First and foremost let me state that before the following events unfolded, I was a normal, fit and well, 40 year old, with no history
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Me and Jo,
happier times! |
of sickness or mental ill health, who had, over the years, spent very little time away from work, a hard-working individual who was just starting to make good for himself and his family,(on a work basis, promotion, personal development etc.) who led a very happy home life, mainly focused on my wonderful wife and young son and a small group of terribly brilliant friends!
If I were to ask the average person "what's your definition of pain?" (Not to suggest that any one person is average of course, we are all unique) a high percentage of answers would probably be bordering on the more commonly encountered forms of accidental pain (trips, slips, and falls), headaches, broken bones etc.
Of course if you were to ask the question in a more specific manner, in other words, "what causes pain?” And I would suspect a fair percentage would say "something that hurts!"
Fair enough answer.
If you were to ask a medical professional the same question, "What causes pain?", and I'm pretty confident when I say that they would give an answer along these lines, "we don't really know, we don't know enough about pain, how pain develops and potentially what triggers pain in certain situations!"
The medical professionals I have met over the last couple of years have all given very similar answers, much to my surprise I might add. The world of medicine does not know enough about pain: how it manifests itself, what causes it (in certain situations or circumstance at least), and how to treat the differing situations that people find themselves in, when in pain.
These might sound like very extreme or just plain odd answers, which
don't really instil confidence. Nevertheless, they remain, in my
experiences, true. How many people know the different classifications of pain? Not me, that's for sure. The two sorts I do know are: controllable pain (the type of pain that can be cured with the help of drugs or surgery for instance or might have a specific treatment regime like physiotherapy) and then there's chronic pain!
"What's that?" I hear you say, well chronic pain tends to be very deep rooted, very long standing - longer than six months duration. In general it has several differing symptoms such as muscular and nerve pain, emotional and physical trauma and even psychological symptoms.
Sounds a blast doesn't it? But of course the reality is completely different, believe me, I know.
Why should you believe me? Well I'm one of the 'lucky' ones! I suffer with chronic pain 24/7, day and night. I live my life on a cocktail of drugs made up of, 'Gabapentin' (used for nerve and muscular pain 3200mgs a day), Diazepam (used for muscular pain 2-4mgs a day), Diclofenac (a muscle relaxant 150mgs a day), Tramadol and Zamadol (both painkillers 100 and 600 mgs. respectively a day) and 'Morphine' (in oral form, up to 40 ml a day). I am also taking 150mgs of Sertraline (anti-depressant).
All of these drugs, taken as a cocktail, help me through the day and provide a certain amount of control over my pain and shall we say darker thoughts bought on by my chronic depression but and I stress, the key word here is control, NOT relief!
Consider some of the potential side effects from said cocktail; such as, Terrifying Abnormal Dreams, Suicidal Behaviour and Passing Out, Shock/Sudden Circulation Failure, Confusion & Anxiety, Heart Palpitations. The list goes on and on as you can well imagine, makes for scary reading doesn't it!
And yes I have and am currently affected by some of these side effects, some have passed, suicidal thoughts for instance, at least for the time being, while some still linger, for instance confusion/anxiety, heart palpations to name just a few.
It is a constant battle not just with my dis-order but the added Bonuses that come with the medication and heightened emotional state I and my body are in.
As I write these words, I'm in chronic pain, at a level that is just about bearable. I can use my iPad (it's been a saviour, I might add. It has helped change my life in general). Initially the iPad allowed me to surf the internet and check emails (due to my incredibly severe lack of mobility which stopped me using our desktop computer), that then progressed to the Angry Birds phenomena all from the luxury of my favourite floor space, but more importantly as time went on has enabled me, through an App to keep a Daily Journal, something I have never done before, I might add, but incredibly liberating if like me you struggle to express yourself to others, and get out your feelings and thoughts.
Being able to express myself in this fashion really has helped me cope with a mentally tough situation such as this.
This whole account might take me many months to write, depending on my pain levels, due to the way the pain restricts and narrows my concentration and focus levels, to be perfectly honest both are almost non-existent , but I combat this by doing little but doing it often.
How do I keep going when the pain has been with me for this long
(25 months and counting)?
The truth is the pain will probably be with me for the rest of my life, at some level at least, and you have to find ways to help cope, keeping a journal is one way. But most importantly, I keep battling, pushing back so to speak, controlling the pain NOT the other way around, and I have the love and support of some very special people in my life.
I think it appropriate a time to introduce the people who have stood
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Me and my most
excellent son 'Ryan'! |
by my side through all off this, through thick and thin, held my hand when Ive needed to be guided and have shown unwavering support from the very beginning. My wonderful wife Jo and my equally wonderful son Ryan, my personal pillars of strength and inspiration, my dearest Jo who from the start has never wavered in her love and commitment to me, Jo is my very own land living Angel and is the very reason, along with Ryan, why I have continued to battle and resist and push through the hardest of times.
Im sure you will agree when you have read through, just how much they have meant to me and how they have inspired me to carry on. why am I writing these words you may ask? Well I have a story to tell and I would like to share it with those of you that might be interested, or suffer the same way I do, day in day out. I hope you will read on but that is entirely up to you.
2. The Monday Morning, black and blues!
A typical Monday morning happened to be the starting point for
all of my current problems.
It was Monday the 15th of February 2010 to be precise. I was simply preparing myself for another Monday at work when I bent and felt
something 'give' in the lower part of my back.
This as any bad back sufferer will tell you "hurt like hell!" and rendered me immobile for many minutes. When I was finally able to regain some mobility I levered myself up and sat on the edge of the bed waiting for the pain to pass. Jo fetched and fed me some run-of-the-mill painkillers I finished dressing, hopped in the car and drove to work hoping that by going to work I would be able to work it off. More fool me!
I completed the 26 mile trip to my place of work, parked in my usual spot and prepared to exit my car. When I tried to get out my car, I couldn't. The pain was unbearable. I finally managed to prise myself out and crumpled to the ground. To cut a long story short, I was driven home by a colleague once home I promptly arranged to see my GP, Dr. Rock. Once Jo arrived home (came home from work early due to my situation), off we went to see my doctor.
For the sake of continuity and to protect the identity of those
involved I will assign a false name to each of the medical
professionals that I will come into contact with through the course
of my journey.
Dr. Rock initially believed that I had slipped or herniated two of my 'lumber' discs, Nos 4&5, he seemed to think that both discs had slipped and twisted. He gave me a regime of 'Tramadol 50mg four times a day with strict instructions of rest and recuperation for two weeks. He also told me at the time, that if the situation didn't improve that he would be organising an 'MRI' scan to probe deeper. He then promptly sent me home.
Dr. Rock is a very genuine, caring Doctor of the highest order, close to retirement, though you would never guess, and has never wavered in his commitment to help and heal me through the last twenty five months; he has a much practised manner with his patients, firm but very understanding with a curiosity level much unequalled. Even though a strict patient appointment time schedule dictates, he makes time for his patients and very rarely runs to the allotted appointments. I believe when he eventually retires the medical fraternity and patients will sorely miss him.
One course of 'Tramadol', plenty of R&R and two weeks later, back to work I went. I wasn't one hundred percent, but I was there or there about's. During the trip to work I instinctively knew that I had over reached myself. Something just didn't feel right in my lower back.
Needless to say about an hour into my day, I had to come home. This time my trip home involved a 'Transit Van' and its cargo space, I arrived home very much worse for wear as you could imagine.
Yet again my darling Jo left work and came home early to take me on a trip to see Dr. Rock. This time I was truly in a great deal of pain, I couldn't bear to be in one position for too long and lying prone on the waiting room floor was the most comfortable position I could manage. It was truly unpleasant lying on a floor in a busy doctors waiting room, let me tell you. There are all sorts of things on the floor in a doctors waiting room, and the looks from people; it's a mixture of pity and annoyance. They couldn't forgive me for being in the way while they stood in line. I felt a sort of "sod you pal!" attitude emanating from most people as they tried to queue around me.
This visit lead to the MRI scans, which Dr. Rock had threatened me with previously, being ordered and appointments made. I had a referral to the local community clinic for 'bloods' and a course of physiotherapy, the Orthopaedic type.
While I was waiting for my appointment dates to materialise; and
in this country under the NHS, you can wait a very long time; my physio from work came to see me. He just happened to be a friend of mine. He explained all about herniated discs and the different treatments. He then embarked on a course of 'acupuncture', (all in his own time I may add) after work hours. He instructed me to perform a series of exercises to strengthen the core muscles associated with the lower back.
While the acupuncture really didn't have much effect, the exercises
did. After a few short weeks I found myself repeating these exercises hourly, and things were starting to look up. But worse was to come, much to my dismay.
3. Just call me “The Human Apple!”
One morning, a Tuesday I believe, after completing my exercises, I
found that I simply could not stand. I kept collapsing back down to the floor, almost like gravity was pulling me down constantly. I found myself laughing at the whole ridiculous situation; the absurdity of it was incredible. There I am one minute on my feet, in a fashion, the next my body just literally collapsing under itself. This led to me being almost exclusively on my back with my legs elevated and in severe constant pain.
Initially the pain overwhelmed me for many weeks, it scared the hell out of me to be completely honest, and those weeks turned to months. This in turn led to very low mood swings and I mean very low (Im not going to spell it out, use your own imagination
and you'll picture my decent to some of the lowest points and
considered actions you can imagine), the depths I reached, being in constant pain and literally immobilised and the emotion that a situation like this generates is quite incredible, just a constant barrage of ALL of your emotions come tumbling out on a daily basis as soon as you open your eyes in the morning. I'd say I had a 95% mobility loss. It was completely dependent on Jo for everything from peeling the duvet away; because I just cannot move when first awake, to showering me like you would a dog. The list goes on. And my wonderful wife just rolled her sleeves up and dug in, simply an amazing woman my Jo, just amazing!
4. “Happy Feet!”
By this time the Orthopaedic physiotherapist, had come through with my first appointment. When the day arrived, off we trotted to the appointment. One thing to mention is that by now, two months in, I was starting to drag my feet, especially the left foot and leg. Needless to say the Physio took one look at me lying on the floor and at my struggling mobility and he was very concerned. When I tried to struggle through into his clinic area, he had to, with the help of Jo man-handle me, literally lift me through, he could quite plainly see my inability to control my feet and use my legs. I collapsed to the floor in his clinic area where he could plainly see me wrecked with pain. He was extremely concerned, so much so he sent me straight to the local Hospital, Hospital King, for further care and assessment.
5. Morphine, Yes Please!
After struggling through rush hour traffic, we arrived at said Hospital. By now I was in severe pain due to the extended time spent in the car. Of course when we arrived, even though the physio had phoned ahead, nobody knew anything about us, apparently no communication between the shifts, which had just changed, really poor, so we were made to wait in a cramped waiting area inside of the ER. I literally had to lie across several chairs to get comfortable much to other peoples disgust.
Eventually, after much heated and plain speaking by Jo to the Hospital staff, somebody took an interest. I was administered a dose of Morphine, (the good stuff), and examined by the duty Doctor. He then duly hospitalised me for further tests and examination. The following day I had a MRI Scan on the ' Lumber' section of my spine.
Having an MRI scan, for any people who have not had the pleasure is ridiculously scary, being slid into, what can only be described as “a very small diameter tube”, an MRI machine represents a very real claustrophobic experience and considering the time spent inside the belly of this machine 30 minutes + can be very frightening experience. I could feel the panic starting to rise around about the two thirds mark, represented by a prolonged pause in proceedings while the machine realigned itself.
I spent two days and three nights in Hospital King the first time around, I experienced a severe lack of care from the hospital during
this time, being forgotten about come meal time for instance and not once being asked or offered any help with washing or showing, bearing in mind my mobility was at this point severely reduced.
I was very genuinely made to feel like a time waster, a faker and
completely ignored for most of my time there. I had to kick-up a fuss and complain about the lack of care but this only led to, if completely honest a little more animosity towards myself.
The doctors eventually decided that, yes, there were two herniated
discs, (lumber 4 & 5) which were apparent on the MRI Scan that had been completed upon being admitted. Unfortunately for myself, in their opinion the discs in question lacked a level of severity that required surgery, were they would shave of the extended diameter (herniated) parts of the discs, thus removing any excess pressure on the nerves. A pretty straight forward operation I'm led to believe, with a 6-8 week recovery time, YES 6-8 WEEKS, remember this recover time scale for future reference. (I also suspect a distinct lack of funding for cases on the fringe, much like myself, but I'm purely speculating in this regard).
I wonder if the situation would have been different if I had been on a private health scheme.
One can only wonder!
The Hospital, after a very bizarre and complicated explanation from the attending doctor, sent me home with a carrier bag full of tablets. This bag included Paracetamol, Tramadol, and other over-the-counter painkillers like Co-Codomel and Codeine Phosphate along with lactulose (helps with bowel movements when taking large quantities of drugs).
All the tablets combining proceeded to constipate me terribly. My level of constipation reached the point where I had to harm myself to take my mind of the constipation. I'd never experienced anything quite like it, and I know pain really quite well. For obvious reasons I dropped several of the tablets to ease any further suffering and needless to say their impact on my back pain was only minuscule to say the least, this simply was not good enough.
This is the point in my story were things start to get interesting.
After my disappointing visit to Hospital King, I was simply referred back to the Orthopaedic Physio by the Hospital.
Upon my next visit he yet again he found me laying on his waiting room floor. He yet again had to physically, with the help of Jo, man-handle me into his clinic. Still unable to help me in my current state due to the lack of a diagnosis and believing that there was a lot more to my condition than first met the eye, he proceeded to contact a Spinal Surgeon, who he knew personally through his referrals, at Hospital King. The physio strongly believed that the potential of paralysis was a very real possibility for me, hence his second referral to see the Spinal Surgeon a Dr. Bodge it.
He was obviously disappointed in my first visit to Hospital King, and the lack of investigation performed and interest shown, he urged Dr. Bodge-it to see me immediately due to his concerns therefore plans were made for me to see him the following day during his clinic at hospital King.
We are now creeping up to the three month point of my journey.
6. Death by Dickey Bow!
I visited the Spinal Consultant, Dr. Bodge-it, the following day.
Initially I was left to wait on a hospital 'gurney' for over two and half hours, yep, two and a half hours. When Dr. Bodge-it finally appeared, he swept into the room with all the grace of a Rhinoceros. Now after all of this waiting around, the long car journey to Hospital king and the anxiety that comes with being in pain and facing the unknown commodity of a new Dr., I was in severe pain as you would probably have guessed, the kind that makes you sweat and grit your teeth and potentially want to pass out, that kind.
Dr. Bodge-it, on first impression terms, wore a Dickey Bow, sported a Goatee and projected a lofted air of confidence and intellect, which to be honest came across rather intimidating.
Now this particular consultant is apparently very well respected and very good at his chosen profession, a veritable 'genius' you (I have since talked to several people who have been to see him and he has simply been marvellous in helping them to a full recovery).
Not quite so marvellous for me though, as you are about to find out.
Upon entering the consultation room, 'Dickey Bow' and all, he asked for a situation update and proceeded to look at my recent X-Rays.
He then asked me to stand up, I did to the best of my ability, and my best at this moment in time was something akin to 'Quasimodo' but slightly worse. He then demanded that I stop, and I quote, "messing around and stand up, there is nothing wrong with you, what are you playing at?" He proceeded to leave me standing there in a great deal of pain I might add, while he continued to vilify and berate me he also explained that there was nothing physically wrong according to the MRI Scan of the Lumber Area. Yes they showed the two herniated discs, but they were not herniated enough to have realistically rendered me in this position.
In his opinion my MRI Scan showed that my spinal discs were fine and the herniations bore no real relevance .He then continued to berate me and my situation as being, “false you're putting it on, stand up, there's nothing wrong with you!" and classless one liners like “I see 10,000 patients a year, what makes you so special?”. Which as you can probably understand left me in a great deal of distress, anxiety, not to mention pain. He seemed to take particular umbrage with every reference made to the spine, during our appointment as a personal insult and turned verbally aggressive at every mention of the spinal area.
What a lovely morning myself and Jo were having! Upon seeing my obvious distress he suggested that he admit me into the hospital for further examination and assessment. He then promptly left "Dickey Bow" and all.
A nurse appeared with a wheel chair in tow and wheeled me onto the
hospital ward to which I had been assigned to.
Now I do believe very strongly that because Dr. Bodge-it could see no inherent physical problems on the MRI Scan that had been taken, meant therefore in his opinion I didn't have a problem, or at least any problem that he himself would be prepared to tackle, Dr. Bodge-it couldn't Pigeon Hole me, place me into a category of specific treatments that would cure or at least ease the problem. This need to Pigeon Hole patients comes across, at least to myself and Jo, as almost a need by some medical professionals to be able to help, its almost to the point that if you don't fit into a category they cannot help you or are unwilling to dig or delve due to their own professional restrictions, maybe money restrictions put in place by the Government for instance or its simply not in their remit, so find somebody else to help. Now Im not suggesting for one minute that every member of the medical fraternity behaves in this manner because they don't, in fact I have had the pleasure to be cared for by some simply astonishing people as you will see for yourself as my story unfolds, but I do believe it to be a problem.
Would Dr. Bodge-its attitude have been any different if I had have been a private patient? Who knows, but I certainly suspect it could have been.
What would you have done in this given situation? How would you have reacted to such obnoxious, aggressive and distressing behaviour? Would you have, like me, allowed anxiety and emotion stress to take over and level you in a wash of pain and self-pity or as an individual would you have applied yourself differently? Would you have been able to?
7. Taking the Michael! NOT!
Now just so people understand or get the picture, this is not a case of me, sitting at home on the sofa, drinking Tea or swigging Beer whilst playing Video Games all day, sticking two fingers up at the world as some people would potentially assume or believe, “swinging the lead” in other words.
This is a very REAL situation that I have found myself in, and my family for that matter. A situation that has found me at various stages throughout, lying flat out on my back, (for months on end), with my feet elevated. Immobile to such an extent that Jo has to peel the bed covers off me first thing in the morning because I am in so much pain I cannot move let alone lift a heavy duvet. Ridiculous I know. Living my life on the floor and the only way to get about, albeit painfully, is on my hands and knees. Being in so much pain that my mood has soured and been driven so low that suicide seems like the only choice, (in fact if it had not been for Jo and Jo's ability to pay attention, I may not be typing these very words), removing ALL medication out of my reach.
I think this is more a case of the world sticking two fingers up at me! What do you think?
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| My very own 'Land Living Angel'! |
8. Nice Hospital, shame about the lack of care!
This particular appointment started to set the tone for future interactions with the medical profession and their general lack of belief in me, and my ever-increasing condition.
A reluctance to investigate deeper/further, or probe into my condition started to emerge. Also the general attitude towards me and my symptoms started to emerge, one of “a time waster”, and “a faker”, a label which started to stick by word of mouth, as you will see later, but a label which was, and still is, incredibly hurtful and completely soul destroying and more importantly just plain WRONG!
I was labelled a time-waster, a faker by a professional medical institution, one that as human beings, me and my family rely upon for care, that should in our opinion, provide an unbiased, discreet and dignified environment of care.
Three days I spent in Hospital King this time around and not once did I receive any further investigative work or testing of any kind. In fact I never saw Dr. Bodge-it again.
Bearing in mind, as I stated early I could barely get onto my feet because of the collapsing condition that had emerged. The only saving grace was the convenience of the Wet Room and Toilet which just happened to be three steps away (my bed was up against the wet room wall), good job because NO help was forthcoming at all, either in the form of staff or mechanical aid (Walking Stand/Crutches etc.).
I received NO help with washing first thing in the morning and basically gave up on receiving a decent meal of any sort, Jo had to bring me in something to eat every day due to their lack of attention or poor meal choice, (when the Hospital staff remembered to include me meal times).
The other patients in the ward with me, there were four per ward, could not believe the Hospitals lack of attention or poor care towards me. Every day they would ask if I would be receiving any further investigative work and every day I had nothing to tell them. I did shout the odds at one point during my stay and state
my displeasure with the level of care this led to one of Dr. Bodge-its under studies coming to see me and explain that in their opinion there were no requirements for any further testing/probing and that my discharge was pending. Believe me, the word was out in this particular Hospital that I was “a time waster, and a faker”. I was becoming desperate to be discharged. As you can probably start to understand my overall condition was still deteriorating while in the care of Hospital King, NOT improving.
The irony of all of this was the visit of, at the time I didn't know who the Dr. was, a Neurologist onto the ward to see one of my fellow patients who was also suffering with his back in some way. I would actually be seen by the same Dr. who would examine me and get “the ball rolling” towards a diagnosis and the care and attention I so desperately needed. A Dr. who actually believed me and my symptoms!
Jo my "land living angel", as she was beautifully described by a close friend, prepared a letter of complaint. It was 6 pages long, outlining all of the current events to date and the poor treatment received. We then proceeded to send this to our local MP and the 'Peoples Charter' representing the Hospital.
I continued to keep my GP, Dr. Rock up to date and firmly in the loop concerning all developments. He managed to, with some persuasion and explaining of the situation to the appropriate people, have my previously ordered MRI scans pulled forward, mainly I might add due to the availability of a mobile scanning unit at my local clinic. He insisted that they carry out a FULL spinal MRI scan as opposed to just a scan of the 'Lumbar' region which had obviously been covered by my last visit to the hospital.
(Below is an excerpt from my personal diary!)
"Slept like shit, up 5 f#%king times, that's morphine for ya. Dehydrates me
terribly! But I needed it after last nights pain carnage. Couldn't
communicate, left me completely immobile, couldn't even control my
'slobbering' from my saliva glands, due to that bloody 'Buccal Nerve' the
doc. Told me about, acting like a built in 'barometer' for my pain!
Put simply I just hurt at the moment, must try to manage my ever
increasing pain levels, and avoid any more "could collapse" episodes.
Hope Jo takes it steady today because of her troublesome back, heavy
shopping bags again me thinks.
Need to lay down NOW!"
9. Six is the magic number!
The results showed, and there were three scans completed on all parts of the back/spine 'lumbar', 'thoracic' and 'cervical, that I was in fact suffering with six herniated discs, yep six not two but SIX, strangely enough there were two discs in each of the three areas of my spine. Six painful discs, call me lucky.
On this evidence he quite rightly referred me to a the 'Neurological'
team at a completely different Hospital, Dr. Rock was obviously very, shall we say upset with the level of care I had received from Hospital King in the past.
We needed to know the potential damage, if any, to the nerves running through the 'Spinal Nerve Channel'. There was always the chance that this Hospital, Hospital Queen may decide that there was enough reason to warrant some form of treatment to the herniated discs, all six of them!
10. I must cancel those dancing lessons!
My initial appointment for assessment by Hospital Queens Neurological Team dropped through my door with a date set for the last week of May 2010, thats now four months in and still no diagnosis. Please keep in mind that each and every day without some kind of treatment was another day of chronic pain, lying flat on my back all day on my own, while Jo was at work trying to keep the pennies coming in, isolated from the outside world!
You may ask, “How did you eat or get yourself a drink if you were
lying flat on your back, immobile?” Well the truth is Jo would make me a packed lunch and a flask of tea which Jo would leave by my side within easy reach, that's how. Every day Jo did this, that's going on for over one hundred days and counting!
We arrived at Hospital Queen for my appointment, with Jos father Malc in tow for moral and assertive support. One and a half hours later Dr. Syria arrived. My initial assessment was taken by Dr. Syria, the same Dr. I first saw at Hospital King. Dr. Syria is Young, energetic and very knowledgeable Neurologist with an excellent bedside manner.
His initial assessment went along the lines of limb mobility, strength and resistance, reflexes, polished off with a display of me on my feet. Jo nearly freaked when he lifted my legs, one at a time, and asked me to lower them to the bed slowly, and each in turn just dropped, like the proverbial lead weight with the biggest thump to the mattress, I had no control over both my legs, believe me, my beloved freaked big time.
Dr. Syria then asked me to stand up and walk, so he could view this strange gravity condition which had now developed. Instead of being able to just watch and view he found himself, along with Malc, having to carry/lift me, bear my weight in a very bizarre show of me trying to walk under my own steam and failing terribly.
As you could well imagine by the time we had finished I was in a terrific amount of exhaustive and severe pain and Dr. Syria looked
completely at a loss. He suggested that I be admitted to the Hospital
as soon as possible (which is kind of what we were all hoping for, by this point four months in I was desperate for a diagnosis. No Diagnosis=NO treatment=CHRONIC PAIN EVERYDAY 24/7.)
Eight weeks later, I finally received a phone call from Hospital Queen to say that they had a bed for me, so of we went.
11. Simply having the time of my life!
I spent seven days and six nights in Hospital Queen and I have to say, without a shadow of doubt, they were quite possibly the worst days of my life in forty years of being alive.
On being admitted to the Hospital Queen and up until seeing the
Neurologists for the first time, everything was going just 'peachy', and then all hell broke loose when they finally made an appearance several hours later.
One thing I feel I must point out is the small fact of companionship and support that Jo has given me, because her love for me is so strong and my suffering and despair so great that without Jo's love and constant support my situation could and probably would have been much more severe. Jo's love is reciprocated back without any hesitation. A true “Land Living Angel” is my Jo.
You see the thing is when people, in any given situation, and I firmly believe in particular the medical profession in my case or anybody else's for that matter because of their importance, don't communicate or at least read your case notes completely they just end up covering the same ground time and time again, treading water if you will, and of course this was the case in my situation.
So they started to cover the same well-trodden ground straight from the off. Now when they reached the point in proceedings that Orthopaedic Physiotherapy was suggested as a form of treatment I
couldn't contain my frustration any longer and went all 'Rambo' on them, in other words I was VERY impolite and my frustration just started to flow out of me, immediately upon opening my mouth I realised I was wrong to do so, my frustration nearly got me thrown out, discharged, and left me apologising for several days after. Not the best move that I have ever made I must say!
This prompted a visit from the Neurological Consultant himself, a Dr. function, who very politely explained to me the error of my actions and the outcome that could have followed. Once again I found myself apologising for my error, which Dr. Function seemed to feel was a very sincere apology and convinced that I would not react in such a manner again, left. Now Dr. Function was a very intense, almost scrutinising person who radiated authority and intellect but most importantly concern for his patients.
I was subjected to several nerve tests over the course of my time spent in the hospital. One in particular stands out where I was hooked up to a power source and electrocuted, in a fashion. Electricity was passed through one of my big toes and into my brain to check for possible nerve damage. All good fun really!
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Trying me NEW wheels out
for the first time! |
I also found, much to my dismay or it could of course have been complete coincidence of course, that the time waster/faker tag” had followed me to this new Hospital, due to a very real lack of care or consideration with getting about for instance to the toilet or for a wash and again being included at meal times, several times I again found myself without meals.
The real problem though was my lack of mobility, the Hospital staff would not allow the use of my wheelchair or offer any physical help whatsoever which left me with crutches. No
wheelchairs allowed crutches only!
I'd never used crutches in my life, so you can imagine the difficulty and distress this caused me.
One particular Ward Nurse, Nurse Ratchet was really incredible hostile and generally unpleasant towards me, she had “faker” and “time waster” written all over her face whenever she decided to glance in my direction. Nurse Ratchet generally reminded me of my long forgotten mother, spiteful, full of contempt and judgemental, If you were to look around the ward at the patients that were my neighbours there was a certain amount of obvious visible evidence on show to allow a certain amount of understanding and forgiveness towards this perpetuated attitude, people with Brain Tumours and Alzheimer's Disease and Parkinson's Disease, incredible ill people every one of them, which made me question my own illness in relation to theirs. But I came to the conclusion illness is relevant to that specific person and
should not be judged against others illnesses, so in my own way I was and still am incredible unwell and no one person should be treated ANY differently to another in Hospital or by a member of the medical profession, or am I just being naive? I really do not know!
But this lack of care and due diligence was not the biggest nightmare I faced. It was the Physiotherapists that I was asked to work with. Now bearing in mind that I had not received and was still awaiting a diagnosis, I found it very odd that Dr. Function and his team had decided to go down this path without any factual evidence that this form of treatment would be of any benefit to me. But, down it I was dragged!
12. Hell hath no scorn like a Physio!
Now I didn't realise that there are different types of physiotherapy,
the two I know off being, 'Orthopaedic', (muscular/physical injuries etc.) And 'Neurological', (nerve/function related injuries).
The Hospital sent their team of 'Orthopaedic' Physiotherapists to see
me to help try to help with my mobility issues, to generally get me up and about.
The two Physiotherapists were young ladies, early twenties possibly, one dark one blonde, one Scottish and Bolshie (the dark hair one) and the other (simply firm and demanding).
Now I understand that in their line of work being firm and demanding of their patients need to go hand in hand to be successful, but I didn't realise being downright aggressive and unsympathetic along with unprofessionalism were also part of their job description.
The initial sessions were okay, with Bolshie and Firm teaching me the fundamentals of using crutches safely and successfully, how to get up on my feet using the crutches to walking up and down stairs using the crutches, I found these early steps to be very beneficial. The problems started when on the fourth day of being in Hospital Queen, bearing in mind I would be in the Hospital SEVEN days in total and the time spent with Bolshie and Firm was only one twenty minute session a day and I had only seen them TWICE in four days. Bolshie and Firm decided that they would get me up and walking within the next forty minutes of
allotted appointment time. Interesting! Did they know something I
didn't?
Now they were not to know that I would only be in the Hospital a
further three days, or were they, but regardless the following physical and heightened emotion stress coupled with the steep rise in pain, really quite severe levels the two of them would cause me, through poor judgement and a rash sense of urgency on their behalf, in my opinion was totally and utterly unforgivable.
On their third visit they basically had me walking around the ward using BOTH crutches, difficult and extremely hard work on my behalf but the next logical step in all likelihood. This didn't bother me unduly at first until the real sense of heightened pain kicked in during the night and continued into the following day. It would be their next and final session where the damage would be done.
On Bolshie and Firms last visit, which took place during evening visiting hours, Bolshie was the only attendee. She seemed to storm into the ward, almost as if she was in a rush or had just had a ticking off, and came rushing over to my bedside, totally ignoring and lacking any respect for my mum and sister who happened to be visiting at the time, and in an aggressive manner rushed me out of bed. She then proceeded to tell me we would be trying just using ONE crutch to get about on.
So to recap, this was her fourth visit, two visits spent teaching the
basics, one spent trying both crutches and then the next visit, number four straight onto one crutch.
This treatment by Bolshie and Firm, to me at the time, and still does to be completely honest, felt like a numbers game, they had to reach their targets for the week.
Do these actions seem like a numbers game to you, or just somebody trying to prove that I was indeed a “faker” and a “fraud!” by getting me up and walking in under an hour and a half.
Anyway off we went with me on just one crutch. With all of my weight now flowing down just my right arm and through my right hand, my pain levels started to rise quite considerably straight from the off quite literally I was balancing on one crutch, how I didn't hit the floor is a miracle in my opinion.
My whole right hand side of my body, after just a few steps I was
completely awash with pain, I was simply dragging the left side of
my body along because my left leg was unable to support me, increasing my pain with every step. Not that Bolshie seemed to care or even notice because she shot off at such a pace she simply left me behind. I simply made my way back to my bed as best I could following in her wake.
On finally returning to my bed my sister informed me that Bolshie had taken one of my crutches away stating that she would look after it until my discharge. The thing is that was my crutch not the Hospitals, mine. As far as I was concerned she had stolen it, I went absolutely Ballistic and kicked up such a storm demanding my crutch be returned immediately. Off popped one of the ward nurses to retrieve my stolen crutch. Several minutes later Bolshie returned with my crutch, now instead of offering a simple explanation and trying to calm the situation an almighty row/exchange of pleasantries ensued, hardly professional behaviour in my opinion by Bolshie, in fact I and my family were completely shocked, so much so my sister jumped straight in to defend me and to give her own opinion on Bolshies behaviour.
In my opinion ALL medical professionals should be considerate to a patients pain levels, but I suppose when you've been tagged “a faker” and “time waster” these considerations go out of the window to try to prove a point.
Of course this approach completely backfired and simply set me back weeks in my recovery. After Bolshies visit and the ensuing unpleasantries I was simply alive with pain so much so that by the time Jo came to visit I was , to put simply sobbing into a towel in hysterical pain.
The distress I suffered kept me awake all through the night, the nurses gave me all sorts of different drugs to calm me down and try to help me sleep, none had any effect, I was in quite a mess come the morning so much so that they cancelled any and all further visits from Bolshie and Firm. They had simply hurt me really quite badly both physically and emotionally.
Further down the line I am referred to a 'Neurological' Physio at the
same hospital, and he is quite shocked and appalled at my apparent mistreatment, but that's a bit later on in my story.
Finally the lead neurological consultant came to see me Dr. Function to give me his diagnosis. In his opinion my problem was one of a 'Neurological Function Disorder in and around the lower back, in other words a communication problem between the nerves and the brain linked in with my emotional state, if my emotions change from calm at any given time my pain rises, like walking on a razors edge, slip one way or the other and pain can just explode through me.
My next step according to Dr. Function was to be referred to a 'Neurological Physiotherapist' at the same Hospital a person I will call Physio Hope. He also advised me to ask Dr. Rock, my GP, to refer me to the Chronic Pain Team who are a specialist team outside of the Hospital who could help me with pain control and advise on the appropriate course of medications to be taken.
During my stay in Hospital Queen I was visited by the Acute Pain Team, very considerate, understanding people who made time to listen and understand my needs, their primary task is to help patients control their pain and advise on the appropriate medications to be taken.
They are an internal team of people, operating solely on the Hospital wards, and the counterparts of the Chronic Pain Team who deal with purely outpatients.
On my seventh day in Hospital Queen I was discharged around dinner time to finally be allowed to go home, a week of torment finally over, my relief was really quite uplifting!
Now just to refresh the time scale I am coming to the end of June 2010, five months. Five months from bending to reach my work clothes to finally be given a diagnosis, now hopefully things would start to improve and move forward in my treatment and on to my rehabilitation.
How wrong I was!
(Below is an excerpt from my personal diary!)
"Better nights sleep, I think the new memory foam pillow is helping.
Fed up today, feel like just jacking it in completely, calling it a day, done,
enough!
Tired of the constant pain and discomfort, lack of help from the NHS and
their slow so slow approach to matters, also what the future may bring
frightens me; I mean what am I good for now? Because I don't know,
really I don't!
Just can't shake/get out of pain at all, all day, all night!
Levels starting to rise again, it's just pure insanity at times, NO! all of the
time. Can't do physicality any more, would not survive, though I haven't
made it through this situation yet!
Tired, really tired of life at the moment. Tired of being frightened, tired
of being nothing, tired of working above and beyond, and for what, nothing
that's what! No tell a lie, this! Neurological Function Disorder, pain, pain,
lack of life, lack of mobility and more pain!
At least it's keeping me away from the rest of the world, and from any
kind of manual labour!"
13. My very own personal BFG!
Several weeks passed filled with pain, anguish and a sense of being 'left to rot' by the NHS, until the first of my referrals came through for and appointment to see a Neurological Physiotherapist at Hospital Queen at the end of, the 24th to be precise, of July 2010.
Come the 24th off to see Physio Hope we went.
I am very privileged and extremely fortunate to have been placed (and still am I might add) under the care of Senior Physiotherapist Hope at Hospital Queen. He actually specialises in the neurological side of Physiotherapy. From the very first meeting with him he has always had the utmost understanding and complete believability in me and my situation. Simply Outstanding!
Physio Hope is a very patient, firm yet fair type of Physio who instilled hope and confidence in myself and Jo that there would and could be “light at the end of the tunnel!” He was absolutely mortified and a little astonished at the treatment I received at the hands of Bolshie and Firm from my stay in Hospital Queen.
After everything we/I, myself and Jo, had been through, Jo being
constantly at my side, in such a short space of time, here finally, other than Dr. Rock, was a medical professional who actually sympathised and completely understood my condition. He completely believed in ME!
The sense of relief for myself, I can tell you was simply uplifting and greatly eased my emotional anxiety; the sense of finally being believed in was an amazing release of pure emotional stress, anxiety and pain.
He explained my disorder to myself and Jo, and likened it to that
of a Computer having its 'Programs' deleted. In other words, without programs telling the computer what to do and how to do it, the computer will simply sit there and hum away at you. This relates to the functions of the mind, nerves and muscles not working together correctly as a team.
If I were to simply ask a person, "how do you take a step?" I'm pretty
sure they would simply suggest that they put one foot in front of the other.
Absolutely! I couldn't agree more with that statement.
But the reality is that we take for granted the work of the nerves, mind the muscles and the interconnection of all of these parts of the body to work together, in a co-ordinated attempt, to take that step. In other words we take for granted that which we cannot or do not understand or cannot see.
With my Physio Hopes help and guidance, we have been able to re-establish/retrain many of my missing basic functions for instance, rolling on to my side (bearing in mind up until now I have purely been living flat on my back) and from rolling to my side to then levering myself up into a sitting position. As Physio Hope has explained and always maintained to both myself and Jo, my recover will be made up of very small steps battles and victories and will take some considerable time to reach my end goal of a near normal recovery.
Physio Hopes methods and conditionings in relation to re-teaching my body, muscles nerves and the mind to start to work together again as opposed to the opposite working against each other, he has been simply astounding, a true genius in my mind. Physio Hope along with Dr. Rock have so far combined to become part of the cornerstone of my recovery (from a medical point of view at least), Jo, Ryan and my closest friends aside are of course my mainstays, my closest allies.
You see, I was never going to be a simple, straight forward, pigeon
holed type of patient, it needed someone to step up to the plate from
a medical viewpoint, and take an interest.
Fast forwarding to the present day for the briefest of moments, with Physio Hopes help and encouragement, over the last nineteen
months he has taught me many controlled techniques of movement and through these teachings we have been able to re-program my mind so that the most basic of movements can be completed in a nearly pain free manner.
Even so with these small successful steps forward even after nineteen months of incredible hard work and achieving Physio Hopes targets, I am still unable to sit in a comfortable chair (the settee for instance), I can edge sit on a hard chair for several minutes leaning forward (perch), but cannot stand up for any real length of time and as for walking unaided well we are yet still a considerable way off even attempting this, I am currently experimenting with crutches and walking poles to help with the re-training and re-establishing of this most precious of movements but I'm currently only able to take a handful of steps.
One point of worth that is needed to be made, is one of length
 |
This is how I have spent a majority of my
days since day one! |
between visits, I dont see Physio Hope every week or every month for that matter, my body and emotional stress that becomes prominent, simply could not stand up to that amount of punishment that comes with being under a Neurological Physiotherapist and the demands he places on me at every visit.
This may be an odd statement to make because after all Orthopaedic Physiotherapy is envisioned to be the tougher of the two physically on the body, what with all that pulling, stretching and exercising but don't you believe it, you can take my word on that.
Think about it for a moment, just take pause before reading on!
I can now stand up on the spot, as I stated just a few sentences ago,
only for a matter of seconds in reality, but never the less that was a massive step, one of the biggest so far. Jo's eyes simply lit up when I managed it for the first time (while I struggled with an innate sense of vertigo and tried not to hit the floor). We have achieved more and more with every visit. The retraining is coming along slowly, step by step, patience is indeed a virtue but ultimately very satisfying.
The pain is still a massive problem, this is one area obviously that
Physio Hope cannot help me with in general sense terms, he can try to train me to move pain free but cannot treat pain with medication, this is obviously not in his remit. Physio Hopes remit is improved mobility not pain management, which to be fair he has stated right from the beginning and made no attempt to hide this fact.
But the pain, bloody hell, the pain is and can be completely consuming, like my worst nightmare replayed time and time again.
If you were to imagine the worst pain you have ever experienced as
an individual, pain that was so all consuming to yourself, a level of pain that you just knew you could not stand any longer than was humanly possible; on a scale of one to ten grade that level as a level ten. Please don't think that this is an exercise in belittling your pain experiences it is the only way that I know to explain my next point, my apologies.
So, think of zero as no pain, normal if you like. Done that? Good, it's not pleasant when you think about it, pain that is and how it has effected your life over the years, but trying to grade your pain experiences puts them brings them into stark focus, don't you think? Not pleasant thinking is it really?
My pain levels never drop below a four and frequently rise past a ten. Not possible I hear you say. But consider this, the medication I'm on, the thirty six tablets a day, which I covered right at the beginning, plus extra Morphine and Diazepam if needed. Despite all of that pain management, my pain levels can and do, rise to a level that can leave me completely immobile, unable to communicate, ever fibre and ounce of will power goes into trying to control my pain level, to stop myself from passing out. I often have to hurt myself to deflect the pain, almost trick the mind into focusing on a different issue within my body. So I'm pretty sure you'll understand my claim to be off the Scale.
The first time that Jo's folks witnessed me at my worst to say they were shocked, scared and at a loss to help me is being rather civil about the experience, which for them must have been quite harrowing to see a family member slobbering onto the bedroom carpet (until a towel was fetched), unable to move, even lift a hand, or communicate with them, because put simply every ounce of energy that I had was going in to controlling pain.
It was easier to slobber than try to swallow; I was simply in that much pain.
14. “A near normal recovery!” with a dose of Arthritis for good measure!
I received an appointment to go see my Neurological Consultant, Dr. Function that diagnosed my disorder earlier in the year whilst in Hospital Queen.
I was still waiting for an appointment from the 'Chronic Pain Team; it was purely a follow up meeting to assess my condition.
Now Dr. Function really knows his stuff hence head of Neurology, the meeting went very well, he assessed my improved mobility through the help of Physio Hope, and arranged for a further or follow up set of MRI Scans to be carried out to ascertain the current situation in my back. All in all his assessment was very positive and in his opinion the possibility of a "near normal recovery" was achievable.
What's "near normal recovery" though? Yet again a seemingly broad scope statement/assessment, I'm sure you'll agree!
A week and one phone call appointment later, and I'm on my way for a full set of MRI Scans to all three sections of the back (Lumber/Thoracic/Cervical, remember). This is the quickest turnaround to date by the NHS (in my case) for an appointment. Just goes to show when a Consultant gets his "hands dirty", in this case personally arranging an appointment for one of his patients, the 'gears' turn faster, marvellous, simply marvellous!
The outcome of these second set of back MRI Scans revealed some
very interesting findings.
First and foremost the two sets of two discs located in the 'Cervical'
and 'Thoracic' spine areas had receded enough to not be a real factor anymore, at least not for the foreseeable future, good result! The interesting developments appear in the 'Lumbar' area of the spine. The two discs that were herniated are still a problem in so much as they are now showing areas of 'tearing' and 'scaring' on both discs, in other words they are in a little bit of a mess. The new area of concern which showed up on the Scans is the 'Nerve Channel' which runs parallel with the spine itself and houses the nerves, obviously. The scan showed an 'Arthritic Growth' within the 'Nerve Channel'. Now we all know, at least I think most people understand that Arthritis only compounds itself and in turn becomes more problematic as time passes by. Happy days!
How much of an impact is this 'Arthritic Growth' having, I hear you say? Well nobody within the medical fraternity seems to know for sure. Not very reassuring I can tell you.
Do the "math", Arthritis + Time + Poor Levels of Mobility = probably buggered at some time in the future, and I mean buggered! When nerves are restricted or 'pinched' things stop working, at least that's what my life experience has taught me.
Just a point that I need to make before we move on; be assured that
all the time that I am left to wait in between appointments and with no real guidance or assistance on how to manage my pain in place, each and every day of my life is spent soaked through in pain, 24/7 no time off at the weekends or bank holidays either. In other words I'm very much left to rot by all concerned. Rot away pal, rot away!
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| Jo and Sister Tara! |
15. Chronic by name, chronic by nature!
It just so happens that my appointment to visit the local 'Chronic Pain Team', they happen to be situated at another local Hospital, Hospital Arrow, arrived with my first appointment schedule for the middle of September 2010, eight months in, for an evaluation.
About time I reckoned, I really needed some help with the pain, bearing in mind other than the Acute Pain Team at Hospital Queen which I saw only a couple of times, I hadn't had any specialist focus from the medical profession since then. I really, really needed some help with the pain!
My initial assessment with the pain team was, shall we say 'lively'. Yes, I think that fits. I saw the pain Consultant, a Dr. Scarper, himself which was a bonus; well at least I thought it was. His apparent lack of preparation, reading my notes for instance, towards me and my specific case and condition was to be frank about it, crap!
Now this approach, this lack of preparation considering the amount of information readily available about me and my dis-order (Jo has a three inch thick folder of information and test results etc. at home), really aggravated and frustrated me right from the start of the assessment. My point being, would you try to assess a person without some prior information or knowledge as to their disposition? I know I wouldn't. I'd want to be in a position to help them as quickly and efficiently as possible, to ease their particular pain symptoms. No not this chap!
He asked me to explain to him what I thought was the problem! Reverse psychology perhaps. Well as you might well believe this completely exasperated me, especially after everything myself and Jo had been through to this point, and unfortunately my frustration came to the fore, this release of frustration led to me basically telling him exactly what I thought. How he should be telling me and if I knew what the problem was I probably wouldn't have been there to see him.
Of course out came the indignation of being "spoken to like that (in a plain and open manner, not at any time disrespectfully), “I don't have to put up with it" speech, which really added fuel to the fire, because at the end of the day I didn't deserve to be treated with such flippancy and generally a lack of respect, remember Dr. Bodge-it and the whole “what makes you so special?” statement.
Now the "joints rocking" as we exchange social unpleasantries. He
actually had the indignation of trying to 'Rubbish' Dr. Functions diagnosis and tried to tell me that there was no further room for manoeuvre with my prescribed relief. The thing is he didn't even know what medications were being taken, due to his lack of preparation, ridiculous I know! He also stated that I "may as well come of them as they're of no real help or benefit." What?
A gifted doctor Im sure you'd agree, my whole life and that of my families had been turned upside down and inside out in a very short space of time and this was acceptable behaviour by probably a very good and experienced Dr., who in mine and Jo's opinion acted like a complete prat!
Relations didn't improve any either between the two of us after this
initial assessment.
"Stop the Press!!!!”
As I will relate further on into my ramblings, due to current
events with Hospital Queens Chronic Pain Team, I am currently in
the process of being referred to Hospital Kings 'Chronic Pain/
Psychotherapy Team" by my GP Dr. Rock. My good lady has just
informed me via a phone call, that after being in conversation with
my own GP, Dr. Rock, (he received confirmation from the Hospital
In question) that I was to be accepted into their care, only to find,
after much chasing via phone calls from Jo herself I might add and
absolutely no correspondence from Hospital King, that indeed they
had changed their minds on this and they would not be accepting
me into their care after all!
More on this unfolding scenario later!
Now every step of the way my GP, Dr. Rock, has been kept up to speed by myself, for obvious reasons of continuity and clarity, we have regular conference style phone call appointments every four to six weeks or so, of every event/situation. After one such appointment, informing him of this latest instalment involving Dr. Scarper, to say he was displeased with this particular consultant is putting it mildly. He vowed to take matters up on my behalf and converse with said consultant to voice his opinion.
Needless to say one straightened out consultant later and were back in the same room together talking business without a discourtesy in sight.
Now, the one thing that tends to stick out from my second visit to see my 'Pain Consultant', Dr. Scarper, and to be fair this was very evident from the first meeting with him, was his real lack of interest towards trying to find the right combination of medications to ease my suffering. In other words he had no intention of trying to change or find potentially the most appropriate combination of medication that could help me to subdue my pain levels. Odd I think you would possibly agree.
When I had my stay in Hospital Queen, further back into my ramblings now, my stay that allowed for my initial diagnosis by Dr. Function, I came into contact with the 'Acute Pain Team'. These are the equivalent of the 'Chronic Pain Team' but they are internal to the hospital, not external like the 'Chronic Pain Team'. The Acute Pain Team works solely on the Hospital wards, they do not deal with outpatients, thats the job of the Chronic Pain Team, remember I explained earlier the difference between the two.
This team of people were superb on the three occasions that I saw them. They listened to my story, they were supportive, and most importantly they tried to match me to the 'right drugs' that would ease my pain.
Interested people=Big difference, Im sure you'd agree.
Back to Dr. Scarper, the only form of help, in his view, that he could offer me was a series of injections into the problematic areas or area of the back. Cortisone plus other ingredients designed to
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| 'Rudy', our 'Red Tailed Albino Shark'! |
mask pain, not cure it, mask it!
According to Dr. Scarper for some people the procedure can be instant relief, for others no relief at all and for a small percentage of people there can be adverse effects. The adverse effects bit really bothered me, and still does to this day. Knowing the experiences that I had been through, the pain levels that I had battled, losing control of my pain, if only a little, due to a failed procedure is not even an option to me. I have to remain in control as much as possible, especially during my worst spells, to stand any chance of remaining sane. To have to experience my worst levels of pain for any extended period of time is not something I am prepared to let happen. I cannot afford to let it happen because I just do not think I would or could come through such an attack. According to this consultant the effects from a procedure of this kind can last anything from a few days to several years. Several years in the worst kind of pain I have ever experienced, I don't think so!
(Below is an excerpt from my personal diary!)
"Missed a day due to the "Train of Pain" hitting me full speed on
Saturday, thank Ranford (don't believe in god), for the medication I'm
currently on!
The pain when it hits just completely crushes me, I can't communicate,
move, it's just too painful, takes everything out of me to stop my pain from
overflowing!
Never experienced pain of this level, like I am at the moment routinely,
ever, bloody levels me, it really does!
At times like that, when "TOP" pays me a visit, things are put starkly into
perspective, makes me realise just how far I have to go, how many levels
there are to this current situation/disorder. Thing is I just don't know
what to do when it hits apart from 'hang on' the best that I can!
Jo yet again bought two elegant Mollies, the Dalmatian (Letipinna) and the stunning Silver Lyre-tail Sailfin (Velifera). Jo has rather a good eye for beauty and always chooses well."
As you have just read in my personal diary entry, Ornamental Fish have come into my life, thanks to Jo, and play a massive part in proceedings. I will be talking about my Fish and their importance to me a little later on in my account!
This particular consultant also discussed (and he seemed quite confident) that the problem is a Psychological one and not a physical One. He suggested that he send me to see his Psychotherapy Team for
evaluation. Just another consultant thinking that I'm faking the whole
situation. You see a bad rep follows you about!
 |
Meet 'Elvis', one of our
'Marbled Sailfin Mollies'! |
16. Of Fish and Purpose!
So yet another long period of waiting and being patient ensued, whilst in daily chronic pain, we haven't forgotten that bit have we.
Just a reminder, please keep at the back of your mind that in-between appointments the NHS basically abandon me and Jo, to deal with my condition on our own. There is no obvious solution and so they are in no rush to speed matters along despite my daily battle with my pain demons. During these prolonged times of patience through waiting, my daily life simply consisted of laying on my back legs elevated resting for much of the time, unless I was encouraging my body to re-train or looking after my aquariums (Jo bought me a small 40litre Aquarium for
.JPG) |
| 'Ernie', one of our 'Bristlenose Catfish'! |
our wedding anniversary, a complete genius is my Jo, inspirationally move by Jo really has been), what little I could do of course. My Aquariums offered me an opportunity to practice my movements, engage in a hobby and my Fish simply provided me with a sense of purpose. They depended on me for survival and I depended on them for a sense of drive/purpose, yes I was and still am limited in what I can do, Jo does ALL of the Donkey Work lifting heavy buckets, refilling, washing of Gravel etc. but nevertheless they are incredible important to me and my continuing progression. When you are isolated for 8 hours a day (Jo still went to work full time, incredible lady that Jo is, to keep the pennies rolling in), you become very lonely, very down and being in pain only heightens these feelings, I only ever journey out of the house to medical appointments (although recently I have as part of my improvement plan set by Physio Hope, started to journey out to other places and socially interact with people once a month. Mainly to the local Aquarium Shop because of my interest in the hobbyI may add but all the same a massive step). My Fish are simply part of the family and all have a name that's how important they have become to me, in fact to all of us!
17. Mind Games!
The NHS came back from their elongated dinner breaks and pulled their proverbial fingers out of their proverbial arses and arranged an appointment for me for the 23rd of November 2010, that's ten months in, eight weeks after initially seeing Dr. Scarper, a further eight long weeks of the worst kind of pain day in and day out. Needless to say the appointment date duly arrived and off we popped to see a Psychotherapist. She was a very young and very pregnant 'therapist'. She saw me initially and explained that she was due to be leaving on 'Maternity leave' very soon. Great! But she felt, after our initial appointment, that arranging for a colleague to see me in the interim
period to start treatment/evaluation was of the utmost importance. This was due to (in her opinion) my desperate need of help now and the seriousness of my situation.
On my next visit, two weeks later (now into December 2010) we were (myself and Jo) introduced to said colleague. A very nice elderly gent who happened to run his own practice away from Hospital Arrow, he obviously had the experience and ability to oversee the therapy department at Hospital Arrow. He, Therapist Delve, seemed to know his business very well indeed. We chatted; I filled in assessment forms, with Jo's help, and took tests, which took several appointments and included one disgraceful scene involving the Pain Teams receptionist. She quite obviously didn't give a damn about my plight and had to be verbally berated by Jo to organise a 'Gurney' (Mobile Bed) for me to lie down on, due to my being unable to sit etc.
My fourth appointment with Therapist Delve was to be, at least I hoped it would, the start of any proper therapy sessions but this was not the case. We are now into February 2011 one year in. Upon seeing Therapist Delve he promptly informed us that his funding from Hospital Arrow had been rescinded and that they, Hospital Arrow, had decided to make him redundant, and I would have to wait for my appointed Therapist to come back from 'Maternity leave'.
I feel that I must point out, if I have already not, that the NHS have
either a very sick sense of humour or just like to play God with their patients. Just imagine, if you would for one moment, that if for instance I happened to be chronically depressed (which I happen to be incidentally), and the whole reason for this Psychotherapy Treatment is to ensure that I don't become desperate, almost suicidal, (which I have been at my lowest point in the past). The one reason I avoided a serious incident was due to Jo placing my meds out of my reach, for fear of such an incident happening, because believe me when I tell you, me and the Devil almost became friends at one point, otherwise I was quite prepared to take my own life.
Now to be told "oh sorry Mr Gee but you'll simply have to put your
depressive state on hold several months until your Therapist returns! Nothing we can do sorry bye bye!"
Bang! The next day brings a potential blood bath at the Gee household. I feel that this sort of treatment by the NHS could be classed as borderline "involuntary manslaughter". I may be wrong, but I could be
dead too!
(Below is an excerpt from my personal diary!)
"Crap nights sleep again, lay there sweat rolling off me, felt dreadful,
because off Jo and her need for a good nights sleep, very difficult at the moment to get any consistency with sleeping patterns, and my problematic sleeping patterns are now affecting my wonderful lady.
Dosed up to hilt on morphine and feel very strange, almost jacked up so to speak, plugged in, strange very strange, all I know is that I needed to chill out and haven't been able to yet because of it.
Everything is a blur, quite badly today, seeing pain lights before my eyes possibly due to over doing it again with the aquariums, which is saying something considering I don't really do anything, stand to feed them, stand to trim the plants etc. nothing like a fully mobile person would. Thing is just opening me eyes can be quite a strain emotionally these days!"
With this being my last visit to see my soon to become redundant
Therapist Delve, we simply discussed his findings from his assessment of me and what the potential future may hold for me/us as a family. For instance, we discussed being conducive to developing/being taught skills to manage my pain, being realistic in any potential outcome and being open to other avenues of help outside of those we were already investigating. The main topic of conversation really were his findings, which to my pleasure turned out to be neither psychological or stress related but physical issues that could and have been accelerated through varying degrees of physical and emotional stress. These stressful increases had only led to a deterioration of my situation and
would continue to do so for the foreseeable future with any change
to my stress levels, for instance either side of calm, capable of
inflicting/raising my levels of pain.
18. Humble Pie! What Flavour?
The next medical excursion that I made, apart from visiting Physio Hope on a regular basis, was to re-visit my pain consultant, Dr. Scarper in the May of 2011, who during the time it took to arrange my next appointment had received Therapist Delves assessment and findings. He appeared strangely humble and less flippant during this next visit; he had been proven wrong after all, much to my delight. But he was still very much insistent that there was no more manoeuvring or combination of drugs I could try to help control my pain.
19. Human Pincushion!
In fact the only the option, in his view, left open to me was that of
directly injecting pain medication into the problematic areas of the
back to try and effectively shut the open Nerve Gateways sending pain signals to my brain, I mentioned this form of treatment earlier remember!
But here's the kicker, he didn't know which areas were the problematic ones. Just because I feel pain in the middle of the Lumber area of the back doesn't mean to say that is the source of the pain, its point of origin if you will. He effectively wanted to play Human Pincushion
making random injections into my back hoping to find the correct areas, thought it was a bad idea in the first place still do!
Now to most people I would suspect, this kind of procedure would have been jumped at straight away with very little thought given to the outcome. That would be understandable considering the pain they were in and dependent on how desperate that person happened to be to find relief, I can relate to that.
For me this decision was never going to be a straight forward one due to the potential outcome or problems that could arise, let me explain.
When you have been in chronic pain for as long as I have, by this time approximately 18 months or so, you may or may not start to assess options quite differently to most other people. Others might be in a similar situation but have spent less time actually in pain or with mobility issues. As I explained earlier my day mainly consisted of lying on my back with my feet elevated plus the little work I do with my Aquariums remember! In the earlier stages of my dis-order my mobility levels were non-existent to the point of being completely unable to get off my back without experiencing very severe pain, I crawled everywhere, everywhere being the toilet and bed. Jo would leave me a sandwich and flask of coffee at my bedside on the floor every day, the difference today is I can actually go to the fridge and retrieve my sandwich, maybe not make the sandwich Jo still does that part, but nevertheless its a progress step and of course I can make myself a hot drink on occasion (depending on my pain levels) through practising to
stand up.
For myself I have started to look at every option or treatment from
every possible angle to weigh up the pros and cons, which realistically anybody should do. But when in pain spending time weighing up an option is only prolonging the treatment. I'm not just talking about research on the Internet or talking to family and friends, which can be obviously very insightful, but the actual impact the treatment could have on me from all of the possibly outcomes good or bad, especially the bad. Its called Thinking outside the Box
The most important factor for me, which has taken me some months to fully recognise and develop, is that of control. All of the way through my disorder being able to exert control over my suffering, even to the tiniest degree, has been the difference between completely going off the rails and keeping my sanity. Control of my disorder is the key factor.
 |
This is 'Bullit', a 'Black Orchid Metallic
Crowntailed Siamese Fighting Fish! |
After Jo researched the treatment and all related information via the Internet, We then talked about the treatment and the potential outcomes extensively. I also sought advice from my closest friends, absorbing their opinions and thoughts. But while there was a potential for removing the ability to assert control over my pain I felt that (and still do) that this form of treatment is too risky. Strictly speaking it sounds more like a case of making injections into areas of my back until they find the most effective location. I really don't fancy becoming a human pin cushion. Whether my opinion will change over time I don't know. I suppose it all depends on how desperate for relief from my pain I become.
I also had a home visit from my GP, Dr. Rock, regarding the matter amongst other things, if you remember early I stated that I regularly kept him up to speed on all events, he totally understood my apprehension but couldn't believe how my thought process towards the matter was one of such careful consideration, as he stated most people would have just jumped at the chance regardless.
My GP was really quite disappointed in the lack of treatment offered and care that we really didn't receive from this particular 'Chronic Pain Team' so he decided, with my consent, to refer myself to a neighbouring Hospital, Hospital King, and their 'Chronic Pain Team'.
(Below is an excerpt from my personal diary!)
"I think the efforts of last week, car journey etc. and emotional stress
took its toll last night, my pain levels reached a9 out of 10 by mid-evening, needless to say last nights sleep was to say the least quite poor.
Feel completely bolloxed today, said to Jo this morning that I felt I could go and lie back on the bed and just flake out with my music probably all day, that's how bolloxed I feel!"
My first contact with this new pain team came in the form of a home visit several weeks later, by this time we are talking October 2011 and bearing in mind life collapsed for me on the 15th of February 2010, with the lead Consultant who came to assess me and my potential needs.
Brilliant meeting, one of the most understanding and considerate
medical people we had met thus far. Completely understood where I
came from regarding the need to be believed and my need for control,
he actually explained to me why I have these specific needs, which
was really quite refreshing to hear, as opposed to being berated or
ridiculed and completely misunderstood. A breath of fresh air you
might say.
The fact that this particular consultant also understood the parameters and ramifications of pain and the impact on the human psyche that pain brings, his obvious wealth of experience dealing with pain and people in pain was very much apparent during our discussion, on this initial chat alone we were very much encouraged that our situation could be possibly taking a turn for the better. He suggested that I see his Chronic Pain/Therapist Team and explained that he would be discussing my case with his department heads the following week.
20. Today 2012!
This really brings us to the present day, twenty six months later, two years and two months or if you like 792 days.
I had to wait five months to receive notification of acceptance from
my new 'Chronic Pain Team, I also received at the same time, an
appointment for March of this year (2012) for my initial assessment.
 |
| Tara Malc and Elaine, Jo's Sister, Pa and Ma! |
To be perfectly honest with you all, (those of you who have taken the time to read my ramblings of course), this whole situation has turned not only myself but that of my families lives upside down sensational, wonderful, which ever expletive you care to choose that illustrates greatness. Every day, day after day getting me physically out of bed and into the bath for a shower, where Jo will shower me down like you
would a household dog. Then out of the bath to be towel dried by Jo. Being at my side for every medical appointment, while managing to hold down a full time job, takes a special kind of person to be able to do both, inspirational in my opinion.
True friends have come to the foreground in our time of need, just
 |
Rachelle and Justin either side of
their three little Angels! |
being prepared to consider my predicament and work with me to still be able to visit and lend their support, my friend Justin and his family of four beautiful ladies especially.
A big plus in my oldest and dearest friend Kev getting back in touch after 15 years, who is now back at my side, not literally I might add he has a family and a wedding (to a lovely lady named Michelle, who just happens to make the most wonderful cakes) to plan, but close all the same, lending his support and encouragement as only Kev can.
Other people have shown their true colours and run away when support was required, mainly shallow two dimensional people who always take what is offered but never return with likewise gestures, which sadly only leads you to realise that they were not friends at all, just out to simply get what they can.
Jo's mum for being just that, mum, her love, compassion and support has helped us all, Jo's dad for parking the car on physio day and giving up his time to do it, and sister Tara, have just been outstanding in their support. Each in their own ways, especially Tara who has never doubted and was never in doubt of my very genuine situation, the first person other than myself or Jo to fully understand what the hell was going on and to show her genuine love and support without pause, helping out with anything and everything that she possible could.
You could never fully realise the full implications of deep long term pain and the effects it has on the body, mind and soul of an individual, but if you never have the opportunity to experience it, then you truly are a lucky person. To understand to some degree deep chronic pain at work, bring to mind your own personal worst pain experience and try to imagine living with that pain night and day for two years, and then imagine not being able to stand up, walk under your own steam or sit on your settee or favourite chair but only lie on your back on the floor, then you might have an idea. Try thinking it through if you have the courage too.
Most of all though this whole (still on-going) experience has taught me several things about life that you may know and yet not fully comprehend the implications of. Life IS far too short believe me, two years, and counting, of my life have simply just disappeared, cannot be recovered, taken from me, my career in tatters, just as my career was
starting to take a turn for the better, terribly sad, terribly disheartening. The most extreme of situations can happen to you,
really they can, never assume that they wont or cant, try not to
take life for granted, because we all do, and live it to the best of
your ability.
Friends can be fickle creatures but true friends are rare, hang on to
them no matter what and cherish them all, because they will come
through for you no matter what their own situations happen to be.
But most of all cherish your closest ally in life, the person you decide to share your life with, in my case my very own 'land living angel' Jo. Truly inspiring, loving and devoted, never in doubt that our love could and would persevere and keep us from falling, through thick and thin, together forever, together with our son Ryan my inspiration to keep battling (not to forget me Fish).
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| Ryan, Jo, Kev and his son Sam! |
21. Dr. Pain Free and Therapist In Control!
March 2012, my first appointment with Hospital Kings Chronic Pain Team, my initial assessment with Dr. Pain Free and Dr. In Control was, in my opinion and that of Jo's, a huge success.
As the Doctors first entered the examination room my apprehension and anxiety started to increase, but they needn't have because both Doctors turned out to be superb, let me explain.
Dr. Pain Free exuded confidence and intelligence and as the examination continued his obvious experience coupled with a very
easy but practical bedside manner came to the fore. He thoroughly
examined me during the examination as you might expect, especially the muscle groups in and around the problematic area. Dr. Pain Free suggested that there was now an obvious muscular problem to go with my already established symptoms. We discussed a possible medication change at some point in the near future (see there was room for manoeuvre with the medication Dr. Bodge-it), Dr. Pain Free also agreed with my reasoning for being dismissive towards being used as a human pincushion by Dr. Bodge it indicating that this approach would have been potentially the wrong approach to take.
Whilst Dr. Pain Free was doing his thing, Dr. In Control was simply studying, watching and listening to me, assessing me if you will in a very particular manner, one I'm sure that would allow the good Dr. to ascertain if any what my potential treatment could be applied from a physiological standpoint. My use of the English language was also of interested to Dr. In Control with several questions asked by the Dr.
regarding my particular vocabulary choice.
Overall a very positive, constructive and confidence boosting appointment, Dr. In Control decided there and then to see me on a one to one basis and arranged my first appointment with the receptionists. More on Dr. In Control after my first appointment scheduled for the 24th of April 2012, a mere three days time.
Finally, I would like to say thank you for reading, I really have only
touched on most of my experiences so far. I hope my experiences have been eye opening, informative and of some help to those of you with similar circumstances or experiences, I truly do. Please check back once in awhile, because I will continue to add to my story until its final chapter.
Thank you!
Matt.
From this point forward everything I write will obviously be up to date current events and conversations. I feel that I must point out the fact that my entries will not only be shorter, potentially, in length but of a more personal nature.
Therefore as much as I will endeavour to continue my story as accurately as possible, there will be certain aspects that I may feel need to remain just that, personal!
I will be allowing you all, who are reading my Blog of course, a look into my psyche, a look at what potentially is going on inside of my head and the things that make me tick/make me, like yourself's unique. This in my view is a very unique offering, one which I am prepared to do because of people like yourself who have read my account so far and in doing so have shown me a unique form of support!
22. Levity!
So, the 24th of April 2012 rolled around and I made my first trip to see Dr. In Control.
Lovely lady is Dr. In Control, not just in a first impression kind of way, but also in a sympathetic, understanding and most importantly a desire to help kind of way. A dark haired lady who radiates sincerity, warmth and a calmness when you are around her. These qualities have sadly been missing from within certain quarters of the medical fraternity I'm sure you'll agree.
This being our first coming together, was to be fair very much a feeling out, trying to get to know one another type of session, with, in my view at least, one difference.
The difference being we talked almost instinctively about pain, or to be more precise my pain. How had my pain affected me and my life, how had my pain developed and manifested itself along the journey so far, the sort of conversation that I believe you could only have with a person whom has come to understand pain, in its many guises and the compounding effect it can have on people, but more specifically a person who can understand from a pain sufferers point of view.
All the way through our session Dr. In Control intently studied my facial expressions, remarkable really considering we were talking in the darkness of a treatment room, and listened to my every word. The main part of the conversation centred around how my emotions affected my pain levels, the very fact that anything other than a calm emotional state can cause my levels to spike, happy or sad, both extremes, and every emotion in-between increase my pain, ramp it up so to speak. By the time my session had come to a close and a copy of this very document given to the good Dr., my feelings towards absolution were starting to be encouraged, and my trepidation towards receiving any kind of worth while psychological help was starting to wane.
Good positive first session then in my opinion, here at least one more medical professional who is genuinely concerned and determined to help me, I look forward to our next session, especially since Dr. In Control will have read this document and will hopefully have more understanding of my journey so far and the effects that this whole event has had on me and my family!
23. My personal DESPERATION!
My pain is just not regressing in the slightest, I can barely sleep and find myself up and out of bed, one almighty struggle with pain getting out of bed let me tell you, by no later than 4am in the morning. My pain just does not quit, does not take time off and has the ability, not unlike water in pipe work to exploit every hole, to find and exploit my every weakness. My pain just exploits my lower moods and sense isolation leaving me bare and quite raw at times, it crushes my resistance with regularity opening up my desperation to find respite in whatever form I can, unfortunately these episodes have started to lead me to thinking 'darker thoughts' again, the sort we're you hope one day you may never wake up.
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| 'Whiskers' one of our 'Cuckoo Catfish', lovely! |
You see being in chronic pain 24/7 I just cannot get comfortable at all, for any significant period of time, I'm talking minutes NOT hours, I find myself continually having to change position, swapping knees to kneel on, laying down, perching on the edge of our pine wood dining chairs, on and on, hour after hour, day after day it's more than one person should have to live with, period!
Pain engulfs you, covers you in multiply layers and each layer is a different level of pain to the others, believe me when I say that pain dictates life, dictates your every movement and how you live your life!
Needless to say when I mentioned the return of the 'Dark Side' to Dr. In Control the good Dr., instinctively asked Jo to control my drug regime again asserting tight control over my medication.
If only I could find some respite at times that would surely help but chronic pain doesn't factor respite into the equation, it just keeps gnawing at you physically and psychologically.
At least I now have the good Dr., to help me deal with all things psychologically!
24. Inside Out!
My second appointment has arrived to see Dr. In Control. Friday the 25th of May to be exact. Again our discussion took place in the softness of a dark treatment room, which really seems to suit the given situation. Now knowing that the good Dr., had read my 'Blog' I found myself to be quite surprised by the lack of reference to it from Dr. In Control, three topics that were put into play though were, the lack of belief in me from most quarters of the medical fraternity, or my need to be believed, my isolation, not just the 'being on my own through the day' but from the outside world in general, and the massive impact that isolation seems to be having on me, at least from Dr. In Controls perspective, which the good Dr., later elaborated on during our conversation.
The third point that Dr. In Control is concerned about is the more obvious point that of my control levels which influence the 'Dark Side' and more significantly my pain.
We once again talked about my pain and it's impact on me since my last visit, which had obviously led to my desperation for some form of respite and my darker moods. I asked the good Dr., one simply question!
"HOW, if this is to be my lot in life.......How will I be able to cope with chronic pain for the rest of my life, more specifically my brand of chronic pain, because I just do not know! I cope one day at a time at the moment but for the rest of my life, I simply do not know how or what to do, what do I do?"
I compared my current train of thought as to being inside a tunnel but with no light at the end, actually I then expanded and added that I don't even think I'm in a tunnel yet, a tunnel leading to recovery, because said tunnel eventually leads somewhere. My situation was more akin to being in a cave with no obvious signs of a way out just surrounded by a consuming blackness.
Dr. In Controls response was to reply, or try to assure me, that psychologically we will, together find a way to control my pain, but from a physical point of view Dr. In Control was certainly very unsure of what or how to progress.
My current state according to Dr. In Control is comparable to the emotional and psychological trauma of losing a son or daughter or spouse, the good Dr., really does believe this to be the case, take a pause and just try to put that level of emotional angst and distress into perspective..........................................frightening and life changing all in one instantaneous moment, the moment of realisation, the moment when you realise the full extent of what has just occurred. Perhaps you can appreciate the good Dr's., comparison to my own situation, yes it's been that emotionally, psychologically and physically distressing for me, Jo and Ryan, but most importantly me!
One subject that we did talk about in some length, which I bought up early into our discussion, was that of my own perceived personal shortcomings and poor choices or lack of good choices made by myself in my teen years.
For some months now I have been plagued by these type of memories, memories that repeatedly show me potential pivotal times in my life and the poor conclusions to many of these situations. Being scared of the unknown, frightened of rejection (with one young lady in particular) but mainly situations in my life that could have changed or allowed me to develop into a mentally tougher and stronger young man, even possibly mould me into a completely different type of person. a person with self confidence and self believe.
These type of random thoughts haunt me at the moment and only add to my pain.
As I mentioned earlier isolation also came into question during our discussion and how am I going to deal with it. Jo has to live her life, I encourage Jo at every possible opportunity to socialise, 'go out with the girls' interact with family more, meet new friends, anything and everything that allows Jo to live life, thing is this obviously only adds to my isolation overall so finding a coping mechanism is essential, something Dr. In Control will be able to help me with as time moves on, though and the good Dr., agrees, being a keen Aquarist is a very good start.
 |
This is 'Rocky', and he's big, real big
and will only get bigger! |
You see the fish, our fish, as silly as this may sound, apart from Jo and Ryan, give me a focus, a purpose in life a dependency if you will during the times when Jo and Ryan are absent from home.
They need me, the fish that is, to care for them, look after their environment and of course feed them, as much as I need the distraction, the coping mechanism, the hobby, something that is possible for me to a part off. They also, because of the height of the tanks encourage me to keep standing up to perform all of the tasks that need to be completed and practice my sitting while I watch their antics and the chaos that the create for one another.
Talking about our fish for one moment we currently find ourselves with approximately 80-100 babies in our smaller tank, with more on the way, looks like I'm doing something right!
My next visit will be more focused on my early teenage years and the relationship with my side of the family, this could be a very interesting appointment.
One great event that I was able to be apart of was with my very dear friends Justin and Rachel and their three beautiful daughters, Maddy, Belle and Lesty.
 |
Our 'Rocky' just loves 'Cucumber' and he always
eats it all up! |
We all, including Jo of course, went to visit my favourite fish shop and guess what, we had a great time together looking at all of the fish and the different species of fish, the colours mainly of the marine fish but even so all beautiful creatures, Justin, Rachel and the girls treated me to a fine selection of new fish for our new aquarium, we also bought a very special fish called a 'Royal Plecos', we called him 'Rocky'.
Most importantly for me though I was able to spend a longer spell in my wheelchair out and about with my special lady and great friends looking at fish. It was truly liberating for the time that it lasted, being part of society again, even if only for the briefest of moments. Priceless!
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| A GRAND day out! |
I cannot thank Justin, Rachel and the girls enough, not just for the fish but for being true friends, they have been supportive for so long and continue to be so, friends of this quality do not come along very often and I'm blessed to have friends like Justin and Rachel, believe me I am!
Until the next time!
------------------------------NEW Post Below 29/7/12-------------------------------
(Below is an excerpt from my personal diary!)
"Ya know someday's I don't know if Facebook is just
there, for me in my situation, to be a constant painful reminder of life and
how other people are living theirs. To see how well others are doing, while I'm
genuinely glad for them, it has a tendency to crush the life out of me and
bring home the lack of a future, one which has been quite callously ripped from
my hands.
No career, no social interaction even me closest friend
doesn't seem to be able to make time for me, and the general isolation are soul
destroying even to a person like me who is used to, before I met Jo,
being alone, shunned not really wanted about the place, never really fit in,
it's incredible hard all of the time. Glad I've got Jo and Ryan and I'm glad
I've got me fish to keep me occupied!
Being isolated and lonely is a killer, so is "no light
at the end of the tunnel and an uncertain future ahead of me"! Both suck,
big time!
I think, as I have been doing from the word go, will
encourage Jo to lead a healthy social life, especially where Tara's concerned
due to the network of friends Tara has and of course the bonding aspect between
sisters, also Karen comes into the same equation.
Just got to suck it up I suppose, be strong keep battling.
What really sticks in me craw though is people not answering text messages or
emails, takes seconds don't care how busy people are there
Is no excuse. If a person is snowed under possibly a couple
of days, no problem, but to simply ignore contact, don't get it? Must be
something I'm missing!"
Ya know, and I may have mentioned before or at least
hinted at, energy, the enormous amount of effort it takes not only me but all
of us to function. Think about this just for a second, when you wake up in the
morning for instance what's the first thing you tend to do, I would suggest
open your eyes, yes? Okay, stay with me on this, how many of you don't think
about opening your eyes, probably none of you, you just do it, it just happens right, automatic,
the signals are sent from the brain down the relevant nerves then your eyes
focus and away you go.
The amount of energy and effort the body has to expunge
to make this happen is more than you think, somedays just opening my eyes and
focusing over the course of the day, can completely exhausts me, just keeping
my eyes in focus can be draining of
energy and require considerable effort for me to sustain, then there's the
actual movement aspect of getting out of bed, think of all the complex commands
the body goes through to get you out of bed, which is something I cannot do yet
without help, i bet you just took it for granted didn't you.
 |
This is our 'Candy Strip Plecos' a
new member of our new Aquarium! |
I have to think about probably 70% of my movement before
I do it, just to prepare my mind, picture what I'm going to do and how this
particular movement may effect my pain levels, just swapping knees to kneel on
can be completely draining not to mention the numbness due to lack of
circulation to each foot and the extra pain that this can bring. I can
literally feel the energy drain from me for every movement I complete so
somedays within an hour of getting out of bed, with Jo's help don't forget to
get up, showered and dressed, I can be dosed up on Morphine or Diazapam or
both, back on the bed resting with my headphones on trying to block out the
pain from my exertions.
25. Straightening Out!
26Th of June 2012, 28 months in!
Physiotherapy with Physio 'Hope' rolls around. So off we jolly
well go, these appointments always make me anxious, though Physio 'Hope' has
been superb in his help and unwavering support, even so I never quite know what
to expect apart from the obligatory ramp
up the pain. This appointment has got to be one of the most intriguing and
genuinely very different visits that I have had.
Ya see with my problems mainly being neurological,
Physio 'Hope' has been treating me in a completely different manner which is
designed to retrain movement, thought process and improve fluidity of movement.
I think it's probably fair to say that a good percentage
of people have or know what 'Orthopaedic' Physiotherapy is and involves.
Manipulation of muscle mass, exercising of appendages etc etc.
This time though Physio 'Hope' went to work on me 'the
good old fashioned way' with his hands, oh bugger I hear you gasp!
Yes indeed oh bugger!
Physio 'Hope' had me lay on two rolled up towels, one
positioned each side of the spine between the spine and the shoulder blade.
This in turn, apart from being really very
uncomfortable, helped to force my shoulders back onto the bed therefore
stretching my pectoral muscles, ya see part of the bigger picture in all of
this is my slowly degrading posture and poor ergonomic application to tasks,
obviously through my condition I have had to find alternative ways to achieve
basic needs for instance getting to and from the bathroom at night, crawling on
all fours and having to leaver myself onto the toilet, sometimes but not all of
the time because Jo helps me out as I have stated in the past. Ergonomics in
regards to the body, just so you folks reading this are all clear on the
subject is the impact upon the body from performing a particular movement, whereas
posture is all about the way that you stand, sit, walk etc.
 |
Our two 'Long Finned Golden Rams',
beautiful, they glow an iridescent blue
with the lights out! |
So as you can imagine crawling on all fours, in
ergonomic terms has massive impact on the hands, wrists, knees and feet and of
course the back.
Now physio 'Hope' was incredible concerned with both of
these issues and his approach during this particular appointment was that of
encouragement, encouragement of the appropriate muscle groups to start
strengthening and performing in the correct manner. So by laying me on two
towels, initially took the pressure away from the pectoral muscles and put it
back onto the appropriate muscle groups that should be lending me the strength
to stand up straight as opposed to slouching over, a rounding of the shoulders
due to my back not being able to take the strain.
He also had me perform a series of exercise routines to
help strengthen these weakened core muscle groups, still laying on the towels
by the way, for instance with his help
bending my leg using my thigh muscles and not my calf muscles. He simply helped
me by lifting my leg, via my foot, while ensuring the knee, which is now bent,
didn't move and I simply resisted the movement during the travel downwards of
the foot.
Believe me after all of this time these exercises he put
me through were incredible hard work especially when your muscle groups are in
such a weakened state as mine are from spending all of that time on my back and
with very limited mobility.
(Below is an excerpt from my personal diary!)
"Two very
painful, difficult mornings have come and gone which just goes to remind me of
how unwell I actual am. There's the odd times during a day or even a couple of
days when I may feel okay, my okay is a completely type of okay for most people
and I need to start to remember that so I don't keep buggering me-self up, for a period of time but my pain and
discomfort soon come crashing back through to remind me who is really in
charge. Mr PAIN thats who.
It's like being on one of those retractable dog leads, my
pain gives me a little slack then 'click' and it reels me back in again.
Pleasant really is pleasant. Shit!
I know people so easily get the wrong impression they are so
easy to jump to conclusions its infuriating and aggravating all in one, really
pisses me off at times even Kev & Physio 'Hope', from time to time think he
gets carried away.
I think I get caught out sometimes by false appearances and
I think they are under the impression of tough love is the only way, good job I
know better, not quite sure with Physio 'Hope' sometimes though, but he's the
boss, to a degree anyway!
Fish tanks coming Friday hurrah! Will be plant hunting,
hopefully anyway, Saturday up at 'Bardills' with Jo. Think I can manage two
miles in the car this weekend.
Ryan did very well in his science exam too, very proud of
him, could be he becomes rather academic university and all that, how proud
would me and Jo be then!
Jo's feeling worn down and I think in need of this break
away from me in September I'm sure it will be very enjoyable for Jo, at least I
really hope so anyway and I get to spend sometime with a new friend 'Jenny' who
will be looking after me!"
Despair tends to pick it's moments very randomly but with
equal poignancy. I'm writing this entry strangely enough during such an
occurrence, one where pain, exhaustion and finality have finally come together
again, "what do ya mean?" we'll let me try to explain.
At no particular times throughout my journey so far have
I felt despair and anguish in equal measure with any kind of warning, not so much as a "how do you
do!"
At times the weight and enormity of the journey so far,
and I might add the journey to come, when you look back over the everything we
have been through i think you would agree that there has been a lot to deal
with, simply put, becomes to much to comprehend, to deal with, it just
completely washes over me and sweeps me under. The fact that seeing where we as
a family and myself as an individual were and could be further down the line
just opens me up to this darkest of emotions.
Not knowing IF there will be an end to my pain, an end
to weakness, physical, emotional and psychological, or wether I will just lose
the drive to keep pushing myself on is soul destroying, plain and simple.
I keep exerting myself forever testing new ground if you
like, I took another couple of steps on crutches this past weekend, thats eight
so far, but ultimately afterwards I pay
the highest price for my endeavours and exertions with days of heightened
chronic pain, physically and emotionally.
Just not being able to sleep a full single nights sleep,
deep and refreshing, i would have to reach stage four of the sleep pattern
(physical recovery) to achieve that, not being able to sit comfortable on our
setae, not being able to sit at all realistically. All of these and many more
situations add to despair, people do not know how lucky they are, they really
do not!
Everything in my life is based around pain, day and
night, sometimes finding the will to keep battling with this most difficult of
task masters can be quite draining!
I find myself becoming more and more fed up with this
crappy situation on a daily basis. When most people wake in the morning I'm
guessing that the first thought through their head is;
"bloody hell another crappy day at work!" or
"I'm really ready for this day off/holiday I deserve it!"
I'm not saying everybody has these thoughts but probably
a large percentage, me when I become aware, because sleeping is just such a
joke, it's probably one of the worst parts of the day for me, allowing my body
to relax and the drugs in my system to start to weaken, the first thought
through my mind is;
"how much F%#+*€G PAIN AM I IN today!"
Swap ya! Any takers?????? No! Shit!
26. Riding the slip road to my mind!
So my next appointment rolled around with Dr. 'In
Control', off we go in the pouring rain to Hospital 'King'.
The journey from the car to the hospital entrance once
we had arrived resulted in my and me Ma getting wet but you know when you
haven't felt the rain on your face for quite sometime, as your know by now two
and half years and counting, really was quite liberating let me tell you.
Okay, so this particular visit with my favourite
therapist again in my opinion went in the right direction I truly believe, with
several new topics of conversation coming to the fore. A pattern seems to be
emerging with my visits were the good Dr. Checks on my personal state of mind,
where my head space is at. This left me with confessing my pain had, as is
generally the case, been front and centre most everyday since my last visit.
 |
'The Nuge', Ryan Nugent Hopkins
of the Edmonton Oilers! |
Realistically pain controls my every action, dictates my
day, day after day some more severe than others granted, but nevertheless pain
absorbs me.
During this visit with Dr. 'In Control' I happened to be
explaining some of the distractions I use to help me combat my pain, one such
being the downloading of my favourite 'Podcasts'. Now the 'Podcast' is a
marvellous thing in my opinion because it allows access to your favourite
sectors of entertainment around the world, which in my case means everything
'Edmonton Oilers' of the 'National ice Hockey League' out of North America.
The broadcasted radio program's made by the organisation
in question readily allow access normally denied, due to lack of interest in
this country in the sport of Ice Hockey, which means to an avid follower, like
myself, all of the latest gossip, interviews and opinions from the people that
matter.
Listening to my selection of 'Podcasts' everyday really
make a massive difference to my constantly evolving routine, by distracting my
mind away from my thoughts of pain, and more towards my beloved 'Oilers' and
the upcoming season and all of the gossip and scoops associated with a
multibillion dollar hockey franchise.
I happened to show the good Dr., my 'Miracle Pill
Video', which you can see for yourself further down the page, which, probably
like yourself s raised a few chuckles from the good Dr. When the video finished
Dr. 'In Control' sat starting at the screen of my iPod for several seconds
afterwards lost in deep thought, the good Dr., when satisfied with the train of
thought and it's conclusion turned to me and told me that one thing the video
had revealed was one of anger, borderline rage, brewing, festering within me possibly
looking for release, to which I openly admitted to could have possibly been
brewing since right back during my years spent at school. The more that I think
about this particular emotion the more I agree with the good Dr's., assessment,
I am slowly coming around to the idea of suppressed anger, rage if you will,
being with me for many years, through school and to the present day. The sheer
volume of 'turn the other cheek' experiences that have presented themselves or
simply being 'the fat kid' at school and the trials that this brings, which can
be quite traumatic, especially at school.
I'd say that there is strong case for anger contained,
waiting to explode within me.
Sometimes, NO! actually a large percentage of the time,
I would happily settle for life in a wheelchair IF they, being the medical
profession, would release me from the grips of my pain. Notice how I said
"would", because I do believe that there must be a pain killer or
some form of nerve pain treatment,remedy, suppressant that could do this
available on the open market.
After all this is the 21st century!
We talked about anger and it's potential to influence my
pain for quite sometime during this appointment, with the good Dr., suggesting
that my current pain might be acting as a magnifying glass highlighting my
frustrations, past failures and poor choices and so fuelling my emotional and
psychological pain.
Also apparent to Dr. 'In Control' was obvious self
loathing and shame, not having the courage and confidence to believe in myself
and move forward through life, point in case, my lack of involvement with the
opposite sex, especially at school and my teen years.
In other words the first girl that I
met and asked out, I married.
That would be Jo then, I was aged 22!
Several opportunities presented theirselves throughout
this period of my life but I simply lacked the courage and confidence to stand
up and take the opportunities and make them happen, and I truly believe that, especially where the lasses are concerned, I would have been moulded into a completely different person.
I think there is plenty for myself and the good Dr., to
discuss which hopefully will produce answers and untangle my complexities.
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