I told him exactly where we were going and what I wanted to do and the altitude.
The airport was no problem, the 10 hour flight was no issue at all. My experience of being at a mainly 6000′ above sea level in the USA for just short of 3 weeks turned out to be no more a problem for me than being at sea level. I actually went up as high as 10,500 feet. I checked trails and their severity before we left the UK and made a route before we left.
All of this took time and planning, but it turned out to be worth it. I accept that there were some places I did not consider trying to get to see, I knew the trail would be too severe. While going to those places I did go to, I just took my time and listened to my body whilst carrying 10kg of my camera equipment.
So what is the point of this post?
Don’t let the SCA stop you doing things, it’s a beautiful world we live in and you can still get out and see it if you choose to.
I am writing this post for all the right reasons in the hope it is well received and through it some people might sense the art of the possible. I am not writing it for any egotistic reasons or to solicit any endorsements for I have far too much humility for that.
I previously wrote a post called ‘ Dare to Dream ‘ in November 15 when the group was much smaller than it is today. Although I am not sure if it’s still available I suppose this is a follow on post from that ?
I had my SCA in June 2013 at 4am in the morning while fast asleep. A sleep I never woke from but my then partner Dawn for some reason of fate stirred, woke up and realised I had suffered from some form of catastrophic cardiac event.
She did all the right things by calling 999 and commencing CPR and eventually my heartbeat was restored with a defibrillator operated by a skilled paramedic. I know I am extraordinarily fortunate as indeed we all are who survive an SCA.
A week in a coma in ITU followed by a two month stint in hospital where my hypoxic brain injury affected most of my functionality for example my co-ordination was that of a toddler thus walking, holding a spoon to feed myself, washing or even wiping my arse was all beyond me.
Listening to someone speak and then understanding what they said was all but impossible and my memory was shocking. In fact I could retain data for at least as long as a Goldfish before having to ask people to repeat information again and again and again. I thus did abysmally on the psychological testing that all brain damaged people go through in order to know how badly they have been affected. I just could not find my way through the maze or put the brown bear into the cage?
I was thus diagnosed with hypoxic brain injury resulting in poor executive skills, poor attention span and poor memory.
I was bed ridden so I peed through a catheter and did a No 2 into a bed pan after which some unfortunate had to wipe my bum. Bet they loved that Job !
In fact I was a mess riddled with myoclonus (involuntary jerking) that was so bad one day I jerked so ferociously I landed on the floor next to the bed. For those who do not know Myoclonus is similar to when you are on the verge of sleep and suddenly for no apparent reason you jump. Only I did that all the time while awake or sleeping, and the muscle pain is considerable, akin to severe cramp. Give me a spoon to eat with and moments later it would be a missile because I had jerked. The ice cream I was supposed to eat decorated all the walls around me because I could not control my arm movements to feed myself.
The realisation that I was seriously damaged and it wasn’t everyone else being idiots smashed my confidence to smithereens and at that point if I could……..I would have killed myself. I looked at the ward windows with both fear and longing but I couldn’t get there because I couldn’t walk or crawl, so I planned my suicide and planned it again and again because 2 minutes after I had made a fantastic plan I promptly forgot it and had to plan it again, but of course then I would forget what it was I was supposed to be planning ?
It was indeed a very low time for me.
Two months later they sent me home with an ICD and a wheel chair and made arrangements for community physiotherapy and psychological re-evaluation. Six months later I received an appointment with a physiotherapist and shortly afterward a letter from the psychological evaluation team telling me my appointment had been cancelled. I immediately wrote back an angry letter cancelling any future assessment not realising that by doing so my hospital notes would forever state that I had hypoxic brain injury and needed an appropriate adult to accompany me on all future appointments ????
Sometimes I am such an idiot !
Six months after coming home I also received a shock from my ICD at about 4 in the morning. Subsequent investigations revealing that I suffer from mild sleep apnoea which may trigger cardiac irregularity. Just another thing really ?
When I look back on this period in my life I realise that Dr’s are skilled and wonderful human beings but they are not gods, and they don’t know everything. Unfortunately they are expected to know everything so when they are asked a question that they do not know the answer to they guess ?
Dr how long am I going to live ? Dr will my wife still love me when I get home ? Dr what are next Saturdays lucky lotto numbers ?
They will try and answer by giving a calculated guess based on what they think they know and what it is you are hoping to hear.
Well I asked questions that I have since forgotten together with the answers but what I do remember is how as a result my personal confidence was shattered, spat on and ground into a pulp. I thought I am alive but yet my life was over because now I am the village idiot (ever had that feeling ? I hope not) I left hospital brain washed with half baked opinions that I took as gospel because Doctors know everything and everything they say is true ! Reminds me of the theory of voodoo when I think about it !
By way of example I was told that you improve for two years and after that you have got what you have got. Simply not true you continue to improve forever long you live and the more you try to improve the more you will improve.
I was told that my mobility would not improve to the point of independence and I would need a person or carer to accompany me when I ventured out. Wrong ! My mobility has improved and I do not need an adult or carer to accompany me when I venture out. When in ITU my relatives were told I would probably die and when I didn’t they were told I would probably be a cabbage ?
Not something grand like Asparagus or a Truffle but a bloody cabbage?
I now realise that if you sustained hypoxic brain injury as I did/have then with time other parts of the brain take over that missing functionality. As in my case you may have to re-learn how to do things but you can re-learn and be as efficient as you once were. You really can !
To be fair to the Doctors my balance was blooming awful and once I became ambulant I fell over frequently, but as time has passed my balance has improved, so although I still fall over I fall over much less than I did which is fantastic !
Then again I am 61 years old and thus four years older and of course balance degrades with age but my cunning plan is to take up yoga (more of that later) ?
So why am I writing this post ?
Well after I had gone home from hospital and sat wasting my life away watching day time television for long enough I got a little angry. I realised that I had bought into the despair of having an SCA. That I was no longer capable, that I was forgetful and clumsy I got angry with the Doctors and nurses who implied how limited my life would be.
But most of all I got angry with myself for buying into these beliefs and for feeling permanently depressed, for wasting what years I had left watching Cash in the Attic and Bargain Hunt and for well………….frankly believing that my life was over and I was just …………waiting to die.
The truth is that this isn’t true and it’s a mistake to believe this rubbish ! Life isn’t over, indeed far from it !
After my anger had subsided I came up with a cunning plan and we sold or gave away pretty well everything we owned which was both a bitter sweet experience. It was hard parting with things we had owned for almost all of our adult life. Useless things that were mementos of some person, event or experience.
Note that all these things refer to the past !
But we did it, cried over the loss and then next day celebrated the freedom because everything you own sort of owns you back in a way doesn’t it ?
Now at this point I should say that I am writing this post on a table top in the saloon of a yacht that we bought in October 2015 and sailed with my wife, (yes my wife Dawn who last year I married on a beach in Australia ) from New Caledonia to Australia then Indonesia and now we are currently on route across the Singapore Straits to Malaysia and then Thailand
Having been told I had such a poor future I manage to undertake all the maintenance, service the engines, replace and tune electronics, plumbing, calculate routes and pretty well everything else that it helps to know when running a boat.
When I embarked on this journey I honestly didn’t know if I could do this or not because I still believed all the hype and my confidence was shattered. Indeed I didn’t know if I could fly half way around the world to even look at a boat I was interested in that was for sale. It was in a boat yard and I didn’t know if I would be able to climb the ladder to get onto it let alone sail it anywhere ?
But as doddery as I think I was I managed it and we bought it. Since buying it we have sailed it to some wonderful places and seen some wonderful things that if I remained at home I would never have undertaken or seen.
If I had of failed it would have been sad but then I would have taken up golf, fell walking, camping, gone to college to learn something new or whatever. I would have done something that gave me a belief that I had a value because it’s important to feel that we have a human value whether it’s in building a house, looking after the children or grand children or growing lovely tomatoes ???? in the garden.
As a side I take Bisoprolol to regulate my heart and my Medtronic ICD sits happily in my chest. I have a home monitoring kit which I plug in and charge up as and when I need to do a six monthly download, I can walk, run a short way with wobbling difficulty and remember my name and a few other things. I don’t dive but I do snorkel on the many reefs that we have anchored near and I have seen some wondrous things.
My stamina has improved because it had to, my balance has improved because it had to and my joie de vivre (love of life) is now as it should be.
I am writing this because I sincerely believe that far too many of us experience an SCA and believe the hype that we cannot or should not do anything which might endanger us. That life is somehow restricted and now dominated by hospital appointments, physical and most of all mental limitations that we impose on ourselves.
Utter crap !
What is the point of living if we let our SCA confine us to an ill state ? We worry about falling over in public or having an ICD shock in the cinema or feeling unwell at a party when these are all our own fears no-one else’s ? The truth is if you fall over most people are concerned and want to help.
When I told my Cardiologist I was buying a yacht and going off sailing he truly belly laughed. I often think of that when I go swimming off the back of the boat in amongst the Turtles and Clown fish or watch a perfect sunrise.
But when I asked him if I could do a tandem sky dive in no uncertain terms he vigorously and expressly forbade it, so I suppose there are limits ?
An SCA can ruin your life, it can destroy your confidence in yourself, it can take away your livelihood and test your relationships, it can leave you feeling depressed, suicidal, unloved, sexually inadequate, useless, helpless and hopeless.
We all know it can do lots of negative things ?
But you also can do lots of positive things because you are not dead you are still here and you………yes you……….have all the tools you need. You are alive, you have skills unique to you, you can think and you can do, and it’s a fact that most things in life that we consider impossible is because we haven’t yet tried them?
Oh yes the yoga ?
During my travels I have met many wonderful people one of which is a middle aged woman who taught yoga. Well in all honesty I felt a bit of a plonker lying on a mat bending this or twisting that amongst a group of ladies but I watched this teacher almost balancing on one toe while standing on the end of a pencil and my jaw dropped in awe ! I was sold on the obvious benefits so I thought as we are hoping to sail to Thailand where yoga is huge, and hopefully spend a while there, I am hoping to go to yoga classes to learn how to control my balance better ????
At least that is my ambition ?
I hope I haven’t made this all sound very easy because it certainly has been anything but that ! I have fallen off the boat some 10ft onto concrete and got away with grazing and some bruising. Fallen off the boat during the night in heavy seas and got tangled in illegal fishing nets. Got smashed to bits at the top of the mast when I had to go up there to sort out an emergency and came down looking black and blue and I have reached levels of exhaustion that have really tested my metal. I have clearly forgotten things and had to re-learn after mistakes were made but fortunately nothing terminal.
The rewards have been immense, but at times it’s been a hard thing for me to do but I do feel that my balance has considerably improved, my stamina increased and my confidence enhanced.
If you are like I was when I watched daytime television lost in the abyss of depression thinking your life is over then please think again because it isn’t. But you have to take that first step and as a clever Chinese guy once said ‘ Every journey of a thousand miles begins with the first step ‘
Whether it’s growing potatoes or spending a dawn watching the sunrise from the gardens of the Taj Mahal it’s up to you to take the first step ?