Thursday, 30 August 2012

Memory Problems

Memory problems have continued to plague my train of thought.  At the start of recovery it appeared that it was a simple case of losing the majority of the past decade with the decade prior to that one being something a little more than hazy, but it is now apparent that this is not just a simple case of amnesia,  it is more than that as it affects my day to day living in much of what I do.

1 cup Kettle (couldn't be simpler)
Early warning signs came in just doing the simple things such as making a cup of tea.  For most people this is a long established routine that they can carry out without second thoughts, almost a sub-conscious series of steps, but for myself I had to break this down into each step and even then there was no guarantee of a successful outcome.  People have different taste and therefore each cup would need different mixes of milk and sugar, but before I got to that stage I would need to consciously think about how much water was in the kettle, whether there was enough water in the filter to refill the kettle, how much to add, all the typical things I had one before without a second thought.  Still things would not go as they should, one of the most common things for me was to finish adding milk to those required, reach up and open the cupboard above me and have the milk half way there before realising that the milk was not going to go into the the crockery unit but the fridge several metres to my right.  Most people would note the first experience and not repeat this kind of mistake again but for me it happened time and time again.  There was also getting the number of cups needed correct, having made not only one less than required but even one more, the number that required sugar, actually putting tea bags into cups, and a host of other things that could go wrong, not just once but time and time again.  We reached a stage where we bought an kettle that would boil one cup of water at a time, and still I managed to boil a cup of water twice without changing the cup underneath.

These problems are not just confined to drinks in as much as I have managed to make errors in the simple task of using the laundry machine, often putting powder in the fabric softener tray, and even to the extent of forgetting to select the machine programme or in several cases returning to the machine some time later to find I have not turned the power on in the first place.  The amount of bread I have cremated when making toast is now beyond a joke, just smile and don't let it get me down, fortunately I haven't burnt the house to the ground yet, although I have ruined dinner. It is now three years into recovery and things are falling into place, which basically means I still get it wrong on numerous occasions.  Right now I am struggling to remember what I wanted to say, this is possible going to be the shortest incomprehensible blog I write.

Much of the advice available to tackle this is about taking notes, not unlike a 'to do' list.  There are several reasons that this fails to satisfy my needs particularly well.  When I am given something to remember a part of my brain is telling me that the information is short or it is a simple item to remember therefore I do not need to make a note, the problem here is that I can and have at times forgotten what was said within seconds, other items such as making the tea would become quite laborious if I followed a list of instructions from notes so as to take an inordinate amount of time to complete the task.  Taking notes then in itself is fine for people with full faculties of mind but for a person with Acquired Brain Injury or damage it is not always the answer, as I have tried to explain on several occasions I have to remember to make the notes in the first place. 

Distractions are a major source of problems for many things that I try to do.  Following a recipe, for instance, should be straight forward but if I am engaged in conversation and I need to get the information across accurately then the 'Overload' on my brain almost inevitable means something will go wrong.  Even this morning while talking bicycle set up I almost missed adding water to a bread mix.  Many people will have trouble comprehending how it can be so easy to make basic errors on simple things like this, but for me this is an everyday part of life I have to deal with.

Yes, I have a white board in the hallway with important numbers and dates, where it can readily be seen every morning if I remember to look!  Yes, I have a desk pad by the PC and phone to scribble notes but if I'm concentrating on what is being said in a telephone conversation or reading a web page I'm concentrating on it doesn't always happen.  I have two note books to hand, one for special use and one for general needs but the notes I need to make do not always end up in them!

 As I once tweeted- whiteboard in hall, desk pad next to PC, notebook to hand, still forget note to self!

Wednesday, 25 July 2012

Never ending headache

The problem with Encephalitis is that there is not one problem.  Unlike many others the body is as intact as it was before the illness, it is the brain that has been affected.  Many disabilities will cause physical problems but leaves the person with full faculties of mind, Encephalitic infections destroys the cells that make up neurons and other bits robbing one of the ability to process incoming data properly, and this goes across as many senses and memories as the destruction reaches.  The intensity seems to have no rhyme or reason to it that I have been able to fathom out, often seeming to do it's own thing, but I suspect it may have to do with the amount of mental reasoning or processing my brain is trying to complete.  I have read that there is a question as to whether the headaches experienced by survivors is related to Encephalitis, and to be honest I don't know about that, what I do know is that since I came back from the drugged state I have never been free from the pain.  While it is permanent I am grateful that it varies in intensity.  This means I am not in a permanent position of holding my head while bed-bound.

One of the first Challenges I faced was trying to communicate what level of discomfort I am in at any given time with members of the medical profession.  It is customary for doctors or nurses to try and get an idea by asking the patient to indicate based on a number usually out of ten.  This works for most people who still have the ability to think on a normal level but doesn't work for me.  I found myself struggling with what seemed like a vast range of 1 through to 10  in which to try and plot my headache, in fact it almost defeated the object as knowing they were waiting on a reply and trying to pin a number down was causing more stress and increasing the intensity.  I had to find a way to communicate this without causing problems.  As I could see things I was trying to deal with too large a number while under time pressure, so back to basic arithmetic.  It took a little while for me to put things into an easier way for my brain to cope with these figures.  The solution I found was to consider the level of intensity I could identify quickly with obvious markers.  This left me with just five numbers to deal with initially, and then to just double the number to give the answer within a reasonable time span that would be acceptable, and has stood me in good stead ever since.

The basic levels of identifiable pain are as follows:
On a level from 1 to 5, where 0 is free from and 5 is highest-

1= background level, not generally noticeable until I stop thinking.
2= Hi, I'm your headache and I'm still here.
3= OK, your not going to ignore me, I'm going to interfere with your working drastically.
4= Ha! that's it, now you can't do anything but sit there dumbly.
5= back to bed, close eyes, go off world.
At any time I was experiencing a level of pain that would not fit into one or the other category I would just add a half before doubling the figure for a final answer to give.

Painkillers, pills, tablets, Bit of an unknown there.  Many years ago I would have just taken a tablet or two and within 20-40 minutes the headache would have been forgotten and you Just get on with the day job for 4-8 hours until the tablets wore off.  Since Encephalitis I have found this not to be the case.  Despite taking medication it seems as though it would just hold the pain at the level it is at, although not guaranteed.  It is almost as if they no longer have an effect on pain reduction, and I was getting through quite a few pills.  When I related this, the neurologist was quite concerned at the number I was taking and from that I have almost stopped self medicating.  This seems to have made no difference to the level of pain intensity I feel, but I still take some when it reaches level 5, probably for some comfort, almost like a placebo effect. 

Now I have slowed down, no longer doing things at a speed or reasoning to a level I'm sure I was capable of achieving before Encephalitis.  It seems to have helped, there are not so many that stop me from doing things or sending back to bed at least once a week.   I am not free of headaches by any means, they are always there, in the background just waiting for me to get a little overly confident so it can bend me down again.

Thursday, 14 June 2012

Labyrinthine Minds

I am not a neurologist or psychologist or any kind of brain specialist.  I have not done any real research for this article lest I come across better than I am.  This is just trying to explain things to myself, in my own way, while allowing others to observe what creaking cogs are going round in my mind.  So if anyone is looking for definitive answers for their homework you have probably come to the wrong place.  If, on the other hand, you need to fill a dissertation with random ramblings help yourself, just do the right thing where credit is due.

The standard given for memory is a three tier model.  The first layer is an instantaneous there and gone, lasts for less than a second, unless needed for short term holding. The second is a short term memory, to deal with an immediate item, which can last for a second to a few minutes, but I am not aware of a time on this.  The third layer is long term memory, this is the one that lasts for years if not life.  The first layer takes in everything we sense, sight, sound, touch, hear, taste.  As it does this it discards what we do not need.  The second layer, short term takes selected pieces of information that mean something of  use in our lives until that moment has passed, should that be sometime in the future it will transfer the information to the long term memory for recall later.  Since I have come back from an Acquired Brain Injury (ABI), namely Encephalitis, I see things in a slightly different way to before.  When we talk of memory I get the impression we are really talking of recall.  This then presents to me an alternative picture of what I thought I knew.  

The Labyrinthine library from the film 'The name of the rose.
The alternative then is that we take in absolutely everything we experience through all our senses.  This can sound impossible but for however much we know of outer space our knowledge of inner space is quite limited.  It is a combination of what I have found as much as what I haven't that leads me to consider an entirely different picture.  The brain is acting like a three dimensional library, not the acceptable man-made building, but a labyrinthine type.  There is no neat corner of the construction that is dedicated to a stairwell, with each staircase going from floor to floor, this is more Escher-esq, or the film 'The name of the rose, floors on differing levels and stairs going all over the place. As we take in or experiences each individual piece of information, touch, taste, smell, feel sound is put on an individual card (or piece of paper).  These are then sent around this labyrinth for storage, not in a timeline, but under some unknown retrieval system, no GPS, no maps.  The more important the information, the more often we need to use it then the easier the route back to retrieve the carded info is, like doing a regular journey.  The less travelled route becomes harder to retrace as we struggle to recognise pieces on the way, and sometimes, if we do a route only once for recall we may never remember again.  yet there are times when we seek to recall something we did many years ago, we may make it, we may get lost, it all depends on whether we can find the route back.

Then one day there is a catastrophe, a fire, a collapse, a bomb, who knows but the building is damaged.  No longer can the familiar routes be relied upon. Some staircases have gone, some floors are unobtainable.  As we search for information stored within we find some right where it always was, other bits require that we take different routes around the damage to try access what we are looking for.  In taking or travelling these alternative routes I find older cards from years ago, things I had long since not required but trigger a recognition.  Sometimes I find the odd card but not the complete picture, other times several cards from different pictures are lying next to each other but you know they do not go together, it's a false memory, a confabulation.  There are two cases that tend to defeat me, I can no longer access that area of the library where the information I am certain is stored and the new information seems to fall through the destruction on its way to storage.

It is all so frustrating, especially when I try to explain to people why I cannot recall some-things I was told two minutes ago, yet can be seen talking and living a memory from three or four decades ago.

Friday, 4 May 2012

Dreams, Nightmares & Hallucinations

I am not a trained doctor, or specialist in the field, for me then things are quite straight forward and simple.  Dreams are something everyone haves.  We have several dreams each night but the one we usually remember is the last one, as we come out of deep sleep ready to wake up.  Nightmares are just bad dreams that the brain responds to by waking us up to alleviate the stress it's going through.  Hallucinations is an altered state of reality that occurs, like a dream, but continues despite waking up.  During my first week(ish) under the influence of Encephalitis I had several although I can only remember the latter two of my own accord now.  My daughter reminded me of another and my family talk of one of which I have no recollection at all.  I will relate three here but it is probably the final one, the hallucination, that may be of most interest to the branch of psychology and students when I consider how common the subject matter is to many people I have read.  While the body and brain are heavily under the influence of drugs, such as Acyclovir, and in my case fighting an infection, Encephalitis, that distorts the brains control message at the same time.

The dream was relatively quite simple in that I did not have to do much in terms of thinking.  I didn't feel as if I was asleep.  I was just lying in a hospital bed, drifting, when I became aware of the hole in the mattress beneath me.  It reached from just below my shoulders to approximately half way down my buttocks, but I couldn't feel the sides.  I knew I was going to fall through this hole and crash onto the floor unless I remained still.  I did not have to persistently stretch my body in aching rigidness so long as I did not relax.  The prospect of hitting the floor and ensuing pain, and difficult position I would end up in kept my attention on remaining in position until I woke up.  It took a while for me to realise that even if there was a hole in the mattress to fall though that the frame of a hospital bed was a mass of bars for raising different sections and  I would not have been able to fall. Strange then that it felt all too real as if I was conscious.

The night mare was something quite different.  There was no panic to start with as I more or less understood what was happening.  It was not until the last part that my brain cried enough and woke me.  It started with a scene not unlike the geology of S.E.Asia.  I was on a steep sided ridge, one of many, disappearing into the horizon, all parallel to each other.  The sky was a deep, but not dark, red.  The ridges themselves were the colour of matt purple which, strangely enough, mating pleasantly with the sky.  The ridge line was fairly wide as I was walking along yet pairs and groups of others had room to pass me with space to spare.  These others were grey silhouettes, not flat as I recall seeing some detail of the folds in their clothing.  They were talking and joking amongst themselves as they made their way along to the end.  As we walked along the ridge towards the end slope I was aware of somebody on my right, I couldn't see them nor hear them speak, but understood what they were telling me.  

He, for everyone in this was male, told me that what was happening was fine.  Everyone was going willingly and looking forward to it, as was demonstrated in their movement, chatter and laughter.  I, for some reason, was reluctant to follow their lead, this was not something I wanted, not that I knew either way.  As my reluctance increased and my pace slowed more so my unseen companion tried more encouragement, he didn't shout or use profanity yet was quite an insistent fellow.  As I looked towards the people descending the end of the slope I could see some getting further down than others before their transformation occurred.  As they descended they would transform into blue striped Budgerigars and instantly fly up as black silhouettes, wings beating almost in a blur, many tens of them, as more went down the slope.  As I stood still, before I reached the end, my companion was no longer there.  As I stared out my attention was caught by one bird that, within seconds, flew in front of my face and stared directly into my eyes.  It was that close that I could not take in it's entire head in my vision yet remained in perfect focus.  As I stared back into it's right eye, for each is mounted on the side, I could see it questioning my reluctance while at the same time I could see the human within.  Eye contact was not a fleeting glance but held for some time, as it beat it's wings to maintain position  This was not a human shape but human intelligence.  it was at this time my brain said stop and I woke.

It would be all to easy to say this was the night of my big battle, I don't know, but then I cannot say it wasn't.  I am not sure what to make of this, if dreams are to read, just the mind going through distortions from drugs and infection.  All I can relate is that if this is to be, then there is no great shining tunnel of light for me, perhaps reincarnation then but as a Budgerigar, not exactly big wing then. *groan*  Oh how they all laughed and found it amusing that people changed into Budgerigars as I related this soon afterwards.

The hallucination was not the same kind of horror until I thought of the consequences had it lasted much longer.  Yes, I was in hospital, but this was more of a medical establishment.  The ward was layout had altered slightly.  The main corridor was directly opposite my room door and so was the exit corridor to the left, but now the ward was a rectangle, of four corridors with single rooms of each outer side.  The centre was a large walled area of facilities with the nurses station halfway down the main corridor.  The nurses station was recessed into the centre section for while I could see the edge of the desk you could never see anything else.  The walls were no longer emulsion painted plaster beloved of hospitals but large sections of some easy to clean/sterilise plastic.

This medical facility was a testing unit.  I hadn't seen the other patients, only doctors and nurses, but we were all guinea pigs.  we were there to be used to trial biological warfare antidotes.  each week we would be infected and then given an antidote.  As things progressed, or not, we would be moved from room to room around the ward until we got back to where we started ready for the next weeks trial, if we survived, if the antidotes proved successful.  As my wife gave me some biscuits I turned to the left to put them on the bed table next to my cup. I stopped.  I had done exactly the same thing last week, and the week before and before that.  This fact struck me like walking into plate glass door, the fact that I hadn't been there a week did not.  Remaining as calm as possible I deliberately placed the biscuits to the furthest side of my cup, requiring me to stretch a little beyond comfort, this I would definitely remember next week confirming my suspicions.

So strong was this alternate reality I would have to make my plans for escape.  I knew I would be hampered by the drip; it would have to go, be left behind.  I was aware that people have ripped drips and things from their arms, but I was going to have to be subtle, Dripping blood from flaps of skin and feeling pain was going to fog my brain.  I could extract the tubes from the cannulas and remove the needles later.  It would have to be done in the quiet hours to minimise the risk of discovery, there would only be one nurse at the station, and I would have to walk at as normal as I could, running would only bring attention.  When I got to my door I needed to turn left and pray no one was coming along that corridor, stairs would probable be better than risking the lift.  my house is just across the road from this place but that would be the first place they came looking.  Could I hide in the bedroom, the loft without being discovered or should I go elsewhere but where,  people may realise who or what I am, report me and my recapture would be imminent. Should I seek the inclusion of my wife, No, for she may inform the staff believing it to be in my best interest and they would stop me before I get going, or she may accidently give them clues as to what I knew and was planning.  This I would have to do on my own.  I continued to review and refine things over the next 24 hours until all thoughts of this left my mind and I re-entered reality.

I have read of many incidence where patients have torn drips and things from their bodies before, and then managed to run through windows, off balcony's or hospital roofs,  indeed, I had a good work colleague and friend who managed to do this some years before, and no doubt there will be cases to come.  The real issue with this is that it is not really an alternative reality for the patient, it IS reality, this is what is happening in real time and you have to do something to escape the situation. Whether this recount helps psychologists or students I don't know but that's there for you to consider.

I still have thoughts of the nightmare and hallucination cross my mind fairly often, not every week but they must have been imprinted on my mind in a substantial way.  I do not think I will ever leave them behind, they may fade in time but every so often something seemingly unconnected triggers one or the other again but at least I recognise them for what they are, even if I don't understand them.

Saturday, 31 March 2012

Back again

Patient Monitor
I became aware of someone standing next to my head, not sure if it was the rustle of clothes or the faint aroma of body warmth.  I was feeling snug, that warm, comforting feeling that you don't really want to disturb.  As I started to open my eyes I heard a female voice express one of those clichés, something along the lines of "Glad to see your back with us".  There was some conversation going on around me as I came too, I don't recall forcing myself awake, just let it happen at it's own pace.  I became aware that it was Friday, not that I was in the least concerned at that point in time.  There were several other things that I became aware of, like it had been a close run battle and Monitoring had been reduced in time scale to 15 minute intervals, not that I can recall if they were spoken directly to me. There was also the matter of the hospital conversing with a disease unit in Cambridge, who in turn spoke to somewhere in America who would suggest the next blood test to be done, no wonder they took so much.  The ward doctor came and asked a series of questions that I tried to answer as best I could but can not recall what, all I was interested in was one of my own.  "I hear it was close, how close?" I asked, to my disappointment I did not get an answer, more of a knowing look as he went into further questions.  I was not aware then, and would not find out for many months after that I had been unconscious for about 48 hours.

I was fairly well plumbed in, nasal tube to stomach, urethral tube to bladder, cannula to veins.  Apparently after a short while I didn't need oxygen.  Indeed it appears the virus had completely bypassed my lungs.  This left the medical team in something of a quandary as the virus was not following it usual method of attacking the body, causing them to phone pathology on several occasions to confirm the diagnosis, and raising something of a laugh with my family by asking what type of sport I did. Me, a sportsman! made me smile when I heard that one. 

Nasogastric tube
There were some pills and one of those 'fizzy' drinks to be had because I was still constipated, there was also the matter of an injection.  This was because I was still bed-bound.  Nurse Sue gave me a choice, thigh or stomach, thigh seemed complicated what with moving bedsheets and PJ's, and I was aware stomach injections could be painful.  What I wasn't aware of was my brain couldn't follow rational thought through to a decision, I just replied along the lines of wherever is easiest.  Nurse Sue looked at me and asked again, more pointedly and I said stomach, not as a decisive choice but because it was an answer.    The injection was nowhere near as painful as I was expecting, indeed I hardly felt a thing, but at that time I was still being pumped full of drugs.  The next thing to deal with was removal of the nasal tube which, anticipating that gagging feeling as it came up the throat, was done with relative ease.  The tea trolley arrived, and I could not think of anything more welcome in my life at that moment, I just had to make sure the tea was not over milked.  The arrival of the tea trolley would become the most anticipated highlight of my stay as the days seeming rolled into one long on and off consciousness, with a few moments that I could not pin down to any day.

One day I was eating a meal when the nurse entered the room, looking over to greet them I was scolded.  "You promised me you would take that tablet", Taken aback I looked to the bed table to see a tablet quietly resting there.  I had no idea how or when it had got there, I had thoughts of it being sneaked in to mess with my head, but couldn't tell how it came to be, so I apologised and promised to take it when I finished eating.  Then it struck me that was what I was supposed to have done before and decided to take it there and then.  This was not the only incident that seemed odd but I struggled to give it more than a shallow thought, but there was more humiliating moments to come.

Having been unhooked from the urethral tube I had to use the disposable bottles, however the quantities needed recording.  I duly filled the first one and went in search of the sluice room.  I was intercepted by a nurse who took me there and showed me the register.  On the wall was a list of weights for each receptacle, all I had to do was find the gross weight and work out the net contents. It was only a matter of so many hundreds grams minus some less, struggle as I did I couldn't do it.  I turned to the nurse and said I would need to write it out, from somewhere a pen and paper appeared, and I proceeded.  I still couldn't do this.  I checked again, large figure on top, small below, but still it eluded me.  This was not maths, I could do maths, I helped my children do their homework.  This was subtraction, basic arithmetic, and yet I stared numbly at the figures on the paper.  As a consequence, after that, I just labelled any further containers with the bed and room number and a note to be weighed & recorded.  Yet I still had not put things together as to what had happened to me and what the future might hold.

I could have wept!
Feeling thirsty I approached the duty nurse and asked for the kitchen, she pointed and asked me why,and I said I really wanted another tea. I knew they were busy and not wanting to distract them I could just get my own.  I was told, firmly, that I could not do this but if I wanted one all I had to do was ask. I had played the tea trolley game for so long It never occurred to me in all the time I had been there that I could have just asked.  I gladly accepted but felt like weeping at this revelation.

On another occasion a doctor on rounds, with two students in tow, asked me if I knew what the day/date was.  I gave it some thought and answered, quite honestly that I didn't. "Try!" she replied firmly, and almost like old machinery cranking into life I started to try work things back, then realised something was wrong, I had missed some days and had to recalculate it all again.  I reached a position where I had narrowed down to a Wednesday or Thursday, and twenty something or other, not wanting to look any-more slower than I felt I just took a guess at which day and date.  I was never told if I was right or wrong, they just nodded and disappeared.

There were some other incidents but I can not recall, I'm just aware more events happened before I was discharged, it was not until later that I would really start to find out what I could and could no longer do.  In some respects it was like being an alien, observing while the world went on around me, all the time waiting for the next tea trolley because by then I had forgotten about being told to just go and ask.

Sunday, 26 February 2012

A clear, cool, colourless liquid.

As I walked across the road to the hospital entrance it was now 7 days since the first symptoms had shown themselves and who knows how long since the infection first took hold.  Unusually for me I had not just done as the GP said but had insisted on greater help.  I wasn't shuffling but my pace had slowed from it's normal speed.  There was the normal groups of people in and around the doors and foyer but I didn't take in their details, I was just trying to carve a course around and through the slow but ever moving obstacles that they presented.  I followed the basic instruction the GP had given me to find the Acute Assessment Unit, which was basic and fairly straight forward, until I found the door.  This was not an Intensive Care unit but another area with side wards, away from A+E, in which certain medical conditions would have restricted access.

Pushing through the swing doors I saw a large desk on the right, it looked big, like an old police station counter.  I retrieved the letter from my pocket and approached the lady standing behind the desk.  I identified myself and she confirmed that they were expecting me and indicating that I need to go further along the ward to another desk.  I looked down the corridor and my mind registered another desk that seemed a long way off, nodding in understanding I gently pushed away from the desk like an oarsman launching from a mooring and made my way forward.  At the second desk they acknowledged me, took my letter and told me to sit on the end bed, indicating the eight bed side ward behind me.  The ward was empty of patients but I taking this at it's basic meaning I made my way to the far bed in the room and just sat on the edge facing the window, not really taking anything in.

A young doctor appeared and started to question me and I related the tail of the first symptoms and the headache.  He said something and I waited as he disappeared back up the ward to re appear a few minutes later with a senior.  Again we went through the questions and symptoms, and again they both left but this time I overheard a part sentence.  No one had made any mention of Swine Flu until I had told them, not in the phone calls or the letter.  They returned after a few minutes wearing protective facial masks.  And at that point I recognised the junior doctor, it was 'Lewis Hamilton in a face mask'.  Whether I was stunned by this revelation or, more likely my brain succumbing to the infection, I wasn't really taking in the detail of what was being said but just the general message.  They were going to have to perform some tests, requiring Lumber punctures.

Lumbar spinal kit
I was laying on the bed, the top half of my torso naked, with no recollection of undressing or laying down on my side.  'Lewis' began wiping my back with an extremely cold wet liquid.  I recall asking if it was the orange stuff one see's on medical programs, he corrected the colour and told me it's name.  A few minutes later the senior came round the bed to face me, and got me to adopt a semi foetal position as aesthetic was injected.  Something was happening behind me as the senior told 'lewis' not to worry as the Lignocaine takes a little time to work.  I felt the senior place his hand at the base of my skull and neck with a gentle but firm pressure, his other hand reached into the crook of my knees.  And then it started. I felt something touch my back which, in my mind, rapidly turned into a ¼ inch square steel pastry cutter being forced through the skin and spine.  It hurt, it hurt like hell, but the over-riding thought going through my mind was "don't move, don't move!".  There was a brief discussion between the two doctors and then knowing they had to do it again.  I felt the hands behind my head and knees again and then the pastry cutter was inserted in a new position.  Again and again and again, each time needing a fresh location in the spine, until they seemed satisfied.  Yet without me knowing, they had failed to achieve their aim, they had not got the fluid, or sufficient quantities, that they needed.

I was shown into a side room, an individual room, to avoid cross contaminating other patients on the wards. I was to placed in the hands of the Critical Care Unit.  I have no idea how I got there but people were fussing around getting things into place.  My awareness was now following a pattern, at that time I was not aware of this but with hindsight it disturbing how fast things were beginning to deteriorate, I was sinking ever deeper into the abyss, yet entering a domain of compliant acceptance for the needs of staff to treat me.  Sometimes my brain would have 5 minutes of clarity, but that could have been a delusion.  There were a few questions from a nurse, and I was given a hospital gown to dress in, and climbed into the bed.   A doctor, whom I would get to know later, introduced himself and started another round of questions. I only recall the one from a whole series of questions.  He asked when my bowels had last moved, I tried to think, then recalled being constipated but when was that.  I wanted to tell him all but found myself shaking my head and saying softly "no".

My wife got permission to leave work shortly after the news reached her, in fact over the next few days all the family visited although I am only aware of a few visits, and then not all that was discussed.  Arrangements were made to buy some PJ's and other sundry goods after work and get them to me that evening.  The next thing I was aware of was a slight bump as the trolley bed passed through a door.

Spinal tap fluid.
In my mind it was Tuesday, but this. according to everyone, happened the same Monday afternoon.  I had an awareness of a very sterile room, one that was longer than it's width by far, like a galley kitchen would be.  Although I was on my side I was aware of three people in the room.  A senior anaesthetist and what sounded like a young male and female.  An alarm bell, shrill yet flat sounding, rang for a short time.  This must have brought my mind back closer to events.  I could hear the senior tell them to wait, to make sure it wasn't a real alarm, while I just waited in the calm.  I heard the young girl asked what would happen if it were real alarm, the senior told them the patients would be put to sleep before evacuating the building.  I recognised the policy, it was the same for an aeromed flight, when a crash was imminent. There would be no time to help the stretcher cases so they would be put out of their misery first.  I wanted to say "I know, it was OK, I understood, but you just get out and I would make my own way out", but I couldn't so I just lay quietly.  When they were certain things were normal they continued.  There were more lumbar punctures to be done.  I felt very little pain as I started to drift again while I felt, yet again, hands behind my head and knees.  They were guided through their work, I could hear talk of the liquid in the syringe, and after two attempts they seemed satisfied.

Back in my room I was being informed by senior nurse in a dark blue uniform, whom later I was to know as 'nurse Sue' that they would need to insert a catheter.  I have had this done before so told them to go ahead surprisingly I felt little discomfort, unaware my kidneys were failing to function properly.  I was also put onto an IV drip containing Acyclovir.  Whether someone had figured out what was happening to me or whether it was just precautionary I will never know, it was to become the one chance to save my life, but I was to come to hate the sound of the word 'Cannula' by the second week.  Numerous times people came in disturbing my peace to check my vital signs,  but by now I was beyond caring, and anyone entering the room had to wear a face mask.  By the evening I was in my new PJ's, and trying to rest when I felt nauseas.  I grabbed the disposable bowl and duly vomited.  I pulled the cord and asked the nurse for a replacement.  By the third bowl I was offered an injection to help but all I could think of was a glass of cool water.  My mistake, this went on and on till I was into double figure bowls, there seemed to be no stopping this, I finally accepted the offer of an injection and sunk back into the bed exhausted.  A while later I was woken to have a tube pushed up the nasal passage and down into the stomach.  I held the gag reflex until told and they managed this little game first time, and as I lay back I started on series of nightmares and hallucinations that were to shake my world. 

As I opened my eyes I became aware of a scroll in some masonry, it was a soft red stone and finally knew what I was looking at, it was part of the old façade of the hospital.  After some time the doctors broke my peace and asked another series of questions which I did my best to answer, seemingly satisfied they left.  I drifted off again.  Several times the staff had phoned the pathology department to confirm the diagnosis because my lungs were completely clear, and always the answer came back an affirmative for swine flu, the anti-bodies were present in the spinal fluid.  It had targeted my brain almost as if by intelligence. 

I could hear a sound, or rather numerous sounds with a slight echo, it was voices.  The slight rocking of my body suggested I was on another trolley moving through a public area.  I couldn't distinguish individual words, it was like a cage full of muted chickens.  I wondered what they were talking about,  Were they talking about me, were they judging me, what were they thinking as I was being swept past them, and despite the sheet and bed throw beloved of hospitals I felt a naked vulnerability seep through me.  I was parked next to a window in what sounded like a cathedral of a room.  Footsteps moved away till I could hear quiet voices talking.  The window appeared large, and arched at the top befitting a huge room. Other sounds now came, vehicles and footsteps outside the window, I could hear them talking and thought they need only turn their heads to see me and that cold feeling of naked vulnerability seeped through me again.  In the room was a machine. My mind viewed it as a monolithic piece of engineering that would have taken pride of place in any heavy industrial workshop.  I was to have an scan of some sort.  Moving me into position I was told to lie as still as possible as a steel mask, with two slits for eyes, gave a dull metallic clang as it shut over my face.  Then the noises started, banging and thumping in strange rhythmic pulses, until I was no longer aware.

Each day my wife would visit two or three times, and each day although we talked I was to have no recollection of them.  My wife would be briefed before or after as to my progress or not.  Until one night the care staff informed her that if I was to continue on the downward path I would not be taken to the intensive care unit,as they could do no more than the critical care staff were already doing where I was, she was to go home and get some rest but be ready to be called back in that night.  Totally unknown to me I was about to enter battle.  

On one side was a virus, under the flag of H1N1 breeding it's battle troops at an exponential rate, already inside the compound damaging and destroying my communication systems, wreaking havoc with the command centre that was my brain.  On the other side was I, backed up by a small plastic bag containing a clear, cool, colourless liquid called Acyclovir.  This was to be a decisive battle, there could only be one outcome, one winner.  This was, for both sides, a battle for life or death.  

Tuesday, 7 February 2012

A few lines on the page

I don't know what day it was, or what the date was nor for that matter which season, just that it was 2009.  The scant marking and squiggles in my diary that had once meant everything I needed to know about what I was to do or had done are now something of an enigma.  As I tried to decipher them into meaningful stuff all I can figure was that over the period I was delivering lectures to groups about roadcraft and road safety during the working week and off at the weekends.

I have this strong feeling it would have been a Saturday morning, with the light streaming through the window, that I was scanning the news on my laptop.  The homepage on my browser is set to a web news service to keep things straight forward. The normal course was to scan the front page and check for the most likely looking article, click the headline link and read the first one or two paragraphs.  If it was something of interest I would continue to the end, if not then I would look at the other links on that page and click or just return to the homepage and start again. 

This particular day I followed the links and found myself looking at news from the South American section.  I'm not sure how I got to that point or how many links I had clicked to reach that report.  There was just a few lines on the page, three or four, which basically said that two people had died and several were in critical condition, in a village no one had heard of in Mexico.  The local authorities were gathering a specialist team together to investigate a potential outbreak of swine flu.

There was no silent alarm bells, no tingling spider sense, I am not aware of reading the page twice, just staring at it.  It's was as if my sub-conscious brain took over as it extracted information I had learnt before.  I knew the so called 'Spanish Flu' pandemic of 1918 was, in fact, a swine flu but had it's name changed as the government of the day was concerned about the impact on the pig farming industry.  There had been expeditions to Svalbard islands as well as Alaska to exhume victims for viral genetic research.  That the pandemic had wiped out more then 30 million people and the scientific community still didn't have the answers. The recent Avian flu's from South East Asia had travelled around the globe at a rapid speed with modern transport systems reaching the UK in short order even though few people succumbed.

As the days went on, and life continued as normal, another death and several people were hospitalised.  News of the teams arrival, investigation and confirmation of findings were noted.  The thing I didn't notice at first was with each day it was getting easier to find the piece, less and less links.  It was climbing up in the news league table.  The mass media got hold of this item and it went mainstream just before the first case was confirmed in North America.  As the weeks turned into months more cases, more deaths and finally it crossed the Atlantic to arrive in Britain.  By now it was headline news big time, each bulletin started with the recent updates on this.

Life for most people carried on as usual, there was no mass panic, no hysteria, but people wanted answers.  The news studios invited government ministers, health experts, and anyone else and his dog to come onto their programs and reassure the public that all was in hand and stocks of medicine were being made available.  The two clear messages in all of this was that if you suspected you had the infection you were not to go to your GP or to the local hospital, for fear of spreading the infection, but to phone the health service help line who would go through your symptoms and issue the tablets if confirmed.  The second was quite simple- wash your hands thoroughly and wash them often, I even managed to secure an A5 poster to help the children.  Ironic then, it was to be me. 

 As more victims were announced a new phrase came into being.  It seemed that all those dying from swine flu had done so because of 'underlying causes'.  As time moved on there was other incidents, people being flown abroad for treatment, an outbreak at a school in South London, but for the most part people that actually caught swine flu didn't realise it because the symptoms were so mild they hardly noticed a slightly sore throat or minor headache.

Volvo B9R Coach
On a Monday, my brain insists, in the middle of October I was not lecturing but rostered to take a coach cross country, Bedford to Oxford and back then later Cambridge and back. This was a journey I had done many times in the past and was looking to it as a refresher from my normal duties.  The coach I was to take was due into the Station about 3 o'clock for hand over and I would take it on what should be just short a 4¼ hour round trip, just inside the legal limits, traffic permitting, never easy at that time of day.

The first sign anything was wrong was a feeling of butterfly's in the stomach, not lots just one, a huge one.  I could just feel the right hand wing gently brushing up and down every two or three seconds with a slight hesitation at the top and bottom.  I put this down to a nothing, grabbed a beaker of cool water and waited for the coach.  One hour into the journey and I noticed the headache, I tried to ignore this thinking I could take some tablets during the 5 minute turn round at Oxford.  I scrabbled round my bag at Oxford but can't recall finding any medication, the headache was stronger now but figured I could get some painkillers at Bedford depot.  I got caught in the evening peak traffic and by the time I got back to Bedford I was late, too late to take the next coach allocated and would have to wait for the one after mine.  As I sat in the rest room my headache was intensifying and interfering with my thoughts, my temperature climbing rapidly. I was struggling to make rational decisions until I thought 'enough, go sick now!'.  I was much later to find out from colleagues that I looked to be in a right state.

I arrived home after a 20 minute walk, to the surprise of the family, who were not expecting me much before midnight.  A cup of tea, as they fussed around me, my temperature had climbed quite high.  I went to bed with some tablets.

Tuesday was not to bad, the head still hurt but not as bad. I felt lethargic, tired, but had not coughed. I managed to get up but not much else.
Wednesday was something else.  The headache was intense, right round the head with a small extension between the right eye and ear. It didn't pound in the usual way with the pulse but just was.  I managed to get some more tablets and went straight back to bed.  As I lay there I became aware of the phrase 'to smack one's head off the wall', never had I thought of doing this before but for some reason I could feel it quite strongly.  While the new pain may be a distraction I knew that in reality it would not help.  I placed my left hand on the pillow, rested my head in the palm and placed my right hand over my head as if to lock it in place.  There I lay waiting for exhaustion to carry me away.  I didn't wake until my daughter Jacqueline woke me with a cup of tea.  I knew I had to get up or I'd probably not sleep that night.  I don't remember if I got dressed or just slung a dressing gown on before joining the family.
Thursday didn't seem too bad.  We got through to the help line and issued with a personal serial number to get Tamiflu.  The allotted chemist was across town and my wife duly trudged over only to find our number and the chemists number didn't match.  Fortunately the chemist was able to resolve the issue and I got my first dose that night.
Friday was similar in that I managed to get up and around the house, the headache was present but not impossible to live with.  It also brought about the first day I noticed the constipation.
Saturday and Sunday passed but I can not remember any details of those days.

Monday, and the headache was back, I managed to get an appointment with my then GP, and arranged for someone to take me.  I related my tale and he seemed to look at me in a 'what do you want me to do about it' way.  He may not have been but that's the impression I got.  I repeated my tale of the headache, leaving work and the rest, this time with emphasis and finished by saying "I need Help!".  He sent me back to the waiting room while he made enquiries, twice I was sent back and forward till he gave me a envelope.  I was to go to Bedford hospital but not the A&E, I was to report to the Acute Assessment Unit, the meaning of which did not register on me.  he gave me instructions on how to find the AAU and off I went.  I was driven home and had a quick cup of tea to quench my thirst, and walked the short distance over the road to the hospital. 
Bedford Hospital, Main entrance

It was about 11 o'clock in the morning.  As I entered the main doors no one, least of all me, had any Idea how fortuitous that timing had become, my odds were shortening rapidly, the numbers falling away like the back of a parabolic arc.