Why do People Think I'm Drunk

There is a strange thing that has happened since things have settled down after my last Stroke. People seem to think that I’m drunk, well if not drunk at least under the influence.

Let me clarify. It is not everybody nor all of the time. But it seems to happen when my deficiencies reappear.

To be perfectly honest I can understand how the confusion occurs and perhaps you will too if I remind you of my deficiencies.

Headaches

Slurring of words

Losing track of words and sentences

Forgetfulness

Slight dragging of my right leg

Slight loss of power and grip of my right hand

Sudden shakes of the right arm

Slight loss of perception on the right side resulting in walking into things

Sudden tiredness and fatigue

Lack of Sleep

And thanks to the Horner’s

Sweating, especially on the right side of the face

Watering of the right eye

When I am tired, and sometimes when I’m not, some or all of the above show themselves. When they do there is often little or no warning and they can last for anything from a few moments to a couple of hours.

Out of interest I will now list some of the symptoms that those who are under the influence of alcohol display.

Anxiety or jumpiness

Clumsiness

Depression

Fatigue

Headaches

Insomnia

Irritability

Loss of appetite

Nausea or vomiting

Poor memory

Shaking or trembling

Slurring

Sweating

It does not take long to see that there are a number of symptoms that appear on both lists

Clumsiness

Headaches

Fatigue

Lack of sleep

Poor memory

Shaking

Slurring

Sweating

Even I can see that for those who do not know me and that I have had a Stroke could, possibly, make the assumption that I was under the influence. But for that know me? My nearest and dearest?

It would silly of me not to acknowledge that I do not drink and have never done so. It is also true that I have, in the past, drunk more than I should have and probably more than was good for me. But that was a long time ago and for a number of years now my drinking has been at a much lower level and my relationship with alcohol changed completely after my last Stroke. I have virtually removed red wine from my diet, the same with whiskey and now normally restrict myself to two bottles of beer of an evening and then only at the weekends.

Those who know me will also know that there is no pattern to the appearance of my deficiencies and they can appear wether I have had any alcohol or not.

There are other difference between my deficiencies and what I might present with if I was suffering from the effects of alcohol.

1. My deficiencies can appear with little or no notice

2. My deficiencies can disappear just as rapidly as they appear

3. My deficiencies, when they do appear, can last anything from a few seconds to a number of hours

4. My deficiencies can appear singly or in any combination

5. My deficiencies very rarely, if ever, appear when I obviously have a drink, say at a party or other gathering

6. My deficiencies appear when they want to, regardless of whose company I am in

There is one other striking element about all the times that my deficiencies have appeared, four or so, and have been wrongly attributed to alcohol: they have only happened when my step-daughter and I have been in the house on our own, or on one occasion with her and her boyfriend, in the evening.

On the first occasion the two youngsters were ensconced in the lounge, watching mindless television. I was in the office writing and then set about cooking dinner, Spag Bol. I do not remember what I produced but it was a little more than baked beans on toast. Around 21:00 I served their meal to them on trays so as not to interrupt the essential viewing. As a result of my unsteadiness and the fact that I was tired I could only carry one tray at a time. I stayed to chat to them for a few moments and then went back to eat my own food. I eventually went to bed at around 22:00, wishing them good night as I went. Unbeknownst to me the step-daughter had phoned her mother, after I went to bed, to say that she was worried that I was drunk. The following weekend my partner confronted me with the accusation that I was the worse for wear, which came completely out of the blue, a charge I strenuously denied. The evidence that that I had been more than a little tipsy was three fold

1. I seemed unsteady and was “holding” on to the mantlepiece

2. I was slurring my words

3. A half bottle of wine that had been in the kitchen was now empty

As I explained, not that I should have had to, the first two spoke for themselves and as to the third; I had used it in the meal.

The next three happened close together, a little over a week apart, almost two years later. Again my partner was working away but this time the step-daughter and I were alone with the dog. On all three occasions I got back from work before the step-daughter and so was up in the office, working on my latest book. As I always do, I came down to greet her and we had a chat about our days. On the first of the three she expressed a desire to what some, in my view, particularly rubbish TV so I told to enjoy it but I would continue working. Around 21:30 I grew tired and closed the computer down and instead of going to bed, as I probably should have, I asked if the step-daughter would mind if I watched some tennis on the large TV. I stayed up far too late as Johanna Konta was taken into a third set and in fact I feel asleep watching it, eventually going to bed at a round 23:45. 

The second and third occasions followed exactly the same pattern as the first except that the step-daughter told me that she was probably going out for the evening. During the discussion about food the step-daughter said she would be eating out. On the third occasion I told her that two of the older people I do the gardens of had told me that they can go days without seeing anyone and we agreed that it was sad the way old people are often lonely, as did my partner when I discussed it with her on the phone. 

On neither occasion did the step-daughter end up going out but in the meantime I had gone back to writing and produced my own food, going to bed when I grew tired. It was during the third evening that the step-daughter decided that I was up in the office drinking and phoned her mother worried that I was going to fall down the stairs; which to be honest I have done four times after my last Stroke but not due to drink.

The following weekend my partner and I went up to Edinburgh to attend the “Fringe” and it was on the Sunday that she decided to confront me with the belief that I had been up in the office “secretly” drinking and that it was not fair on the step-daughter. I was gob-smacked. I asked why she would say that which is when she told me about the fears of the step-daughter. I told her that I could see how the step-daughter would be worried about my falling down the stairs, as indeed was I, but asked why she would think I was drunk and what evidence she had. The partner accepted that there was no physical evidence and that the idea was based only on the “feeling” of the step-daughter and a little bit with more than a little nod toward my history with drink.

There was no getting my partner to even conceive that she and the step-daughter might be wrong! Worse than that my partner considered the lack of evidence to be conclusive proof of my secret drinking.

So I ask the question again.

Why do people think I’m drunk?

Sleep, or lack of

I know that every Stroke is different and that all Stroke Survivors is left their own deficiencies: for me one of the largest, perhaps the biggest, changes that I felt was sleep, or lack there of.

I had considered myself a good sleeper, normally needing no more than five or six hours a night. True, it was not unknown for me to have a “catch up” when I would sleep for up to eight. My normal sleeping pattern was to go to bed late, often between 01:00 and 02:00 rapidly fall asleep and then wake and rise around 07:00.

I am a writer with, at the time of my last Stroke, my first novel nearing completion and the second begun. Over the years the book has taken to write I developed the habit of writing late into the night and at the weekend. Before my last stroke I had been working six days a week, often till 20:00 or later, so with the normal family stuff the time I had to write was limited.

The night of my last Stroke all that changed.

Obviously that first night of my new life, or at least the start of the journey to my new world, was heavily disrupted. (See Post: Attack) As were many night to come. In all honesty I have no recollection of the nights between my last Stroke and going to hospital.

However, if you have read any of my previous posts you will know that, I do have clear memories of my first night in hospital. (See Post: Hospital Admission) That night I lost the first of many many hours of sleep.

Once I was home a pattern rapidly formed. I would wake early. Sometimes I would see 03:00 and on the odd occasion 02:00 but mostly I woke a little before 04:00. When I did wake I almost always found further sleep impossible. I have never been good at lying in bed once awake and now was no different. Many nights I would try to stay comfortable but as more often or not there were pins and needles down my right side it mostly proved hopeless: part of the reason was that as the tingling started a thought arose that they might the precursor of another Stroke. The only thing I could do was get up. Being up was no easier.

For a long time I became obsessed with my with my Blood Pressure, often taking it four or more times a day. Normally I waited until 08:00 to take the first reading but on the 19^th February, for instance, I measured it six times starting at 04:00 and then every four hours or so until I retired at 22:00.

During the first few weeks another habit emerged that was to have a profound impact on my sleep patterns. By 22:30, most days, I was more than ready for bed. By “ready for bed” I mean completely and suddenly. No matter what I was doing my eyes would get heavy, and still do, and I knew that it did no good trying to fight it. I had to get used to taking my leave, no matter what was happening, and ascending to bed, where I was usually asleep in moments.

Mostly I slept soundly until I woke and then the process began again.

I tried very hard to keep from disturbing the rest of the family but of course I was fooling myself. Firstly it has a major impact on those around you if, regardless of the circumstances, I was having to go to bed much earlier than everyone else. Secondly, my being up and about before the rest of the house on occasion caused slight difficulties. For example: when my step-daughter and her boyfriend came back from their ski season he would spend roughly half the week at our house, nothing wrong with that. He had a job that meant leaving around 05:00. Often I would be up and writing when he came into the kitchen. These meetings were never easy, for a number of reasons.

He, in common with many young and not so young people, had left barest possible time between getting up and departure.

He was only just awake.

I had been awake for sometime and even before the Strokes my brain had always been active the moment it woke, something not always appreciated by my partners.

Just what do you say to the step-father of your girlfriend at 05:00?

It was not his fault: there had been no discussion or communication about what my Stroke meant but these unsatisfactory dawn encounters only added to the loneliness I was feeling. (See Post: The Loneliness of the Stroke Survivor)

The other problem being awake for long periods in the dark is that it gives your brain time to think, even a damaged one like mine. Unfortunately it is almost always the case that thoughts at that time are rarely positive. In my case I would argue that the very first thought in my head is actually a very positive one. In the early days it was 'Good, I’m still here!’, but over time has transmuted into ‘Still here, then? … OK, lets get on with the day.’

All in all my new sleep patterns are giving me the same amount of rest that I was getting on occasions in my previous life and on some days more. But has I now don’t have the energy reserves that I did then it causes some tiredness issues.

My new sleep patterns do not just affect me. They have almost as a dramatic impact on those closest to me. There are times when I am unable to take part fully in the happenings of family life. In time I hope that it may ease but as I am now two and a half years into the journey it is as it stands at the moment.

The Loneliness of The Stroke Survivor

There was one subject that kept coming up when ever I spoke to other Stroke Survivors and that was just how lonely I would feel.

To begin with I was dubious

But when you actually think about it of course you would.

The first and most obvious reason for this loneliness is the Stroke itself. A Stroke is a very individual thing, in two ways. Firstly, every Stroke is different. Secondly, every Stroke happens inside your head. Even the deficiencies that a survivor may be left with are as a result of the damage to the brain and in many ways are the ultimate in psychosomatic injuries.

For me the first feelings of being alone were at the time of my last Stroke. The main reason for this was that like many people mine happened during the night and not wanting to disturb my partner I even moved to another room (See Post: Attack).

The next time I felt alone was as I sat in the side room of the Stroke Ward a hours hours after being diagnosed as having had a Stroke. It was not yet confirmed, only the MRI Scan would do that (See Post: MRI Scan) but it was almost certain. It was early in the morning and I was dazedly watching the lights of the city below. My partner had returned home a couple of hours previously and I had not seen a nurse or other member of hospital staff in some time (See Post: Hospital - Admission). In those hours the mind has plenty of time to think and some of the concepts running round my scarred brain were:

Fear

Pain

Frustration

Anger

Confusion

Anxiety

Loneliness

Loneliness was the one that began to take up more and more of my limited cognitive capabilities.

The structure of the hospital, both physical and operationally, appeared designed to increase the loneliness of patients. Being in a side room certainly did not help. The operational procedures in play on the Stroke Ward, with its limited visiting hours and what appeared to be staff shortages, meant that I was on my own for much of the day and night (See Post: Hospital - Inpatient). Even having my MRI Scan dug into visiting time. Where was the flexibility of the hospital staff and procedures?. The overall feeling of loneliness engendered by my stay in hospital, short though it was, were exacerbated by my discharge (See Post: Hospital - Discharge) and the start of my readmission into the wider world.

As with everything around Strokes the journey back into the world is highly individual with some being easier than others. As mine involved arriving home to a dark and empty house to be greeted only by Bruce, the dog, (See Post: Arriving Home) I leave it to you to judge which it falls into.

The loneliness I felt only grew as I started to come to terms with what had happened to me. Slowly, I began to understand that the world I had known prior to my last Stroke was one that I could never return to and that the first part, at least, of the journey to my new one was one I had to undertake myself. It was obvious that my previous lifestyle had had led to my Strokes and I had to workout what that meant. For me it seemed clear that it was necessary for me to question every part of my life.

As I did so the list of things adding to my feelings of loneliness I began to grow.

The Loneliness of the Dark was an early addition. I was finding sleep hard to come by, resulting in many many sleepless hours while the rest of the house slumbered. It did not matter if I stayed in bed or rose, my mind struggled regardless. Almost without exception first thought that went through my mind when I woke was 'Good, I’m still here!'. The night is still a thing to be scared of and the morning continues to come as a surprise.

Next to arrive was the Loneliness of the Light. The searching rays of the sun highlighted the true distance between where I was now and my previous world. It was in the light that I saw the world moving on with increasing pace. A pace that I had the feeling that  I would forever struggle to keep up with. The world I was left watching included those closest to me. Not surprisingly they had to carry on with their lives. I have a friend, who while not having had a Stroke has suffered two life endangering and changing illnesses in recent years, who has a term for this ' … they stop grieving'. To begin with I struggled with this but as time went by and I had the space to think about it I realised that it was exactly what they do and that it was perfectly natural. That realisation only added to The Loneliness!

The next to be added to the roster proved to be perhaps the greatest loneliness. I found myself thinking about this subject quite a lot and realised that it came in many guises: the subject being The Loneliness of Failure.

My failure to grasp what was happening sooner. I struggled to understand what was happening to me. I had no route map and was finding my way through mist with a very uncertain touch.

My failure to understand what it was I needed. This was, of course,  a direct consequence of my not understanding what was happening to me.
My failure to find more effective ways of communicating with those closest to me. The more I struggled the less I seemed able to make my thoughts, worries, needs and yes, the positive points clear.

I was not the only one who failed in one way or another.

The failure of those closest to me to engage with my Strokes. There was a pseudo engagement by a simple recognition of the fact of my Strokes but not the facing up to the wider actuality. This lack of engagement had many faces. Some virtually ignored it as an actuality, except on a very superficial level. Others buried themselves in the technical side of Strokes. Then there where those who “buried their heads in the sand”.

The failure of those closest to me to give me a lot of what I needed, even when I was able to tell them.

The failure of those closest to me to communicate effectively, and in some cases at all, their own feelings.

The failure of the medical services to effectively provide what I needed. There were some honourable exceptions, RP the Stroke Nurse (See Post: Stroke Nurse - First Visit) being a case in point, but those failures stretch back to my diagnosis with Horner’s Syndrome (See Post: Horner’s Syndrome).

Perhaps the greatest failure was mine.

The failure to understand what those closest to me were going through. In the selfishness of my Stroke I forgot that those closest to me were embarking on their own journey and that their destination was just as uncertain as mine. They were dealing with their own demons and were having many of the same thoughts as I:

Fear

Frustration

Anger

Confusion

Anxiety

And yes_ Loneliness

The only thing I put forward in mitigation is that I had had a Stroke or two.

The culmination of all this failure was a drifting apart into even further loneliness, which brings us back to the beginning!

Exercise - GP Referral

I arrived home, from what was supposed to have been a relaxing holiday, completely exhausted and totally wiped out emotionally. Exhausted from the physicality of travelling, the altitude and doing more physically than I had been since the last of my strokes. Emotionally I was finding it hard to deal with other issues. I was still struggling with the after effects of my meeting with the Consultant (See Post: Consultant’s Outpatient Appointment) where I was told that I had had numerous strokes added to which I had to assimilate finding additional levels of deficiencies.

A week after arriving home I had my next visit from my Stroke Nurse (RP). She was not surprised that I had had a hard time on holiday and indeed she had counselled against my going at all. RP stressed, yet again, that it was not possible to develop new deficiencies. No matter what I said she was adamant. Sensing that I would get nowhere we agreed to simply accept the situation and look at what my options were, which is when RP told me that there was no way that I would meet the requirements for Community or even Hospital Physiotherapy, for two reasons: my relatively minor symptoms and budgetary constraints. But RP did introduce the concept of GP Referral.

Under this programme I would be given 20 seasons at my local public gymnasium. Well, not given, I would have to pay £33, which obviously equated to £1.50 each, which was a major saving on the over £6.00 a session for the general user. We filled out the paperwork and RP took it with her to have my GP sign.

A week or so later there was a message on the house phone from a young woman NC who is an Instructor at my local Leisure Centre. Returning the call we arranged date for my acclimatisation session a week later. The concept of having an instructional session was interesting; I have been into many many gyms in my life and I didn’t really need telling how to workout.

Arriving at the Leisure Centre at the appointed time, 15:00 on Thursday the 9^th of April, I was told that I would now be meeting with another Instructor (ZH), who is the GP Referral Instructor. ZH took me to a side room where we talked about my condition and what I was looking for from exercise as well as explaining the GP Referral scheme and filling in some paperwork.

Together ZH and I decided that I was not looking to build muscle or even to lose weight so the range of equipment and activity was to be a mixture of cardiovascular work, free weight and resistance machines. After further in depth discussion it was agreed that what I was looking for from my time in the gym was a way of working on my right side without pushing it too hard and with many repetition in order to help my brain could find and get used to different pathways but without allowing my left side to grow weaker by ill use.

Finally ZH took a range of measurements.

Weight - 17 st.93.9 cm (108 Kg)

Height - 5ft 9in (1.75 m)

Waist - 37in (93.9 cm)

Body Mass Index - 35

Body Fat Percentage - 32.3%

Blood Pressure - 163 / 93 (Which ZH confirmed as being higher than she would want. Thanks for that earth shattering piece of news)

Heart Beat - 72

Having set my bench marks we moved into the Gym where ZH checked that I knew how to use each piece of equipment.

ZH watched as I worked my way through each peace of equipment. My deficiencies showed themselves the moment we reached the resistance machines where my right side struggled to move the weights, especially as I to the end of the second repetition and entered the third, and my left had to work harder to cover. When we moved on to the free weights both the Front Raise and Lateral Raise showed up my the right side showed definite signs of muscle retardation and spasm which meant that the arm was slightly restricted in its movement, specifically that it could not raise to the same level as the left and that it could not hold a weight for as long and began shaking at an earlier stage.

The package of exercise that ZH developed was as follows

Cycle Machine

Warmup - 15 mins @ level 6

Resistance Machines

Back Extension - 60 lbs @ 2:5 ratio

Chest Press - 40 lbs @ 2:5 ratio

Leg Curl - 30 lbs @ 2:5 ratio

Leg Extension - 30 lbs @ 2:5 ratio

Treadmill - Walk

15 mins @ level 1 and speed 6

Free Weights

Front Raise - 3 X 15 repetitions @ 3 Kg

Lateral Raise - 3 X 15 repetitions @ 3 Kg

Bicep Curl - 3 X 15 repetition @ 4 Kg

Rowing Machine

1000 m @ level 10 resistance

Cycle Machine

Cool Gown - 2 mins @ each level from level 6 down to 0

The whole regime took between an hour and 15 mins and an hour and a half. I was warned by ZH not to do two things. One, to push my right side too much and secondly, not to let my heartbeat get too high. She said that what I was aiming for was resting heartbeat plus 50%.

Normally ZH ran GP Referral groups on a couple of days a week, where people with similar conditions worked together. We agreed that as I was beginning to go back to work I might find it difficult to attend these groups. In view of my being used to gym work it might easier if I was to find two days a week that I could manage under ZH’s supervision, of course

I cannot say it was easy but nor was dealing with these new found deficiencies. To begin with I found that I was tired after going to the gym, which would last into the evening but as the weeks passed I could see that my stamina increasing. This was evident in two ways. The time that I needed to rest between repetitions and different exercises began to reduce and the tiring effect of the exercise got less.

My MRI Scan - What Rot! Cont.

The story of my attempt to gain access to my MRI and CT scans continues.

I do at least know have copies of both and that is where it is stalled.

I have put a redacted MRI image on the side bar of my blog site, but if you are reading this you have probably already seen it.

So here is part two of the story.

But first a quick summary of events so far (for a more detailed account see previous post - My MRI Scan - What Rot!). As is my legal right I requested copies of the MRI and CT scans that I had taken when I was in hospital after my last Stroke (see posts - Hospital - Admission, Hospital - Inpatient and Hospital Discharge) only to be told that it was impossible as I had AppleMac computers.

The answer to the question I posed at the end of my first post on this subject is - A Long Time.

In early April 2016 NH the RIS Co-ordinator at the hospital informed me that she was looking into the matter with the intention of getting the scans to me as soon as possible. 

On the 29^th of  April I received an email from her in which she confirmed the results of her investigations were that there was no software that would allow Mac users to view the scans as they could in hospital. She did however assure me that she could provide a disc with JPEG images on but as it would have to be unencrypted I would have to go to the Radiology Department to pick it up personally. She also said that if this was acceptable to me she would go ahead and would let me know when the disc was ready.

On the 3^rd of May I replied that I was happy that NH had found way round the issue and asked if it would be possible to email the images to me.

I waited.

On the 27^th of May I decided that the waiting had gone on long enough so sent another email to NH which I copied into SK (Patient Administrator), in which I asked if she had an answer to my question about emailing the images to me. Within moments I received n automatic response from NH telling me that she was not checking her emails “on a regular basis”. Twenty minutes later I received a reply from SK In which she claimed to have sent me two emails during May, one on the 11^th and the other on the 12^th. SK confirmed that she had agreed with NH that she would produce an unencrypted disc and if I was happy she would post it out recorded delivery. I sent a reply thanking her and giving my permission.

I expected an another disc to be winging its way to me by in the very near future.

On the 10^th of June I got tired of waiting.

It had been more than six months since my first contact with the hospital and I have to say that I was frustrated and perhaps a little angry.

I asked for the telephone number of the Cheif Executive Officer. Within moments I found myself talking the to a lady called RT who was actually the PA to the Chairman but was covering for the Chief Executive’s PA while she was on holiday. I told her my story and she promised to look into it and get back to me. A few minutes later she was back on the phone when she told me that she was asking the head of IT, a gentleman by the name of MS, to look into the issue and almost immediately I received a copy of an email that she had sent. Hot on the heel of this one an automatic reply landed in my inbox which indicated that MS was out of the office. As there were contact details for MS I dialled the number. The phone was answered by a member of his team who listened while I went through my story again. The young man who told his name was PT agreed that the software for scans was not compatible with AppleMacs but that it should be easy to find a way round the problem. He left me with the promise that he would get back to me.

Again I prepared to wait but this time is was only that afternoon when I got a phone call from PT telling me that he had Flash Drive containing JPEG images of both my CT and MRI scan and asked me what I wanted him to do with it.

The Partner hand Step-daughter where on holiday in Corfu and I was fairly sure that work would be quiet on the Monday so I asked if it was possible for me to pick it up in person. He agreed that it should be possible but he would leave it for SK to make the arraignments. Not long after that call ended SK was on the line confirming that she could leave the Flash Drive with reception for me to collect. She did tell me that as it contain private information I would have to provide a form of identity.

On the Monday I made sure that I had my laptop with me and after making a few deliveries I made my way to the Hospital. When I gave the receptionist my name and told that I was expecting a packet to be waiting for me she dug out a white DL envelope which she handed to me after I had shown her my Driving Licence. Taking my laptop and the packet to a table in a small cafe area near by I got myself a coffee and them ripped open the envelope and emptied the black Flash Drive into my hand. Inserting it in to one of the two USB slots of my laptop I was not surprised to see a window open asking for a code to be entered, even though SK had told me that it would be unencrypted. Taking the letter I received with the first PC disc I entered the code that was printed at the bottom of the page. To my irritation it had no effect. I phoned PT from IT who confirmed that he had used the same code as had been used on the first CD. When I read the him the code as it appeared on the letter he told me it was a digit short. When I inserted the now complete code the Flash Drive sprang open to reveal two folders: one labeled CT Scan which contained 345 images and the other called MRI Scan with 623 images.

When I called SK to thank her she told me that she was pleased to finally completed my request even if it was a long way outside the 40 days that the government tells organisations have to do so. She also told me that the only reason it had been resolved so rapidly was because I had gone to the CEO!

HOW SAD IS THAT?

So now I had the images that I wanted.

All I needed now was someone to interpret them for me!

The story continues ………

You can't get New Deficiencies!

All the medical advice is that the deficiencies you are left with after your Stroke are the only ones you will have.

While I of course bow to their greater knowledge as Medical Professional, I am not sure that I believe them, or should I say that it does not feel like that when you have had a Stroke.

I have talked at some length to other Survivors about this and there is some agreement that the advice is, if not wrong, at least miss leading.

I am sure that the medics will be able to state huge volumes of evidence that would support their assertion but I would tell them that is not how it feels.

When days, weeks or even months after your Stroke you come across new things that you cannot do it sure as hell feels like you have a new deficiency!

Of course, I fully understand how this difference of understanding comes about. When you have survived a Stroke regardless of the number or range of deficiencies you have been left with the thing that you do is to rest. This period of reduced activity can often be an extended one. It is only as you begin to feel better does one a little more.

I know that I was very lucky to have the small number and limited range of deficiencies that I was left with I am also typical of a large number of Stroke Survivors. I cannot and nor would I ever dream of  making statements about what it is like to deal with more severe deficiencies.

I also know that the brain begins the task of rerouting almost immediately just as I also know that it can take a very long time. It is only as a Survivor regains a measure of physical strength together with emotional and physiological stability that he or she begins to attempt to do more of the things they were capable of before their Stroke.

So to take my case as an example: in the weeks after I came out of hospital I did very little physically. It is true that I did repaint the kitchen (see previous post Painting the Kitchen) but I was able to take my time, which I certainly did. Whenever I felt tired I rested. The other difference was that it did not involve very much of what I call “high end fine motor skills”. It is also probably true that when doing the kitchen I grew tired before I needed to use those particular elements of my muscle control. Whereas when I was in the Alps attempting to Ski and Ten-pen Bowl the activities themselves demanded that I use them. In both instances it was the inability to push to the outer edge of the natural arc on the right that caused the problem. This meant that when skiing I was able to move my right leg as it swung round the hip but when it came to pressure on the outer edge of that swing as is necessary when trying to turn or come to a stop it proved totally ineffective, with the result that I could not turn or stop: both of which are vitally important when skiing. The same thing happened when Ten-pin Bowling. I knew that my usual choice of Ball was heavier than I could manage so I was more than prepared to use a less heavy one. I could go through the same motions that I had always done, with the same movement toward the toward the line, with the same back lift of the ball, the same bend and movement of the right leg behind the left to clear the right hip out of the way and a reasonable swing and follow through. So, prior to letting the Ball go everything seemed fine, or at least not too bad. Then I let the ball go! The result of which was not at all what I wanted, expected or even hoped for. The first ball barely reached halfway before dropping into the lefthand Gutter. The second made it a little farther but still rolled disconsolately past the still standing Pins. No matter how hard I tried most Balls ended with the same result. I tried everything I could think of: changing my angle of approach to the line; a faster approach; a faster, heavier swing. Generally the only result was that the ball got a yard or two more before heading inexorably for the Gutter. Every so often I did manage to get the Ball all the to the waiting Pins and on one memorable occasion even registered a Spare. I had no idea how and I am sure it was more by luck than judgement. Whatever the combination of factors that enabled it to be achieved I certainly was unable to duplicate them except on rare occasions.

I am convinced that the story I have detailed here is not a new one and I am just as sure that I am not the only Stroke Survivor to have had similar experiences and felt the same range of emotions. I express that level of surity because I have been told so by other Stroke Survivors. One story in particular springs to mind, which is not easy what with my memory. A Stroke Survivor that I know who is a little older than me and had his Stroke after my last one found that he had lost the ability to carryout one of his most beloved hobbies. He was a Calligrapher. A few weeks after his Stroke he felt ready to return to something that had given him uncounted hours of pleasure in the past. I can only imagine the distress he felt when he found the ability to maintain the high level of fine control in his arm and hand to produce the work he had been used to had deserted him. Speaking to him in the months since he has yet to regain his previous abilities.

My plea to medical professional of all types is could you please stop peddling the story that the deficiencies you are left with after your Stroke are the only ones you have. As I have already said I am very well aware that you are technically correct but believe me when I say that coming across a deficiency that you did not know you had feels emotionally and psychotically like a new one!

That being the case to all intense and purposes they ARE new ones.

Having accepted that very simple logic I have one further request but this one is aimed at both health professionals as well as the numerous support groups.

TELL US ABOUT THE PHENOMENON and do so right at the beginning!

Holiday in the Alps

We were on the way to the French Alps where the step-daughter and her boyfriend were doing a ski season. This is the trip that we should have been making six weeks earlier had the last of my Strokes not got in the way. We were taking it as the earliest opportunity after my six week flying ban was up.

Despite the poor start (see previous posts Consultant’s Outpatient Appointment and It felt like I’d had another Stroke) we made it to Manchester Airport for the flight to Chambéry. When originally planning the trip it had seemed like fun to fly to an airport that we had not been to recently and to transfer from there to the slopes using a bus rather than hiring a car or getting a taxi. The fun and games began immediately as the coach we were expecting did not arrive, but we eventually made it on to another and headed for the snow. Chugging through the french countryside I was able to snatch elements of  the 6 Nations Rugby match between England and France on the mobile phone. England had a chance of claiming the championship but fell 6 points short in winning 55 − 35, giving the title to Ireland.

We had to change busies for the run up the hill, finally being dropped in the underground car park below our apartment block after dark, Dragging our selfs and our luggage up stairs we found a fairly bog standard single bedroom ski apartment. In fact it was really just a corridor ending in a lounge / kitchenette with a small bedroom and even smaller bathroom off it and obviously not designed to spend much time in. After visiting the nearest supermarket for a few odds and ends we settled down to await a visitation from the step-daughter and her boyfriend.

On this day of travelling I took my first Blood Pressure measurement at 08:00 (145/92) prior to heading to the airport. The second reading was not until just after landing at 18:00 (local time) (183/97) with a third when we got up the hill and after a little food and vino at 22:00 (131/74) and a finale one just prior to doing to bed at 23:00 (126/71).

The first full day up the mountain, Sunday 22^nd March, dawned bright and crisp, just as you would hope. My 08:00 reading was 139/86. The Step-daughter and boyfriend were working so the partner and I wondered down to the ski hire shop to equip ourselves after which I took my BP (13:00 - 158/92). We spent the rest of day getting to know our little resort and the main one a short cable car ride down the valley, both of which were purpose built. With dusk having fallen I took my BP again (18:00 − 163/100) and then we made our way to the hotel where the kids worked arriving just in time for them to come off duty and for us all to go to dinner. My BP prior to bed at 22:00 was 158/87.

The Monday was not a great a day weather wise so we spent the time waiting for the kids to come off duty getting to know pottering around the resort. As is often the case in French purpose built ski resorts there is not much to do for the non-skier. My partner and I are vastly different skiers. She has skied since childhood, I have not. She has done everything including Black runs and Off-Piste, I have not. I am happy tootling around Green runs with perhaps a dash of Blue with plenty of coffee and Brandy stops, she is not. Sitting in the cramped apartment my partner told me that she was having real doubts about skiing, so much so that she was thinking of handing back her skis. A couple hours of talking and tears later she decided that for the sake of the kids she would give it a go. We met the people in question for lunch and they came to ours for dinner and stayed the night. I only took three BP readings 09:00 (151/91), 18:00 (168/97) and 22:00 (139/82).

The next day, Tuesday 24^th, the holiday really began to go wrong. The partner and I took to our skis. Things did not go well. I really struggled. I have never been the most competent with planks of wood strapped to my feet and it usually takes me a little while to get the snow legs working but I generally find a way of getting by and always enjoy myself: this felt different and I called it a day early. It appeared that while I could move my skis into the correct position I was unable to put any real pressure down through my right leg with that result that turning was next to impossible and the only way to stop, even in the Snowplough, was to fall over. My BP readings for the day were as follows 08:00 - 150/84, 14:00 - 158/95. 18:00 - 168/104 and 22:00 - 153/81.

Wednesday 25^th was when the wheels really fell of the holiday. In the evening it was decided to have a family game of Ten-pin Bowling. With previous experience suggesting that I have a couple of "Strikes" and a few "Spares" each game so I was not prepared for ball to barley reach halfway before flopping tiredly into the gutter, mostly on the left. In each of the two games I struggled to reach 50 points. My co-competitors seemed either oblivious to or did not appreciate the physical difficulty I was in and certainly not the psychological turmoil I was suffering.


Over the remaining days of the holiday I did try skiing again, without much improvement. The only place I seemed able to have any control was on the flattest and shortest of nursery slopes, the one with a Carpet Lift and usually used by real beginners and toddlers. This was no fun, even for me. My BP followed a similar pattern all week.


The tiredness got worse as the days passed and culminated in me being unable to finish the meal that we were all having on the Thursday evening which was the last that the kids were able to spend with us as they were working late on the friday. The partner was less than impressed when I made my excesses and headed for the apartment, even though it was only 21:00. She did accompany me on the dark icy journey back to the flat but her mood matched the temperatures outside. She was very angry that I had “ruined” the meal with the step-daughter and her boyfriend and after telling me off again as I prepared for bed she left me alone and returned to continue the meal.

It felt like another Stroke

I still don’t know how I made it back to the car but I did. Once safely inside I sat for nearly an hour in the driver’s seat and did nothing. There were no tears, not even anger but mountains of emotion, the largest of which was numbness. No matter how hard I tried I could not shutdown the black and white silent movie running at the front of my head, the one that was made up of a constant loop of the images of my brain with the black holes in it. After perhaps an hour I was finally able to make the phone call that I knew I had to, to my partner. I tried to explain what had happened but I failed to do a good enough job, so much so that most of what was a short conversation centred on whether I had upset the Consultant by my response to her questioning if I had taken my meds. It’s not my partner’s fault, she has worked in the NHS all of her working life and has a complex relationship with doctors, which sometimes means that she sees them as omnipotent.

On the drive home and over the next few hours there were many thoughts competing for space in what was already a struggling brain.

The first and almost overpowering one was that everything that I’d been told since arriving at hospital was wrong, well probably not all of it but there were certainly large portions of it that I was having real difficulty deciding which was and which was not true.

The feeling that I had not been told the truth was a very strong one. All the medical professionals that I had come into contact with had assured me that I had had a small stroke and with the proper treatment and life style changes, by me, the chances of having another one were very very small. Well, I no longer fitted into either of those categories. I had had what the Consultant had described as a “massive stroke” and I had already had multiple strokes. Of course I knew that people like my Stroke Nurse and GP had not lied to me but at that moment it did feel like it. If it was unfair to say that these medical professionals had been party to a lie it was true to say that they did not have either the tools or the authority to challenge and test the results given to them by the ineptitude and possible lies of others.

The second was that my high blood pressure had become even more of an issue of life or death than it had been before. So much so that I took it again the moment that I got home (161/91).

It had been made very clear to me that it was my high blood pressure that had caused my stroke (now STROKES). At less than two months after having what was now the latest stroke my blood pressure was still a very big issue for me (and indeed very high, even with the Meds). I was still taking a measurement three or four times a day and it took a real effort not to up that to five or more as I had been at times during February. My Stroke Nurse (RP) was a major factor in my ability to resist the urge.

Another was the issue of the new medicine. As we were travelling the next day there was almost no chance of the Consultant’s request being received by my doctor by the time we left for the Alps, never mind it being fulfilled and I really did not want to be going away without it.

I really could not understand what was going on with the prescribing of the additional drug that I apparently needed. It seemed farcical that the Consultant was able to tell me that I needed a drug, name the medicine and even define the dosage, BUT not issue a prescription. Worse than that, there appeared to be no rapid way of getting her views in front of my GP. Have they never heard of email, text or heaven forbid electronic access to my records?

The possibility of travelling without the Doxszosin brought into focus a whole range of thoughts about the actual holiday.

I had always had reservations about travelling to the Alps and all the meeting with the Consultant did was to reinforce them, but it was so important to my partner. So crucial was it that almost the first thought in her head after I had been diagnosed was the effect it would have on the holiday. Even in the A&E cubical it had had been one of her first questions.

After talking to my partner the next call was to my Stroke Nurse (RP) but she was busy.

The morning following the meeting with the Consultant was busy with packing. Mid morning RP called and I explained the problem with the new meds and she promised to do what she could. As we were loading the car RP called back with the news that she had arranged for me to be able to pick up the prescription that day but we would have to wait until 14:00 hours, which was later than my partner had hoped to leave, not wanting to hit the rush hour traffic.

After picking up my additional Meds at 14:20 we headed west toward Manchester. The journey was as easier than one could expect for a Friday late afternoon/evening.

I had taken my Blood Pressure twice before we had headed for my partner’s mother’s (08:00 − 145/87 and 09:00 − 144/90). I am not convinced that I remember much of the journey along the M62 but I am sure of my BP on arrival (156/95 & 143/78).

The evening got worse from a stress point of view as my partner fell out over text with her best friend from school.

Out-Patient Appointment

As I covered in my post “Hospital - Discharge” I was left with very little information when I returned home, and if anything I was left with the impression that there was nothing I needed to do but monitor my blood pressure and take my meds. So you can imagine my surprise when I received a letter inviting me to an Outpatient Consultation, with the first Consultant I had seen in hospital, at 11:00 on Thursday the 19th of March 2015. As my partner and I were flying out to spend the postponed week with the step-daughter in the Alps on the Friday she had to work and could not rearrange her diary so was unable to come with me.

At 08:00 on the morning of my appointment I took my first BP reading of the day (145/94). I then investigated where the clinic was being held as I did not know the city that well. I finally set off at 09:30 giving me what I hoped would be plenty of time. I arrived at the single story community health centre at 10:30ish and after parking in the street outside I sat for twenty minutes just looking at the entrance. When I eventually made my way into the building I found myself in a classically fashioned NHS community facility from somewhere in the mid seventies. There were very few people, either staff or patient, in evidence, even the Reception was unmanned. Finally finding a non medical staff member I asked for directions to the ‘Stroke Clinic’. Following the man's directions, which took me down the archetypal series of corridors, I came across two nurses, who confirmed that I was in the right place. After handing in my invitation letter I was told to take a seat.

At 11:10 I was called into a side room where I was weighted and my blood pressure was taken (178/105) after which I was told to go to another part of the waiting area. At 11:30 my name was called by yet another nurse and after confirming my name and date of birth I was shown into a standard sized and equipped consulting room with its desk, wash hand basin and examination couch. Sitting at the desk, which was against the righthand wall, was the female Consultant from my first full day in hospital (see Hospital - Inpatient). As my last memory of her was of her sitting on my bed telling me that I might have to wait until Monday before being let out but that she hoped not, I was pleased to see her. Smiling a “good morning” I took the seat she pointed at.

Any fond memories where dispatched by her very first words.

“Your blood pressure is too high! Have you been taking your meds?”

Had she never heard of “White Coat Syndrome”?

Thinking that a simple “Good morning” would have been a much better way of starting and knowing that she was referring to that fact that five years earlier I had come off my blood pressure tablets I found myself getting defensive.

“Of course I have. I’m not stupid.”

As soon as I had said the words I knew that it would have been better if I had held my tongue. The Consultant just looked at me and moved on.

“You’ve had a massive Stroke and you are lucky to be walking and talking!’

Wow!

That went against everything that I had been told in the hospital, where I was told that my Stroke had been minor.

But the good news did not end there!

“ You’ve had numerous other strokes.” She told me in a matter of fact almost off hand way.

As I struggled to grab hold of what I had just heard I found something from my partner's past that seemed to made sense of things. Her father, who had died of dementia a few years ago, had had a number of TIA’s (Transient Ischaemic Attack), and so I asked the question. “Do you mean TIA’s?”. Maintaining her off-hand approach the Consultant dismissed my question with a simple “No”, and continued, “If they were TIA’s there would be no sign of them”.

Wow!

I did not know what she meant and told her so. In response she asked if I would like to see. Of course I said yes.

Turned her computer screen to face the open room she clicked on an icon and an image flashed into focus. Even though the monitor had been moved I still could not see clearly so got up to and stood just behind the Consultant.

The first image showed a large BLACK blob in the area that corresponded to the Central Core, which to me seemed quite large. The Consultant went on to explain that the area was black because that part of my brain was dead and would never regenerate. Then to my utter surprise she continued to flick through images that showed other BLACK SPOTS, all smaller than the first one. Due to the shock I momentarily lost the ability to take in anything but basic details so I had no idea how many there were.

The Consultant told me that there were seven or eight.

SEVEN or EIGHT?

Bloody Hell!

I don’t know how long silence reined but it felt like a lifetime.

Retaking my seat, I told the Consultant about the Headaches. In yet another example of understatement my Consultant responded by uttering the words that have perhaps defined the rest of my post strokes life.

“You get headaches with Strokes, so get used to it!”

AND THE HITS JUST KEEP ON COMING!

So I was a survivor of multiple strokes!

And I had been told this news as if the Consultant had been describing the weather for the past few days.

Moving swiftly on the Consultant told me that she was recommending an additional drug (Doxszosin) that she was sure would bring my blood pressure under control.

And then she delivered her final blow of the day by informing me that she had no prescribing rights so I would have to wait until her recommendation reached my own doctor and she would issue the drugs.

I knew that it would be at least two days before the meds would be available, which meant that I would not have them until after the holiday to the snow.

I left the Consultant’s presence in state of complete shock.

Painting the kitchen

So here I was sitting at home with nothing to do except feel sorry for myself and with my partner having gone back to work, which meant that she was away over night two times a week. With nothing to do but wait for the bi-weekly visits of the Stroke Nurse (RP) I was already feeling bored.

Just over five years ago we knocked down a not very well built and out of keeping extension at the back and side of the house and had a larger one and much better on built in its place. This gave us a much lager kitchen, as utility room, an additional lounge and an office. At the time we finished it off with white walls and ceiling, but by now the paint had started to fade to an off-white. As a result we had been talking of repainting the kitchen for months. The only thing that held us, well me, back was getting the time, with me working up to the hours a day six days a week. Well, it was all different now. After my Stroke  we agreed that I would do the painting over the next couple of weeks. Because of the size of the room 6 m (19 ft 8 in) by 5.5 m (18 ft) and with the high point of the ceiling of just over 4 m (13 ft 1 in) I needed to get hold of scaffold tower. After a bit of research I found one to hire from a tool shop in the local market town which the partner and I went and ordered it after we got back from watching England play Italy at Twickenham, after which we bought the new paint: white with a hint of apricot and orange chalk paint for one wall.

The scaffold tower was due to be delivered on the 23rd February and I would have a week before it was being picked up again. So the weekend before we set about clearing the kitchen of everything that was that’s home was not in a cupboard, including taking apart, and moving, a Welsh Dresser. When the scaffolding arrived, on the Monday, I was left on my own to put together the metal and wood tower. It would have been an interesting job even if I had been fully fit, but the way I was feeling now it became a monumental juggling act. One that I managed to complete in the short period of 5 hours, having had it almost collapse on me at least twice. That was all I could manage for the first day. I was down to taking my blood pressure only three times a day but it little sign of coming of reducing. Prior to started work it was 164/93, after finishing for the day it was 172/99 and before I went to bed it was 154/82.

On the second day I started relatively early (about ninish). This first full day with the scaffold was taken with preparing the walls. Getting rid of cobwebs, wiping down and finally filling the few cracks that had appeared over the years. As this was all I was going to be able to do that day due to having to leave time for the filler to dry I could and did take it easy, which showed in my BP readings (08:00 − 161/93, 18:00 − 158/96 and at 22:00 − 154/86).

It was only on the third day that I actually began to paint. I have never been a fan of rollers, when painting, so I set about painting the room by brush. So many people have told me that rollers are best but I really like the texture that you get with brushes. The first job was to paint the three walls and ceiling that were not going to be orange. Because we have a block and a work service protruding into the room there was a large amount of repositioning of the scaffold and even then it still involved a certain amount of reaching from the platform. I was finding I was only able to do twenty minutes or half an hour before I had to rest, sometimes for as long as a couple of hours. As I had a lot of wall to cover this was not allowing me to make much headway. (My BP readings on day three were 155/99, 184/108 and 154/92.)

Day four brought the prospect of yet more painting. As on previous days I was only able to work for a limited period before having to take a rest. What with having to manoeuvre the scaffolding and take rests progress was slow. At least my BP was holding steady, if still high (155/99, 184/108 and 154/82).

The Friday, day five, with all chance of completing the painting of the main walls and ceiling gone was much like the previous four. As is often the case when painting on to plaster it takes more than one coat. I finally finished the first layer and so began the second, which was in some ways easier added to which I was getting the hang of where to place the scaffolding but with it having to be returned on the Monday time was running out, which added a certain amount of pressure of its own.

The weekend brought little respite but fortunately I was nearing the end and by Sunday afternoon the final brush stroke was depositing its load. While the paint was drying I dismantled the scaffold.

All that was left to do was use the orange chalk paint on the on remaining wall but that could take its time.

The last week had taken its toll and so I left things as they were until the Tuesday.

When I did restart I took the rest of the week.