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.