The Inner self of truth - Second anniversary !!!

When my friend, Lise' and I set up my blog I was determined that it would not be a sympathy request, but rather an insight as to the positive side of rebuilding a life after SCI. I, with all my intentions, have hopefully relayed that message throughout my journey !! All of your support has been absorbed with gratitude and an amazing amount of influence with regards to the ongoing quest to find my legs again......... Gearing up to my second anniversary of my injury, where my life changed " forever ", for the now, has changed my perception on all things in life ! Firstly, that none of us are immune to life changing events and secondly, live in the now and love in the now ! At any given moment life can take it all away - never regret ! And never forget to appreciate what we have. I clearly remember the 7th of November 2013, and a day which I will never forget either. I woke up as usual, with a normal days work ahead ! Jumped outa bed, SSS, and left for what I believed would be - just another day. How wrong I was. With a break in assignment lots for work, I popped into the office. It was there that the onset of this journey began. With no adverse symptoms, no indication of anything un-toward, something went horribly wrong !!! Suddenly, my boss, my colleague and my friend, Jo, was holding me up against the wall - my life was being taken away from me..... My body caving in on me, distant sirens, Sebastion the bulldog at the office exerting his Alfa male assertiveness , Eilene running up and down the road trying to direct the pre ambulance medics to the office - all the while, Jo, holding me up with constant words of encouragement !! " don't leave us "..... There's too much to do, and probably the words which will ring in my years to come " you have not told the people you love, that you love them "...... Thank you Jo, forever grateful ? His calm, yet assertive approach admirable and indicative of the control needed in a serious situation ! Fully conscious of what was going on around me, unyet not able to control bodily function ! Scary stuff ! Loaded into an ambulance, sirens blaring and off to A & E at the Royal London Hospital. Thankfully less than a 20 minute journey. Arriving to a team of medical specialists who had been radioed ahead. Still conscious of my surroundings and faculties, I was treated as a stroke patient and put onto the relevant pathway. Having been privy to records in hindsight, and I'm no doctor, perhaps more investigation into my injury was needed - my opinion ! Waking up to pod of specialists around my bed all " arguing " as to weather or not I was a stroke patient or a spinal patient ? I recall so clearly the sheer fear of not being able to move any part of my body, not being able to talk as I had been intubated, and the slow but life giving sheeeeew of the life support machines keeping my completely paralysed body alive. Still to this day, I believe that medicine and its related technology can be a cruel twist of fate. I no longer believe in the Hypocratic Oath, and strongly believe in allowing ones demise rather than having to psychologically deal with an injury that renders you completely dependent on others to care for you !! Having said that, I cannot fault the unbelievable treatment bestowed upon me by the NHS. I was given 48 hours to live. I made it !, then another 48 hours reprieve ! And, shit !!! I made it !! My kin folk having been mobilised from another continent expecting to be arranging a funeral, but in between vague hazes of consciousness and the ever sounding life support machines my body refused to give in. For another blog experience, I still believe that I died three times, but again, technology over-ruled !!! So, as a " mop " here I lie in a too sterile environment with a spinal consultant admitting that I should not have been put on the stroke pathway and given blood thinning agents !! This has caused the paralysis and caused the blood to exit the spinal column in various places ! Oh great ! I remember thinking - easy for them to say now ! Whilst I lie completely lifeless but for a moving head !! My mind completely whole, and understanding. Five months might not seem like a long period, but try it on a hospital bed, being turned every 3 hours, constant florecent lights and a nurse at your side 24/7, with no body function, and someone literally telling you when to breath, wee or poo !!! The thoughts of long term not even an option at this point. No control of anything below the head, and NO answers from the specialists ! An in humane way of dealing with those left on the "other " side. My parents had flown half way around the world to find a " corpse " with no input as to where I would eventually land up ! A huge gap in the system is a market to explain the why's, if's and eventually of the patient !! Just a simple explanation of what might lie ahead would do leaps and bounds for those on the " other " side of SCI. Nobody tells you about bowel and bladder control. Nobody tells you about skin maintenance ( our biggest organ, so undeniably the cause of pressure sores ) etc etc etc. I spent 5 months in the RLH, readying myself medically for my transfer to the Spinal Rehab unit at Stanmore. A huge leap in the right direction, and a privilege I will never forget ! That was to be my " home " for the next six months. Initially, one is given about eight weeks, but my presentation required further investigating, and I landed up being there much longer ! I bonded with the nurses,and was assigned my " mentor " Chrissy, a ditsy multi coloured hairdo who shadowed me full time, thought me the ins and outs of SCI, and became a friend for life. Adam, Kerry and many more of the nurses and sisters became my "family ". The OT's and Physio's my salvation, and the wonderful consultant, Angela, who would promise me nothing more than standing !! We have an unbelievable bond whereby I have challenged her with her expertise and told her I WILL walk again !! Again, I reiterate, that this is not a sympathy blog, but rather a realisation post of the challenges faced by SCI people, and the mere facts of daily living with an injury like this. To clarify, I am a C1, Incomplete injury, which in essence should mean that I am just a head with no usage of arms or legs ! A mop, lying in a bed, being fed by someone else etc etc - destined for a care home where one is put in front of a TV for the days entertainment !! My worst nightmare - and at " mop " stage had already made up my mind that was not gonna happen ! Life is not easy, but then, life is a lot harder for a lot of people ! It is too easy to wrap ourselves up in the "Woe is me" blanket ! Let's get out there and embrace what we can do rather than what we could do ! All changes and challenges are for a reason ! We can question, but the answers might be right in front of us without seeing them ! Look hard, question not and believe,trust and don't judge !! From the cripples chair, I send this with love, and ongoing good health wishes !! G.

The Truth, The Honesty !! The Reality !!!!

Coming soon !! My 2 year anniversary ! My emotions ! And the mistakes made !?!?. We have to live on !! The truth to come. Regards G.

How to Work the System - it's an ongoing " Learning Process " !

My week has really ended well. Firstly, yesterday I received a call from the Back Up Trust to confirm that all boxes had been " ticked " by the relevant " powers that be ", and I have been officially accepted to go skiing in Sweden in January. For the first time since my injury, I will be subjecting myself to an experience whereby I will be engaging 100% of my time to be with disabled people on a one to one basis ! Something that in the past, I had always tried to avoid. Not wanting to acknowledge, believe, accept....... Call it what you like, but here I am going away for a week with complete strangers who are in similar conditions as I find myself in - for the moment !!! The confirmation in itself, has left me excited, privileged and more accepting of what can be achieved against all odds ! It's an amazing program set up by an Olympic skier who had a SCI, and built a resort in Sweden to accommodate disabled people only ! The project is admirable, to say the least ! A fully adapted aeroplane, to get you there, complete with personal carer, in house physios, adapted resort throughout etc etc etc......... I so forsee a " Mr Bean " kinda scenario of us cripples being put into bath tub sort of mobiles and pushed down the slopes !!! Will make for a good You Tube video called " Bladder, Bowels and Black runs " !!! Secondly, the amazing win SA had against Wales today. Go Bokke !!!. Have now got my carers very interested in the game of rugby. Rameez, my Pakistan, Muslim weekender, arriving with the weekend fixture and daily regime revolving around what time the games are on. The polish fill in also joining in, with no clue as to what's going on, but shouts and screams when we do !!!. Talking about the Jeeves, just when all seemed to be in place, and running smoothly, we had a wee incident last week which could have catastrophic effects on my long term endeavour to keep all four of the chain working !! After a particularly long day out, having pushed the Italian to the limits, and returning home to the primary Jeeves - an argument broke out about a coffee cup having been left on the drying rack that had not been put away !! Yes.... I kid you not !! I swear, the hardest thing I have found with this condition has been trying to manage and keep carers happy !. So, this pathetic squabble starts, and I feel my BP rising, and I lose total control !! I very, very seldom lose my temper, but enough is now enough !! I vent my frustrations, scream and shout and tell all concerned that I am sick to death of their " childish, school girl " behaviour !!! Everyone storms off in a huff - numerous emails to the agency etc etc, and within earshot of all of them I call up my co-ordinater at the agency, and tell her to please go ahead and source new carers all round ! So...... The links in the chain could start being replaced ..... Will keep you posted. So...... The foghorn hooter cum speaker is charged again and the Italian and I set off for the mall. Doing a " run through " at Tesco's, we come across a guy pushing his kid in a trolley with his pants WAY below his bum. Indicative of today's fashion trends. Only, he is probably my age, has the fattest Arse in town, and looks totally ridiculous ! I tell him so, over the lod hailer - the Italian runs away !! Then we stumble across a man " talking " to the scented candles !! Yes ! - so I decide to answer him from behind the cover of the stand !! - what a joke !! Will keep you updated ! With love !! G. Xxx

Gotta just lov' em !!

So here I am again, talking and sharing MY experiences again ! Well, I suppose that's what blogging is all about !! However, I do feel somewhat ' self indulgent ', but here's the next one anyway !! Was woken up by Karol ( fill in live in Jeeves ) this morning, for the normal start to the day. A tedious regime of not again wanting to bore you with the details !! This Jeeve could perhaps be the next long term, forth link to our ongoing saga of completing the chain of care ? Who knows, time will tell. He is a slight guy, Polish, very plesant, slow, but could be trained up to the standards required by my selfish self. He, himself was involved in a chainsaw accident four years ago, and lost three fingers on his left hand. Initially daunting, but I have come to realise that his ability to overcome his adversity is admirable !!! There is nothing he cannot do, and his attitude is remarkable - a good lesson learned, and to see him chopping onions for diner prep etc etc is encouraging !! So at this stage it's not ' the blind lading the blind ' it's the ' cripple leading the challenged ' So, today started with the dentist. The NHS agreed that given my 5 months of mouth cleaning with iodine based liquid, my stained, corroding gnashers needed some attention ! I had a home visit from the dental care specialists, then called into the surgery for a further assessment ! Then today, another assessment by the dentist who is going to put into place the program of fixing the problems !!! Totally, unsuspecting of my humour, acceptance and refusal to accept things, I wheel myself into the small but adequate cubicle where I am to be ' programmed 'for my ' Tom Jones ' smile !!!! My susceptibility to AD, being in a chair, amount of prescribed drugs etc etc all proving a problem...... He wants to talk to my Consultant at Alcatraz first !!! Fair request , from him, agreed....... But he got a bit edgy when I said " anesthetise me, pull the whole lot out for I care, drill new ones into the jaw, porcelain of course, save what you can...... But let's get this shit over and done with asap !! " Do me in the chair, for all I care, but let's get it DONE !!! - he is gobsmacked !!! Cannot understand why I am willing to good order full hog to get it done !! So, bottom line up comes a treatment plan, evolving weeks of visits to the dentil clinic to gradually restore the existing teeth to acceptable standards !! Only after they have consulted with Stanmore. I await the letter for my next summons !! Will keep you all posted !!! There is Jens B-Day lunch, lunch at the shard, the Charity show etc etc etc to fill you all in on, but have to run now..."..""." All coming soon now !!! With love G.