Information! What Information?

There I was sitting at home heading toward my 52^nd birthday and now a Stroke Survivor.

The really strange thing was that I really had no idea of what the hell that meant.

Studies suggest that somewhere around 120,000 people have their first Stroke each year in the United Kingdom with a further 30,000 having a second one. Of these 1:5 (30,000) will be fatal. In other words one every four and a half minutes. In the area of England where I live there are 1,000 strokes a year.

On a very rough and hugely unscientific survey, carried out by me amongst those fellow survivors I know personally it seems that most of these Strokes leave the Survivor with a range of deficiencies not so different to my own. I know a woman, in the village, who lives in the old peoples housing and must be in her late seventies or early eighties who had a stroke three weeks ago and is up and a bout. Unsteadily and with the aid of a stick but up and about. A more scientific study (produced by the Stroke Association) indicates that the average length of hospital stay post stroke in the UK was 20 days in 2010 which would allow for very many to stay for only a few days or less.

All this, unfortunately, adds up to a Stroke being a large part of what the National Health Service has to deal with. That being the case you would expect there to be a well oiled machine ready and waiting to burst into life.

Well, I got nothing! I found myself at home after two days in hospital with a bag of meds knowing next to nothing.

After leaving A&E not a single Consultant, Doctor, Nurse, Therapist or any other Medical Professional spent so much as a second explaining anything. There were many opportunities but they were all by passed. The Consultants were only interested in getting a diagnosis. The two more junior doctors I was put in the care of disappeared without trace. The nursing staff were only interested in taking my sats and getting drugs into me. The only people amongst the hospital staff were the cleaners and those bringing the food, who were all very nice and chatty but of no use when it came to Strokes.

The only information I gleaned about Strokes while in hospital was from a noticeboard on which was pinned a copy of some colour leaflets. Even without my history in marketing and having printed thousands of similar pieces of paper it was obvious that they were printed and meant to be part of a folder. I have not seen them again.

One of the things I craved after my Stroke was information and yet there was nothing coming from the very people and organisations I thought would not only be most helpful but would want to provide it.

I was discharged from hospital having been diagnosed as having had a Stroke with a bag of meds, the advice to get my Blood Pressure down, not to go to my GP, to and keep it at 145/90 and a copy of my “Immediate Discharge Letter”.

The letter, which was also supposed to go to my GP,  was full of long words and implications that it was my fault. There was no explanation of what had been found. As it turned out some of what it said was plain wrong or at least missed important information, but more of that in further posts.

There was no conversation about how I was to achieve the stated Blood Pressure target. Nor was there any discussion around any of the other risk factors: alcohol; diet; weight; exercise; stress. 

I was given no information regarding support services; either Health Service based or those provided by the Third Sector. I had no idea that such a thing as a Community Stroke Associate Practitioner even existed.

I was left with the internet as my only source of information and as we all know that is a coat of many colours. Some good and some bad! However I didn’t feel like surfing the world wide web at the time.

I have talked to almost thirty Stroke Survivors and they all agree that the information they received was diabolical to say the least. In this day and age that is nothing short of disgusting. There is no reason why a simple pack cannot be handed to every person who suffers a Stroke. But before that there should be a human being who is able to spend a few minutes explaining what has happened and what the Survivor might find happen into the future.

I have been told time and again that the deficiencies I had immediately after my Stroke was all there would be. Technically that might well may well be right but that is not what it feels like. After your Stroke you are not going to feel very well and as a result you are going to be resting and not using your body as you did beforehand. As you feel better you begin to use your body more and you come across other things you either can’t do or are having difficulty with. What the medics don’t realise is that every time it feels as if you are finding NEW deficiencies.

There should have been somebody telling me all these things: the good and the bad!

Having talked to a number of Stroke Survivors I know that what they really wanted was information. Without facts people tend to fill the space with whatever information they can which generally means that the space is not filled at all. What actually happens is that the black hole of non-information gets bigger and bigger.

All of which is utter rubbish!

All the information is out there and it is a disgrace that there is not a simple and well established routine that gives Stroke Survivors and their Carers everything they need to know.

One way round this impasse is for Stroke Survivors to be a part of the clinical team.

What do you think?

Deficiencies

“You are lucky to be walking and talking …”

With these never to be forgotten words my Consultant broke the news to me that I had suffered a large Stroke but had got away with it.

OK! I was lucky!

At the time that was not the feeling that came to mind, but more of that in a later post.

While I did not have the range of deficiencies that I could have ended up with, I certainly did not escape scot free. 

As I described in my first post “Attack” my stroke happened after a Burn’s Night Supper. My partner and I walked home with the couple who live over the road from us. I was later to find out that the man told his wive that he thought that there was something “a bit odd” about me that night. Apparently I shook his hand a number of times on the less than a quarter of a mile which was not something we were in the habit of doing. And certainly strange enough for him to comment on it when they got home.

The overwhelming feeling I had was of being “unwell” “under the weather” “not quite right”. I don’t have any other way of describing it. There was nothing I could really put a finger on but I did not feel great. To begin with I put this down to the after affects of having a tot or two at the village Burns Night Super.

I assume it started during the night but judging by my behaviour on the walk home it may not have. Regardless, I had gone to bed at around one thirty, after having a dram or two more but just could not settle. In the end I felt that I had to move into the step-daughter’s bedroom, she being away doing a ski season, so as not to disturb my partner. All day Sunday I felt tired and not quite right. But as I really didn’t do anything I missed most of the deficiencies. I felt some numbness in my right hand but as I had been feeling what I put down to the beginnings of arthritis in my hands for months I thought nothing more of it.

On the Monday I got up at seven to walk the dog. My right leg felt heavy, as if I’d had a couple of pounds added to it and I seemed to be “dragging” it, well maybe not dragging, more not being able to bring my ankle all the way through to complete to stride. I also felt cold: more so than the conditions warranted. I worked as normal but when I got back, at around eight, I was utterly exhausted. So much so I went virtually straight to bed, not that it did me much good as I barely got a wink of sleep.

Tuesday seemed just another day until I got home. The partner was working away. So as had been normal prior to the stroke I settled down into the evening to write. My right hand felt enlarged to such a degree that my fingers felt too small for the keyboard.

I was getting almost no sleep: regardless of the time I retired. I found myself awake during the early hours, sometimes as early as 3 or 4 am. Not only was I awake I could not get comfortable in bed.

Wednesday was very similar to Tuesday. I walked the dog, worked and got home around seven and after getting something to eat I went to bed, with the same results as every other evening so far. The thing that was different about Wednesday was that it was the first day that I remember having a headache since Saturday. For reasons that I will go into in a future post I am no stranger to headaches but this was different in many ways to the ones that I was used to. This headache was in a different place in the head.

Thursday followed exactly the same pattern as the other days of the week so far. I felt cold and my right side did not feel right. I have covered the rest of Thursday in earlier posts so wont go into it any further here.

So having had a stroke what deficiencies was I left with?

My right side felt odd.
Generally it was difficult to pin down to anything specific.

My right had felt enlarged or puffed up.
This was not a consistent thing but when it happened it made using my right hand strange.

My right leg felt heavy and felt as if its movement was restricted.
This meant that when I walked I “dragged” my foot every so often.

I felt tired.
So tired that I could sleep at the drop of a hat.

I was not sleeping.
I was tired but when I did go to bed I was finding sleep difficult to come by and when I did find it, it was so often short lived and fitful.

I was getting headaches.
These could last from half an hour to most of the day. The other thing about these headaches was that no regular painkiller would touch them.

My right side felt cold.
There were times when if I was not fully wrapped up, including gloves, I could not even cover the two or three yards to the car without a feeling a real pain in my hand.

I was left with a two sided body.
I know every body is two sided but I am left with a right side that reacts totally differently to my left. If my left was warm my rift was cold. My right had tingles, my left didn’t.

I was slurring some of my words.
My slurring happened more often when I was tired but not exclusively.

I was having trouble finding the correct word.
I knew what word I was looking for but often struggled to both find and then express the word. It is true that the words I had the most trouble with were the longer or less used one but again not exclusively.

The right side of my mouth had dropped a bit.
This was not obvious but did begin to show when I was tired. It often only became apparent when I felt a thin line of dribble trickle out of the corner

My stroke has left me with a number of deficiencies that, whilst not as bad as they might have been, and while not affecting me every day they were still capable of having a significant influence on my life. My job now is to get used to the new me.

Notes to carers about our injured brains

Every Stroke Survivor is the victim of a brain injury and as such there seems to me to be a number of things that it would be helpful for carers, family and those we come into close contact with tried to understand. I have compiled a list, after talking the subject through with a range of Survivors from those who have lived with the after effects for almost thirty years to a later generation who like myself are less than a year into this journey of discovery.

I think of the brain as a smart phone. And as such it has a finite capacity. This is the case even without the effects of a stroke. Just like a phone our brains capacity is split between a range of jobs. Parts of the brain's capacity is used to monitor and control / regulate the automated activity of the body; other bits of the capacity are used to run functions in the brain itself; further capacity is used for walking, talking, eating, etc. When one has a stroke the brain's capacity is reduced, not only that but a new function has been added. The brain has to find ways round the dead spots, which takes a share of a limited capacity. This being the case our brains make choices over how they are going to use their limited capacity. This choosing may result in us feeling a lack of energy so reducing the movement and level of activity or not remembering things or looking to avoid complex situations. There is one thing I would ask all those close to us to remember, that we have absolutely no control over the choice that the brain makes. None at all!

The list is by no means exhaustive and is in no particular order but I hope it gives a good starting point and even generator of questions.

We may need a lot more rest than we used to.

We get tired as well as a fatigued. Our brain finds it both difficult and tiring to think, process, and organise the wealth of stimuli that it is expected to on a daily basis. When the brain gets tired it tells the body to rest and thus reduce the flow of stimuli.

Even though we look fine our stamina can fluctuate.

Cognition is a fragile function. Some days are better than others. Pushing too hard can lead to setbacks.

Rehabilitation from a brain injury takes a very long time, sometimes years.

We may have been discharged from formal treatment, if indeed we received any, but rehabilitation continues long afterward. Please bare with us.

We are not being difficult when we resist social situations.

Crowds, confusion, and loud sounds quickly overload our brains, we cannot filter things as well as we used to. Limiting our exposure is a coping strategy, not a behavioural problem and certainly not meant to upset anyone.

When you ask what we have done that day we are not being difficult when we say "I don't remember" of "Nothing.".

We really want to tell you but we really do not remember. A day is a long time and at any stage of it our brain may have said that enough is enough and as a result will have failed to store the memories or our brain is tired and is having difficulty accessing the memories. It is sometime easier to say either that we don't remember or even don't know rather than "my brain hurts".

If more than one person is talking we may phase out.

This is because we sometimes have trouble following different “lines” of discussion. It can be exhausting trying to piece many conversations together. We are not deliberately being dumb or rude; our brains are being overloaded!

When we are talking we may appear to drift away or even switch off.

It is not because we are avoiding the subject; we need time to process the information and even “take a break” from thinking. Later we may be able to or even want to rejoin the conversation and hopefully be much more present for both the subject and for you.

Try to notice when our behaviour changes.

Our behaviour can be an indication of our inability to cope with a specific situation and not a mental health issue. We may be frustrated, in pain, overtired or trying to deal with too much confusion or noise for our brain.

Patience is the best gift you can give us.

The space your patience allows us gives us time to work deliberately and at our own pace; which in turn allows our brain to rebuild it’s pathways. Pushing and multi-tasking may inhibit that and cause us discomfort, frustration and even pain.

We will almost certainly stumble over words and thoughts.

Please try not to interrupt. Allow us the time to find the words we are looking for and complete our thoughts.

No matter how frustrating it is please have patience with our poor memory.

We need you to know that not remembering names, tasks or any other detail of daily life does not mean that we don’t care. It is just that our brains are using the capacity it would normally use for storing and organising memories for other things. It could also be that the part of our brain that is affected by the stroke, and is in fact dead, may be an area connected with memory.

Please try not to be condescending.

We are not stupid - well no more than we were before. Our brain is injured and does not work as well as it used to. The doctors are sure that our intellect has not been affected, its just that our brains don't work the way they used to.

We may sometimes appear “rigid”.

Our brains are rewiring and the need to do tasks the same way all the time is part of that. As is having order and a place for everything in our lives. It is like learning the route of a journey before even attempting the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy and not aimed to irritate.

We may seem “stuck”.

Sometimes our brains take time processing information. Coaching or suggesting other options may feel like it's helping but it’s almost certainly not. Taking over and doing things for us is not constructive; it stops our brains finding the route and will probably make us feel inadequate.

We know you mean well, but.

Unfortunately at the moment we work best on our own, one step at a time and at our own pace.

We will occasionally need to repeat actions; sometimes many many times.

If we repeatedly check that doors are locked or that the oven is turned off it is not because we have OCD but that we are having trouble storing the information.

We may seem sensitive, sometimes overly so, or even insensitive.

We know that we may appear an emotional lability since the stroke. But we prefer to think of it as a reflection of the extraordinary effort it takes to do things now. Tasks that used to be done on automatic and take minimal effort, now take much longer, require the implementation of numerous strategies and can often be a major accomplishments for us.

We need cheerleaders now.

In many ways we are learning life a new, just like teenagers and in some cases like toddlers. It may not be what you want from us but it's all we have just now. It will help us if you can find your a way to encouraging our efforts. Please don’t be negative or critical: we are doing our best.

Support our Hope.

We need hope. It helps us employ the many coping mechanisms, accommodations and strategies we need to navigate our new lives. Every single thing in our lives can seem extraordinarily difficult for us now. It would be easy for us to give up. We would ask you to take the fact that we don't and get up every day as a sign of our determination.

Background noise is a menace.

We would love to have our own quiet room; just as teenagers want there their own space. With significant background noise we can become overly stimulated which means we could become tired, frustrated, fatigued or even irritable and probably all of them.

Time for ourselves.

The fact that we seem to want to spend more time than usual on our own does not mean that we don’t want you in our lives and that we don’t appreciate the support and love that you give us. It just means that we need the time for us. Time where we can restrict the stimuli to our brain and hopefully as a result create the space it needs to re-establish the pathways it so wants to.

Finally, it is really important that you understand that we do not know when any of the above will appear. So, if it is days or weeks between episodes that's just the way that it is. It is also probable that we have not been telling you of all our headaches and other deficiencies which may mean that a lapse in memory appears out of the blue. You have to believe that we are not making anything up or indeed exaggerating the effects.

Arriving Home

Now a Stroke Survivor I was on the way home having spent a little over forty hours in hospital.

Friends from the village picked me at about 6:30 pm. The journey home was a strange affair: I kept being asked how I was feeling and to be honest I had no idea. On a basic level I was still able to walk and talk so could be described as OK. But on the other hand everything had changed and somehow I felt anything but! The friends asked if Kate was home. I had no idea. I knew she was picking up the step-daughter but as to whether or not they had arrived home? Pulling up outside our house the answer became clear.

Thanking our friends I entered the darkness of the kitchen to be greeted by the dog, Bruce. Normally I turn off unnecessary lights but this time I wanted lights and heating on. Even though I had not eaten all day I was not hungry, but definitely in need of a shower. Feeling refreshed I settled down, with Bruce, to await my family’s return, which happened at a little after 21:00 having stopped to pick up a Chinese Take-away which the step-daughter had been “dreaming of” while in the Alps. After hugs all round, questions about how I was feeling and turning down a plate of Chinese I headed for bed at about 21:30.

The next morning, 1^st February, was the one when Andy Murray lost to Novak Djokovic in the Australian Open final. We woke early to watch the match, but to be fair I had hardly slept. Within minutes Kate had the bag of meds and the Apple laptop out, wanting to investigate each drug and define how and when I should be taking them. All I wanted was to quietly watch the tennis and see what the day brought. She being the sort of person who needs things sorted, and I’m sure worried and confused, it did not go down well when I suggested that there would be plenty of time to do the meds thing later. She could not leave it, even after the appearance of the step-daughter, so in the end I went to watch the game in the extension. Within moments I had first the step-daughter and then both of them standing over me telling me I was being unfair, they were worried and so I should just do as I was told. We eventually did watch the game but with a tension you could almost touch. Once Murray had lost, Katw and I headed into the County Town, to buy a blood pressure monitor which I used for the first time at 3 o’clock (207/121) and again at 18:00 (204/111) when I also took my meds, setting a pattern that continues to this day.

On Monday, I rose at about 8:00 am, having been awake since five. The partner and step-daughter were talking in her room with the door open. I called out “Good morning” but got not a peep in reply. I took my blood pressure (183/111) before my partner appeared in the kitchen. I could not stop myself asking her why they had ignored me. She tried telling me that they had not seen me. At that moment the step-daughter entered and when I said, “Good morning” again she got herself a drink and headed back upstairs without a word. I asked my partner what was going on and was told that neither of them knew what to say. I was stunned! When I pointed out that, “Good morning” or even “How are you?” would have been a good start all I got in response was anger.  Again I was shocked. Surely they had discussed the stroke, and what to do and say, during the journey from the airport. But apparently not! I was completely floored and pointed out that if they were having difficulties what did they think it was like for me.

After the mess of the morning we agreed that lunch in town was in order. I was ready first and waited, not particularly patiently. When they eventually appeared their foul moods were obvious. Leaving the house I realised I had forgotten my gloves and went back for them but when I got to the car the two women where in the middle of a full blown slanging match. There was no way I was going to engage with that so went for a walk round the village. Twenty minutes later a crying step-daughter came to find me and we spent ten minutes talking, during which she admitted to finding it hard and having no idea what to say. My response was that whatever she was feeling I had the same doubts, worries and questions, if not more, and that the only way through this was to talk and take care of each other, all of us. We eventually made it into town and had a pleasant lunch. I took my BP when we arrived home at about three (207/118) and again at around six (186/112) with my meds and finally at ten o’clock (198/117) just before going to bed.

On the 3^rd, I woke at 4 am but finally got up just before six, setting a precedent for the coming weeks and months, eventually taking my BP at 8 o’clock (176/104). The day was much quieter than any so far. In the late morning I received a call from the daughter of a friend, who had died some years before. She had seen my Facebook post and was calling to see how I was. I have known her for all but one day of her life. My partner overheard the conversation and later I got into trouble for expressing things I had not yet told the step-daughter. My partner’s anger was not particularly ameliorated when I tried to explain that I had only been answering questions not previously asked. I probably should not have added that our friend’s daughter had an empathy due to her having lost her mother at a young age and being diagnosed with epilepsy.

I took my BP a further three times: at 3 o’clock (170/97); at 6:30 (197/111) and at 22:00 hours (197/106).

Wednesday was the day the step-daughter went back to her ski season. I woke early, got up and tried to write. The taking of my blood pressure was fast becoming a bit ritualistic and settled into a pattern of four measurements a day.

Eight in the morning (190/112)

Lunch time normally at 1 o’clock (178/102)

Tea or dinner time at 6 pm (187/109)

Then prior to bed at 22:00 hours (191/104)

Magnetic Resonance Imaging

Nobody has an MRI Scan for the hell of it.

So it is fair to say that the whole experience is not particularly pleasant. There are a number of reasons for this: you have to at least suspect that there is something wrong with you and the procedure is not the most comfortable thing you will ever do.

In my case I was having one because it was almost certain that I had had a Stroke. The medics were almost certain but wanted the final confirmation that only an MRI Scan could bring.

The whole concept of the MRI Scan got off to a poor start with me when it looked as if even the wait for one would mean a longer stay. I had come into hospital on the Thursday evening and by the early hours of Friday morning I had been admitted. It was clear, very early on, that I was not going home again until the Consultant had seen the results of the MRI, the CT scan I had had before admission not being enough. Of course this requirement came with the expectation that the next available slot would be sometime on the Monday.

On Friday, having almost prepared myself for a weekend sampling the delights of a diner, bed and breakfast stay curtesy of the NHS, I was somewhat taken aback to be informed just as afternoon visiting began that I could have my scan but it needed to be now. Having changed into the “Hospital Gown” I was given and put on my shoes and socks I waited. Within moments an orderly appeared who, after advising that I put a jacket on if I had one, told me he was to escort me to the scanner. Not knowing how long it would take, or even where it was in the hospital, I assumed it would be similar to the CT Scan, a few minutes so I told my partner that I would be OK and that she should wait for me. How wrong I was.

The MRI Scanner was not just in another part of the building but elsewhere on the site, it took ten minutes to walk there, where I was left in the hands of two technicians who where at least expecting me. After the shortest of waits, during which I filled in some minor paperwork, I was led into the scanner room. Once I had been asked to take off my shoes, but leave my socks on, and jacket I was told lie on my back on the gurney with my head toward the machine. After placing a tube in my hand, for emergencies, and plugs in my ears both technicians disappeared into the control room but not before warning me to lie very still and advising me that it would only take a couple of minutes. Following a slight jolt I began to enter the tube that is the MRI Scanner.

I don’t generally suffer from claustrophobia but the closeness of the walls, the antiseptic whiteness of the tube and the deep mechanical sound made me feel uneasy.

Suddenly I was returning to the much more comforting surroundings of the scanner room. Believing that it was done I began to sit up but was told to lie back down by the approaching technician who went on to explain that she needed to fit an apparatus to my head that would keep it absolutely still. The contraption that she set about constructing about my head felt like a close fitting Meccano helmet, only made of plastic: metal and the magnetism of the scanner not being compatible. The building of this device seemed to take forever and apparently required much delicate placement and replacement of large amounts of foam padding. Eventually the technician seemed satisfied and retreated back to the control room. Again I entered to tube but this time I took a feeling of being trapped in with me. To my relief, seconds later I was making the reverse journey, only for the technician to play some more with her feat of engineering, before ensuring that I still had the bleeper in my hand and leaving again. I was encased in the tube for a third time. This time the disembodied voice of one of the technicians filled my ears as she told me that I had to stay completely and totally still and that it would only be a few more minutes. Oh, and that I should try to relax. Easy for her to say!

The noise came back and all I could do was try to follow instructions. I was not sure if I was allowed to move my eyes so I looked straight ahead but that made everything feel even closer so I closed them which had the effect of making time elastic.

After what felt like hours but was in actual fact only a few minutes the noise faded and I began to slid out of the tube. This time both technicians appeared either side of my head and were deconstructing the plastic helmet. And they were smiling!

I was told to go the waiting area while they checked the results. So replacing my shoes and jacket, to cover the gap at the back of the gown that is exactly what I did. Before long one of the technicians reappeared to confirm that the results were fine and that I could go back to the ward. As I got up to leave she said that I was to wait until someone came to escort me back. So I waited. And waited. And waited. And waited.

Eventually another orderly arriveded to accompany me up to the ward, where I arrived just as the two hours of visiting time came to an end and my partner had to leave!

Then began the wait for the results. 

Hospital - Discharge

If I had been asleep I’m sure I would have been woken at midnight so my blood pressure (160over 126) could be taken.

And perhaps the same would have happened at 05:00 when when it was 172 over 118.

So began my second day in hospital as a Stroke Survivor. Not that there was much reason to believe it but I had a hope of being discharged today.

As I was awake with zero chance of that changing I went off in search of a shower.

After breakfast my blood pressure (109 over 116) was taken for what turned out to be the last time while I was in hospital.

I spoke to my partner, mid-morning, who told me that she was just about to leave for the airport to pick up the step-daughter and might not be back in time for afternoon visiting.

Not long after that call I received another visiter, a late middle aged man. Who after introduced himself as a Consultant told me that my MRI Scan showed that I had had a small Stroke.

It was not really news but further confirmation.

Standing at the foot of my bed this Consultant told me that he saw no reason why I should not go home today. When I asked what I what I was supposed to do he advised getting my blood pressure down to 140 over 85 and to keep it there: he even jotted it down on a page from my book. When I asked how I was to do that he suggested that I keep taking the tablets and buy a blood pressure monitor. I asked if I should see my doctor to which he answered, “I don’t see the need”. After reminding me that I was not to drive for a month he left.

A few minutes after the Consultant’s departure a nurse came in to tell me that he had signed me out but I would have to wait for my prescription to be fulfilled.

Alone again I phoned my partner with the good news. She was happy but had to tell me that she would definitely not make afternoon visiting as the step-daughter’s flight had been delayed but that she would get to the hospital as soon as possible.

The waiting began.

When the nurse eventually reappeared I asked for confirmation on some of what the Consultant had said. Telling me that she would have to check she left.

A few moments later the Consultant reappeared and he was angry. He made it very clear that he had made himself very clear and asked why was I questioning him. I tried to tell him that I was not questioning but that there were a few things that I was uncertain about. When I replied “my doctor” in response to his demand for specifics his was that I could if I wanted to but there really was no need.

Considering that he had been very clear that I needed to keep my blood pressure under control perhaps having a go at me was not the wisest of moves.

With the Consultant’s second egress I phoned my partner to tell her how frustrated I was feeling. The news from the airport was not great as it looked like they would not be back until the evening.
I was left no option but to wait for my drugs to be delivered.

So that’s what I did. Wait and wait and wait and wait.

Alone!

For a couple of hours nobody entered my room: not even the cleaners. The lunch delivery came and went: why would I have ordered food I was going home?

After the other patient’s plates had been cleared away I saw the young, blonde female doctor, from the day before, for the final time as she scuttled out of the ward, obviously trying but failing to not look in my direction.

The waiting got too much so I went in search of information. I eventually found a nurse and asked if she knew when I might leave. Her answer was that I would have to wait until my meds came up from the pharmacy. Asking when that might be all I got was a shrug and a comment about it “always being like this at weekends”.

I traipsed back to my room.

Throughout the afternoon I had more conversations with my partner and I think my frustration began to really show. I wanted, no needed, to know how I was going to get back from the hospital. She said that she hadn’t thought that far but she would see about it.

At about 3pm the nurse reappeared, I hoped baring gifts, but it was only bad news. The Consultant had forgotten to sign the prescription. He had been paged but if it was not signed and back to the pharmacy by 16:00 it was unlikely that it would be fulfilled, closing as it did at 5 o’clock. At ten minutes to four the nurse confirmed that it had been signed.

My partner phoned with the news that friends in the village were happy to pick me up. Unfortunately I still had now idea when I would be released. All I could do was phone them when and if I had my meds.

All I could do now was wait.

5 o’clock came and went, along with my hopes.

At twenty past five the nurse appeared with a sealed white paper bag: I was free.

Nobody talked me through the drugs that I was to take but then nor had there had been no attempt to discuss what had happened to me and what I could expect in the coming days weeks and months.

I phoned our friends and settled back to do what I had been doing all day.

I eventually left the hospital at 18:30 after forty-four and a half hours! 

Hospital - Inpatient

I was now a Stroke Survivor and to prove it I was in hospital.

It was 03:00 in the morning and I was alone in room B of the Stroke Ward looking at the lights of the city below. I had no pyjamas, I had been issued with toothbrush and toothpaste, so was sitting on the bed wondering what the hell was going on.

At a little after 04:00 a nurse gave me my pills, I never did find out what they were, and took my blood pressure (210 over 129). 

As the sun came up over the estuary in the distance I was disturbed again for my blood pressure (220 over 133) to be taken.

At 08:00 breakfast arrived followed by yet another measuring of my blood pressure (185 over 121).

After breakfast I decided that if it was true that I had had a Stroke I was going to face it head on so I took to Facebook.

“Reports of my demise have proved to be a trifle premature! It would appear that I suffered a minor Stroke in the early hours of Sunday morning. I have received treatment at XXXXXXXXXXXXXXXXXXXX and as long as I keep taking the tablets and live the life of a hermit then I should be around for many more years yet!”

Mid-morning saw the arrival of the Consultant with the usual entourage. After introducing herself she expressed the belief that I had had a Stroke but to be sure she wanted an MRI (Magnetic Resonance Imaging) Scan. I would not be discharged until she had seen the results and as it was unlikely I could be fitted in before Monday I should expect to be there for the weekend. Nodding at two doctors, a pretty blonde haired female and a bearded black male, at the front of her retinue the Consultant commented that they would be looking after me. Both vaguely nodded in my direction but no one looked to make any form of introduction which did not matter, as neither stepped inside my room again while I was an occupant.

Medical visitors continued to appear. As the Consultant was bringing her own visitation to an end the Speech Therapist arrived and stood to one side listening. With the room to ourselves she asked a few questions and I told her of the slight slurring. Her diagnosis was that my voice seemed generally fine and any slurring would probably fade, in time.

The rest of the morning was taken up with having: my blood pressure taken again (194 over 102); my room cleaned and lunch.

As I finished eating two Occupational Therapists appeared to make an assessment which consisted of escorting me, on either side, to the end of the ward, up half a flight of stairs and back. They told me it was a rarity to take the walk with someone without a limp and as such they saw no reason for further therapy.

For what felt like the first time that morning I was left alone with my thoughts.

Afternoon visiting was 2pm to 3:30 and I was looking forward to seeing Kate, who arrived on the dot, bearing gifts: my wash bag; pyjamas; and the laptop. However, before we could say more than hello, a nurse appeared to tell me that I had an appointment with the MRIA scanner at 2:30. Not the best of timing but it was better than waiting until Monday, this way there was a chance of getting out over the weekend.

I will deal with the scan in a later post but with having to be escorted to and from the scanner and the length of time it actually took visiting time was over by the time I returned to my room and my partner had to leave.

My blood pressure was taken yet again (188 over 126) and I tried to get some writing done but was not particularly successful. Other things on my mind I guess.

At around 5:00pm the Consultant appeared, alone, and sat on my bed. She was heading home for the weekend and she wanted to let me know the latest position. She still thought that I’d had a Stroke but the MRI Scan had not yet appeared but there was some hope that it would do so later in the day or possibly early on Saturday. She told me that if it did, and depending on what it said, she saw no reason why I shouldn’t go home over the weekend.

At 6:30pm Kate arrived for evening visiting with two pieces of news: the step-daughter was coming home and would arrive on Saturday; that she had rebooked our trip to see the step-daughter for exactly six weeks time. We had planned to travel to the Alps on the Sunday after I went into hospital. The doctor in A&E had not only confirmed my stroke but had also informed us that I would be barred from driving for a month and that flying was out for six weeks.

Neither piece of news was particularly welcome. The step-daughter rushing to the bedside was making more of it than it warranted, and re-booking the holiday for the earliest possible date seemed not to be taking it seriously enough. I’m sure it was unfair of me but I said as much to Kate, who was less than happy. My overriding feeling was that I had not been involved in any of it.

I completely failed to communicate to Kate just how confused, alone, scared, angry and emotionally drained I was, who left at 8:00pm with a heavy sense of tension between us, even though I had told her of the possibility of being discharged the next day, or perhaps because of it.

I changed into my pyjamas just in time for my Blood Pressure to be taken again (200 over 122).

Hospital - Admission

So my partner believed that I had had a Stroke.

I was in a state of shock. I heard the words but struggled to understand, to accept, what they meant.

My partner told me to get dressed and that we were heading for the hospital. I remember taking time to choose what to wear. Silly really but it seemed important at the time. The combination I finally settled on was: a pair of sandy coloured, heavy weight cords; a grey shirt; a brown jumper and green tweed hacking jacket. Warm and comfortable. 

I knew that going to hospital was the right, the only thing to do but a large part of me dreaded it and I certainly didn’t race toward it. Eventually I found myself in the car, and after a short discussion as to which hospital we should go (it being a choice between one in the two cities we are almost equally distant from) being driven out of the village. I don’t remember that much about the journey, except that there was very little traffic, it being around 8 o’clock on a Thursday evening.

Arriving at the hospital at around 20:30 hours we found a place in the car park and made our way to Accident and Emergency. Being located in a teaching hospital that is the only acute medical facility for a city of around a quarter of a million the Accident and Emergency Department was what you would expect: busy and a little tired. In fact much of the general waiting area was sectioned off due to renovations.

As I was not taken in by ambulance I had to book in at a cramped reception desk. Having given the receptionist my details including name, address, age, sex (yes, I know) I was given a form to fill in. This asked for such things as my doctor’s details before asking for details of my symptoms. After giving the details of what I was feeling, including that they had been apparent since Sunday, I was asked to take a seat and wait to be called.

Taking a brace of seats we settled in for the wait. It was one of the hardest waits of my life. Trying to stay calm I did what, as a writer, I like to do most: people watching. The range of visitors was as wide as you would expect. From those who were looking to use the waiting room as overnight accommodation through to students who had had a rough end to an evening out onto those who were obviously in line for multi-use rewards. Of course there those who, came in after me, were seen before me, which only added to one’s frustration. The wait was not helped by it being almost impossible to get anything to eat or, more importantly, drink.

The government has a target for Accident and Emergency Departments: 95% of those attending A&E must be seen, treated, admitted or discharged in under four hours. Which meant that I was likely to be out of there by half past midnight.

At just after a quarter to one I was called forward to be seen. Entering the treatment area I was meet by a senior nurse who took my temperature, blood pressure (224 Systolic over 140 Diastolic) and tested my ability to move and control my arms and legs. The nurse left me and my partner alone for a while in the cubicle. The next person through the door was a doctor.

As it turned out this doctor, a Registrar, was on his last shift at the hospital. He was from the Indian Sub-Continent and was returning the following week: the pressure of working in A&E being one of the reasons.

Putting me through the same range of physical tests as the nurse the doctor told me that, he too, thought that I had had a STROKE.

There was the conformation I had been dreading.

The doctor told me that I needed to have a CT (Computerised Tomography) scan and left. The nurse returned to tell me that I would have to change into one of those backless gowns. Dressed in the recommended fashion: gown; underwear; socks and shoes, I toddled off to the CT scanner. Lying on the movable bed I was whisked through the metal hoop that was the CT scanner.

Returning to Kate in the cubicle I changed back into my day clothes.

At about 01:30 in the morning another nurse came into the cubicle. She introduced herself as the on call Stroke Nurse. She was warm and friendly but very professional. Taking my blood pressure (238 over 136) again and putting me through a similar range of functional tests as the previous nurse and the doctor she told me that I would be admitted, no matter how hard I argued against it.

After being left alone again for half an hour the Stroke Nurse reappeared to escort me up to the Stroke Ward. It appeared that another Stroke Survivor had been roused out of their bed so that I could be admitted.

I was furious!

Why should anyone be woken in order to give me a bed?

Especially there was no chance that I would be getting any sleep that night!

On the ward, which was located on the fifth floor, we were met by a nurse who directed us to a side room and after accepting responsibility for me she took my pulse, my temperature and my blood pressure (250 over 140).

By 03:00 on the Friday morning I was alone in my room on an upper storey of a hospital in a medium sized city having to come to terms with the fact that I had had a STROKE.

Attack

In the early hours of the 25 of January 2015 some wee beastie, as Scots friends would say, stole into the bedroom and after removing the top of my skull used a baseball bat to give my brain a bit of a thump. Then this wee little monster seamlessly rejoined the two parts of my skull and silently bidding me goodnight disappeared into the darkness from whence it came.

In other words: I had a STROKE.

As the medics would say I had an acute medial inferior pontine perforator infarct on the left with signs of chronic microangiopathic changes and lacunar infarcts.

In plain English, I had a clot in a blood vessel which starved an area of my brain of oxygenated blood.

It all happened, as I said at the beginning, over the night of 24/25 January.

We had been to a Burns’ Night Supper in the Village Hall on the 24th.

Kate and I had been following a “dry January” (probably will not be doing that again) as we had done many times before. We did, however, generally give ourselves a dispensation for the Burns’ Night Supper, you have to really. The supper was the usual affair with Haggis, Neeps and Tatties, music and dancing. For the last few years it has been organised by a couple in the village, who do a great job.

The evening commenced with a few words of welcome from the chairman followed by the Selkirk Grace.

The Haggis, carried by the chairman’s partner, was Pipped in to an accompaniment of slow hand clapping.

Once the Haggis was in place at the top table a rendition of  Burns’ “Address to a Haggis” followed, though thankfully not all eight verses, at the end of which the Haggis was cut open and taken away to be served.

The meal consisted of 

Cock-a-leekie Soup

Haggis with Neeps and Tatties

Sherry Trifle

Coffee

And Whiskey

The speeches were interesting.

The chairman gave the speech to the Immortal Memory of Rabbie Burns including extracts of his poetry which, if a little long, was very entertaining. 

The Toast To The Lasses, given by a local farmer was, to put it mildly, intriguing. It was dripping with sexist comments and was welcomed with a ripple of stunned applause and I probably wouldn’t have wanted to be in his house of all girls over the next day or so.

The Response, given by Kate although written by myself, went down well by comparison and received the plaudits it deserved.

The evening was rounded off by traditional Scots Dancing.

Being a village and Burns’ Night Supper being almost the sole preserve of the older section of its population the evening drew to a close at around midnight.

I had not had very much to drink, a couple of glasses of wine and a tot or two of Whiskey at the supper and a further tot or two when we got home but probably a lot after nearly a month off. We went to bed at around half past midnight. I simply could not settle and tossed and turned. Worrying that I would wake Kate I decided to move to the step-daughter’s room, she being away in the Alps doing a Ski Season. Things were no better in the new room but I think I did eventually drift off to sleep. When I woke on the Sunday morning I certainly felt under the weather but put it down to the minor excesses of the evening before. The Sunday was quiet, with a little writing but not much else.

During Sunday I did become aware of a number of what I now know as deficiencies. My right hand felt a little numb and vaguely leaden. My right arm felt heavier than usual, almost as if it was carrying a couple of extra pounds. My right foot was a slightly stiff and at times the ankle dragged a little, with the leg feeling as if there was a weight strapped to it. When I was tired my speech had a touch of slur to it. And then there were the headaches.

On the Monday my Kate headed off for what was a long week away, to return on the Thursday, while I continued to deliver a large number of parcels. For the past two and a half years I had been working six days a week delivering up to ninety packages and travelling between thirty and one hundred miles a day and that was to continue during that week with me finishing well after seven most days and sometimes as late as nine.

The deficiencies got no better as the week went on. I also found that I was getting more and more tired, not helped by the fact that I was on the receiving end of an almost total lack of sleep.

On Thursday evening I was making my way home at around seven o’clock and as I came through the village next to ours I was caught by a speed camera van. I had slowed down and really was convinced that I was travelling at 30 miles an hour but apparently not.

Arriving home a little flustered and somewhat annoyed I was met by Kate who had been home for about half an hour. After listening to me rant on about speed cameras for a few minuets she asked if I was OK. When my answer was slightly slurred she said that she thought so. After telling me that I was obviously no better she suggesting that I go and have a shower. 

Kate was waiting for me when I finished my shower with the news that she thought that I had had a STROKE.