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.

England v Italy

Two weeks after being confirmed as having suffered a Stroke I “celebrated” my 52^rd birthday. For obvious reasons this was a birthday unlike any I had had before.

If I had not had a Stroke the partner and I would have flown out to the French Alps, on the day after I came out of hospital, to spend a week with the Step-daughter in the resort where she was working. All that went out of the window the moment that it was confirmed that I had had a Stroke (see post: Hospital - Inpatient). Under normal conditions my birthday would have been subsumed into the whole holiday thing but know plans had to be changed.

I have always been a fan of Rugby Union, both as a player and spectator and I have been fortunate (or not so fortunate) enough to have been to Twickenham to watch England play. As a birthday present my partner managed to get two tickets for England’s game against Italy in the 6 Nations at Twickenham on February 14^th, which also happened to be Valentine's Day. This year, for the first time ever, I did nothing for the day. My Stroke gave me an excuse, mainly that I had other things on my mind but also due to me not have left the village on my own since leaving hospital - mainly because I was banned from driving for a month, by law.

In an effort to make the whole trip as easy as possible we travelled down to London on the Friday afternoon, getting a lift with friends from the next village who were doing the same thing. Not having to drive or even be in the front of the car was easier than I thought, especially as there was absolutely no pressure to even take part in any of the conversations. Our friends dropped us on the outskirts of London where we could catch the Underground to where we were staying at the flat of an old work colleague  and business partner of my Partner. The flat is in West London so convenient for getting to Twickenham the next day. Even though we were away from home I still felt the need to take my blood pressure: which I took 5 times that day (at 04:00 − 172/101, at 08:00 − 181/105, at 11:00 − 160/102, at 18:00 − 173/102 and at 22:00 − 170/93). As I was feeling tired after the journey we got a take-a-way and had an early night, well relatively, just after 22:00.

The next day, not needing to be at Twickers until around 13:30 for the 14:00 kick-off, we took it really easy and had a leisurely breakfast of Croque Madame for me and Eggs Benedict for my partner and Coffee for us both in the Cote Brasserie in Turnham Green. We eventually arrived at Twickenham Underground Station at about 13:00 and joined the throng making its way to the home of English Rugby.

After the two weeks that I had had it was good to be out and doing something and getting to watch England inflict yet another heavy defeat on the Italians was something to savour, sorry any Italian readers. What I did find a little frustrating was the feeling I had of not particularly liking the crowd, which is a problem if one is attending a major sporting event. Not that the crowd was boisterous of aggressive, although this being middle class England at play there were more than a few Henrys and Ruperts who had spent a little to much time in the pubs on the route from the station to the ground. It was just that I was still feeling a little fragile. The tickets we had were in the Upper North Stand, Block U22, Row G, so behind and to the left of the posts and up in the gods, which was not a problem because there are isn’t a poor view in the 82,000 seat stadium, but what it did mean was a journey up three tires. Even taking it easily, by the time I reached to top level I was out of breath, which I found worryingly disconcerting. As we queued for a beer (dispensed in a branded plastic container, which I still have and use every day when I take my meds) my partner, not unreasonably pointed out that a lot, if not most people climbing those stairs would be a little out of breath, including her, and that I was almost back to normal which showed that I was not as bad as I thought.

The singing of the National Anthems

As kick-off approached we went to find our seats and watch the build up (see inclosed photo). As we were enjoying the entertainment one of those slightly worse for wear Henrys, seated next to my partner, insisted on talking to us. As often happens when one has imbibed a little more than one should this particular Henry found it difficult to control the level of his voice, an annoying interruption that was to continue throughout the game, which meant that the only way of avoiding the irritation was by concentrating on events the field, something which earned me a rebuke for being anti-social from my partner.

The game itself was the exciting try feast that we have come to expect from games against Italy with England running out 47 − 17 winners, although a late Italian soft try was to have a major influence on weather they won the championship or not.

With the final whistle the happy crowd began to drift away. I have always found it strange just how quickly a stadium can empty. Although my partner wanted to be away I asked if we could sit for a few minutes. I was happy but was tired. Watching England at Twickers was a thing that I had enjoyed a number of times before but this time I felt exhausted. Eventually we descended the steps and joined the remnants of the throng making its way back to the Underground / Overground Station. As we approached the station was obvious that nothing had been done over the years to speed the departure of spectators away, as evidenced by the huge queues. Even though it was only 16:00 I was fading fast so we decided to take the bus back to Chiswick, a more circuitous route but taking into account the huge crowd at the rail station considerately less stressful.

Unlike most days at that time I was only able to take my blood pressure three times (at 08:00 − 165/107, at 18:00 − 174/102 and at 22:00 − 191/99). By 22:00 I Was dead on my feet and was in bed soon afterwards.

As was the norm at that stage after my stroke I was awake at 04:00 and as was also the norm then I started taking my blood pressure and took it religiously throughout the day with five measurements (at 04:30 − 148/94, 08:00 − 163/98, at 14:30 − 163/93, at 19:30 − 177/105 and at 22:00 − 183/99). The gap between 14:30 and 19:00 was where we were watching the Scotland v Wales match in an Irish pub in North London after which we met our friends for the journey home.

My MRI Scan - What Rot!

When I slid into the claustrophobic tube that was the MRI Scanner during my short post stroke stay in hospital (see posts; MRI Scan and Hospital - Inpatient) I assumed that, not that I was thinking about at the time, that the resulting scan would form the basis of both my diagnosis and on going treatment. There was also a subliminal thought that in this day and age the scan would be instantly available to anyone with authority, all you needed access to a computer. How wrong could I have been

As I covered in my posts about my hospital stay, there was a long wait for the medical staff to “see the scan”. It’s never like that in the movies where people and their doctors get to see the scans on iPad type machines within minutes. Bearing in mind that this is a scan of my brain, such as it is, and that I was having difficulty in seeing it it felt as if there was a deliberate attempt to keep it secret. No one outside of the hospital has ever seen it or seems even to have access to it, not my GP nor the Stroke Nurse or anyone else. WHY?

When I asked my GP to see it she said that she did not have access to it and that the only for either of us to see it was to get a copy from the hospital. When I asked how one went about that she told that she did not know but that she would ask her secretary find out and let me know. Two days later a message was left on my home phone, giving a name and number of the person to talk to at the hospital.

Finally getting in contact with the lady in Patient Administration, who I will call SK, at the hospital I requested my MRI Scans only to be told that I would have to fill in the Data Protection form that she would send through. All I could do now was to wait for the postman to do his stuff.

When the form arrived it requested basic information such as my name and address and which particular records I was requesting. It also required a payment of £25.00. I duly filled in the required details and enclosed the cheque before walking across the road to drop the envelope in the village’s post box.

Almost two weeks later a small thin package from the hospital arrived, which I left on the side in the kitchen for a further couple of days. Over this two days I would glance at what was obviously a CD but didn’t touch it. The partner, who had been one of the reasons that I had requested the scan in the first place showed no interest either, which surprised me.

Then on a Sunday afternoon I decided to at least give the CD a look. With a slight feeling of trepidation, which was a bit odd as I had seen the image the CD contained before (more of that in later posts) but I think its never easy to see the inner workings of the body and especially the brain.

As I pushed the CD into the slot on the side of the laptop I had the feeling that I was going to be disappointed. The CD appeared on my desktop and when I opened it there were six files listed:
autorun.bat
autrun.inf
Content.cfs
pfmap.exe
scriptList.txt
start.bat
None of which could I open!

When, on Monday morning, I contacted SK in Patient Administration again to inform her that I was having no joy in opening the CD I was given another number, in It, to call. The young lady (LW) I spoke to was initially concerned, her attitude changed the moment I told her that I had an Apple Mac. At the word Apple she became very dismissive and told me that I should get another computer. When I told her that I had a legal right to have my records provided to me in a format that I could read her response was that it was not going to happen “ … not on a system that hardly anybody in the area uses.” When I pointed out that between 20 and 40% of people use Macs her only word was “exactly!”, and was told to go back to Patient Administration. Which I duly did! But before I did I asked for the name and telephone number of LW’s manager, which she gave me which as it happened was the same as her’s, but she said that it would do no good as she would say the same thing as her. SK in Patient Administration was very surprised and promised to look into the matter. She also agreed that it was a legal duty to get my records to me in a format that that I can read or view.

Later I phoned the Manager (NH) of the LW in IT, who I have to say was completely different to her subordinate. After a short conversation, during which I gave her my contact details, I received assurances that it would be sorted within the next week or so.

Regardless of the outcome, the point is that in this day and age can it acceptable that a national organisation such as the NHS to make a conscious decision that a common format of computer platform is not one that they will support? There are many programmes that allow graphics of all kinds to be viewed on any platform (pdf, tiff to name but two). It is a legal and moral right for everyone to have unrestricted access to their medical records, including all forms of scans. What I did not appreciate was the pompous attitude of LW from IT. Not only was she repudiating my rights, she appeared to have no understanding of what its like to view a part of your body that is dead.

It was hard enough to even load the CD never mind actually seeing what it contained and the disappointment, on a number of levels, of being denied was like a kick in the guts.

The story is not over and I await with bated breath to see how the hospital is going to take to “sort” the issue.

Stroke Nurse - First Visit

On the 5^th Feb 2015 and totally out of the blue a letter arrived from my Local Community Stroke Team.

The letter informed me that they had received a referral from the hospital that I had attended after my Stroke. Something that I was not told would happen.

The sender of the letter informed me that Local Community Stroke Team's role “ … is to offer support, explanation (sic) about the stroke, ensure you understand your risk factors and medications and monitor you (sic) blood pressure etc.” And then asked “I would be grateful if you could contact the number above to let me know if you would like my input and support: I will then try to arrange a visit to your home.”

The writer went on “I hope this letter finds you well and I look forward to hearing from you.” An interesting comment considering that I was a little over three weeks post Stroke.

The letter was signed

“Kind regards

RP

Community Stroke Associate Practitioner”

What kind of request was that?

Of course I would welcome her input.

The line about finding me well was a little strange as she knew that I had had a stroke, so how was it going to do that?

The most important thing for me was the fact that such an organisation existed came as a complete surprise: a pleasant one, but a surprise nonetheless. In fact I had every reason to believe that I would not be seeing anyone from any form of community based health organisation as on my discharge notes it clearly said that there was no need for transfer to Community Rehabilitation as well as there being no indication for a Social Service / Community Care Plan to be put in place (See: Information. What Information?, 02/03/2016).

Needless to say that I phoned the number at the top of the page very rapidly, only to have to leave a message. Having left my telephone number I had nothing left to do but wait, which lasted for two days. When RP did phone back we arranged for her to come to the house on Friday 13^th Feb at 09:00. It’s a good job that I’m not superstitious.

As the morning of the 13^th arrived and not really knowing what to expect my partner and I awaited RP’s arrival. The partner was working in the office and called down to say that a car had passed the house twice so she thought the Stroke Nurse had arrived. A fact confirmed by Bruce who barked to let us know that there was someone coming to the house. I opened the door and Bruce ran out, tail wagging, to investigate the new arrival. A pleasant looking lady in a blue nurse’s uniform and carrying a black leather bag reached down to pat Bruce and then walked up to introduce herself.

Having offered the new arrival a drink, which she declined, we settled down at the kitchen table. The first thing she asked was “How was I?” With my dissatisfaction with the treatment that I received from the medical profession during the last few hours of my time in hospital still fresh in my mind I let the frustration come following out. There was also some truth in the fact that I believed, at the back of my mind, that I had somehow brought this stroke on my self by not remaining on my meds in 2010 (See: Horner’s Syndrome, 30/03/2016) and in some way knew that I was going to get a wigging from yet another member of the medical profession, so probably tried to get my defence in first. So much so that RP had to ask me to back off, and quite rightly so. Once I had calmed down I apologised and explained where the frustration / anger had come from. As she was always going to RP explained that she was not from the acute sector and what was in the past was just that. With no option but to accept the obvious truth of her comments I suggested that we start again.

RP opened her bag and withdrew an old fashioned Blood Pressure reader and stethoscope which she placed on the table. She then dug out an A4 ring binder which she handed to me. The image on the cover was of a blue, computer generated, slightly feminine human showing the right shoulder, neck and face from the ear forwards. The title of the folder was PATIENT INFORMATION PACK. The finale thing she took from her bag was a blue CL sized folded form entitled STROKE RISK FACTOR MANAGEMENT PLAN onto which she had already written my name, address, date of stroke, type of stroke (L Pontine Infarction) and her contact details. L Pontine Infarction is the medical way of saying that I had had an obstruction to the left side of my brain which resulted in local death of the tissue. RP then took my Blood Pressure which measured 160 / 102.

We then began to talk. The first thing RP asked was what had happened, so I went through the story again (Attack, 22/11/2015) , including my time in hospital (See: Hospital - Admission, 25/11/2015.; Hospital - Inpatient, 03/12/2015; Hospital - Discharge, 07/12/2015).

At this point my partner joined us. After introductions RP went on to tell us the good news: that having had a stroke it was very unlikely that I would have another. Of course the figures supported that assertion but it was not easy to believe when you have just gone through one.

The finale subject that RP talked about on this first visit was the whole issue of Risk Factors. I should definitely stop smoking: not a problem as I have never smoked, unless you count the odd cigar after a damn good meal and at New Year. There was the usual advice to reduce the alcohol intake, lose weight, eat healthily and to reduce stress. There was a difference of opinion between my partner and I as to the degree which each of the Risk Factors impacted on me. This was a discussion that RP quite rightly refused to get involved in, but only ticked High Blood Pressure and High Cholesterol in the “Your risk factors have been identified as.” Section of the Management Plan.

With that we conformed the next visit for the morning of 19/03/15 and RP left us.

Horner's Syndrome

In 2010 I was the owner of a Riding School and had been for a couple of years. I had been working with horses for a little over a decade and running and then owning a Riding School was in many ways the natural culmination of that work. Initially I was brought in to run the Riding School, located on the outskirts of the nearest Market Town. The school had been established almost 20 years ago by the land owner but, by her own admission, she was getting tired. When I arrived there were just under one hundred clients. After six months the landowner suggested that I take on the running officially so I bought the rights to the Riding School and began to really grow the business. By the end of 2009 the active client base was up to 300 or so and we were taking new ones on at a rate of one every 2 days. Just as I was beginning to make a profit the landowner decided to sell, without telling either me or any of the liveries, some of whom had been with there through a number of horses. The new owners, when they eventually arrived, did not want the hassle of a school. So even though I still had a client base of between 300 and 400 I had to find a new venue which proved impossible so I had to close the business.

The months either side of the closure were very stressful on me and the family. I managed to keep a small number of clients, those with their own horses and as I was teaching one of these I began to feel unwell and my right eye started to weep. This carried on for a few days before my partner persuaded me to go to the doctor, who diagnosed Conjunctivitis and prescribed drops, which had absolutely no effect. I eventually developed a whole range of symptoms including: headaches right across the front of my head, behind the eyes; a cough; tiny lesions on the right half of the top of my head; a loose bowls; and strangest of all a drying and flacking of the skin on the right hand, which appeared and disappeared in as short a time as half an hour. A return visit to the doctor gave a new diagnoses of Head Shingles for which she prescribed another set of drugs.

There was a mix up with the prescription, one of the drugs came in two boxes with different designs and even two different names, and as a result I found myself taking double the dose and within two days I was being sick every few minutes with a complete inability to keep anything down, even water. By lunchtime of the second day my partner called the doctor’s and when they suggested that I come in she told them that it was impossible, so it was agreed that a doctor would come out on a home visit. It was only once my own doctor arrived around tea-time that the error with the drugs was discovered. Having sorted out the issue around the dosage I got back to what passed for normal in a day or so.

The meds to deal with the Shingles had absolutely no effect. So a few days later we were back at the doctor’s. This time I saw a locum who thought it might not be Shingles and sent me to the eye department at a hospital at a seaside town 35 miles away. The partner drove me as I was not really up to it and we had been advised that it was not good for me to be driving because the tests might prove bad for my eyesight in the short term.

As is often the case when one presents to hospital my blood pressure was taken and it was 240/100. My partner was convinced that I would be hospitalised with those measurements but I was not. After an MRI Scan and much painful digging in my tear ducts with stainless steel medical pokers the doctors were no nearer making a diagnosis. They had, however, noticed that my right upper eyelid had dropped so that it was resting just above the pupil. With symptoms ranging from headaches, a cough, a dropped eyelid and my alarmingly high blood pressure the medics were struggling to come up with any firm diagnosis so they sent me home.

A few days later I received a letter from my doctor asking me to come in for a consultation during which she admitted that she had no idea what I had. We discussed the possibility of me having either a single problem or even three or more separate ones and any combination therein. She was, however, concerned about my blood pressure and put me on a new regime of drugs.

I was 47 and being a male I was not happy at the concept of having to take drugs for the rest of my life so started agitating for the doctor to let me bring my blood pressure down by lifestyle changes. At no point was the concept of a Stroke mentioned, except in passing. There was never any form of conversation around exercise, diet, stress management. The doctor gave me a medicine to help calm the coughing and things were left at that.

Eventually I was sent to a Cough Clinic at yet another local hospital. I underwent a hole range of tests which proved that there was nothing wrong with my lungs. Then a consultant thought he had cracked it: there was a cluster of nerves in my throat which was playing up. He was ever so excited as he told me, so much so that he was bouncing up and down. He sent me for a CT Scan which he hoped would confirm his diagnosis of something he had only ever seen once before and would mean that he could perform a very rare piece of delicate surgery. When, at the my next Out Patient’s appointment, the CT results failed to show any sign of the noodle that he expected he refused to even see me and sent a minion to break the “sad news”.

But the consultant did have some interesting news, which he communicated via a letter to my doctor: he thought I had something called Horner’s Syndrome