Thursday 29 December 2016

Further tough times


It has been a very long time since I have posted anything in my blog. The reason I haven't posted is that I discovered that my parents found my blog and it made me feel uncomfortable that they were reading things that I didn't want them to read. I don't want them to worry too much.  I know I can't stop them reading this but I hope that they accept that this is something that helps me and is not meant to cause worry. So to pick up where I left off......

This is another quite tough post to make although I actually feel positive about its consequences.  It does describe how depression can have a cumulative impact on a person.

I had to have an echocardiogram to see if there were any obvious reasons for my stroke.  It was very interesting watching the images on the screen.  They meant nothing at all to me.  At the end of the test I was told that there were obvious signs of a stroke but that I have a heart defect.  I have a bicuspid valve. this happens when two of the three leaves of a valve fuse together.  It is quite a common defect and doesn't normally require any specific attention although it can cause problems in later life.  As a result of this I will have to have regular echocardiograms.  I will also require a small heart monitor to be inserted into my chest to check for other irregularities.  

It seems to me that what else could get thrown at me: first a stroke, then kidney stones and now a heart defect.  Whilst the most serious issue was the stroke it did seem that there was a never ending stream of issues were arising.  As the heart defect was hereditary I told my dad and asked him to let the rest of my sisters and brother know.  They could also have the defect and I wanted to make sure that they were aware so they could get themselves tested if they wished.

It was shortly after this that I had a run of four consecutive days where a series of events affected me and were difficult to deal with. 

First: someone i knew of had a stroke at about the same time as me.  Initially he was in a much worse condition than me and was in intensive care for some time.  The thing that affected me that within a few months since his stroke he was almost fully recovered whereas I felt I had made little progress.  I had permanent sight loss and there was no news of any rehab for the problems with executive function. I was pleased that he had made so much progress it was hard to accept that I had had made no significant improvement.

Second: the MP Jo Cox was murdered.  This was a terrible event that shocked the world.  I could not stop thinking about her children and that they would grow up without their mother.  The coverage was wall-to-wall and in hindsight I should have turned it off.  I didn't and the distress that this event caused was preying on my mind.

Third: the 3 month anniversary of my stroke.  I have started to consider my stroke as a different person inside of me. This new person was doing their best to bring me down and it was my job to fight it and eventually beat it. When you start dating someone there is an initial period where you remember little anniversaries, first week, first month etc.  It is like that with my stroke and I had reached another little anniversary 3 months or one quarter of a year.  Again this made me think about what had happened, how it had affected me and how little progress I had made.  

Fourth: it was my 28th wedding anniversary.  You can't help but reminisce about the person you were when you got married. 28 years ago I had a full head of hair, a happy personal life, a job that I worked hard at and enjoyed, I also had a brain that functioned properly.  Comparing that day with now, I still have a very happy personal life but I have a lot less hair, a job that I love but cannot do and a damaged brain that is struggling to recover.

So these four things on consecutive days added together made me feel very down. It really seemed that my stroke was winning.  It is difficult not to start to wallow in self pity and really get you into a bad position.  The one thing that I have always had on the positive side is Stephanie and Benjamin and Bethany.  I know that they have also struggled with my stroke both the shock and worry of the initial event but also of how how it has changed my life.  They are always with me no matter what I am doing if not physically then they are in my mind.

So I say to my stroke you will not beat me. I am a strong person and I have a lot of support that means that if I stumble they will stop me falling!!

Monday 19 September 2016

My stroke aged my brain by thirty years in a matter of moments

I haven't posted for a little while and thought it was about time that I did an update.  It's difficult to remember all the things that were happening at this time.  There were lots of appointments for various issues associated with my stroke.  The one thing I hadn't heard about was an appointment about my loss of eyesight.  I was told that I would hear from the orthoptist about an evaluation.  I decided to phone the stroke service and ask.  This is the only part of my care that fell below a high standard.  Over a couple of days I left messages on the answer machine but no response.  After a number of tries I managed to get hold of someone who said that someone would phone me back later that day.  No one phoned.  I have noticed since my stroke that I get very anxious about what people say and do.  I was starting to get stressed about this as an issue.  I phoned again and was told the same thing and there was still no phone call.  I did have to go to the hospital for a blood test so I stopped by the office.  I managed to catch my boss and mentioned that there had been no contact from the eye service.  It is the only time that I have used my employment to bypass a system. I had a phone call that day and an emergency appointment the following day.  The person apologised as I had slipped through the system and should have had the appointment a couple of weeks after the stroke.

I went to the appointment the next day and my eyesight was assessed.  It didn't tell me anything new but I was told that it was unlikely to recover the eyesight loss as the majority of improvement comes in the first couple of days. Any change beyond would be slow and marginal.  The tests undertaken would set a benchmark for future tests to be compared against.  After the orthoptist I met with the low vision coordinator who spoke to me about the various organisations that assisted with sight loss.  The one devastating news was that it was suggested that I returned my driving licence.  Although I had suspected that this was a likely outcome it still comes as a shock.  If you are a driver think about how much your life would change if you were told you can never drive again.  For me it was about a total loss of independence.  I could never just nip into town, go to get DIY supplies or take rubbish to the dump.  More dramatically it would mean reliance on others for longer trips such as visiting the children, other relatives or holiday trips.  In the past I have always done all of the longer trips.  I don't really know why but that's one of my "jobs" in the family.  I must have looked down about being told to return my driving licence as later that day I had a call from my GP's surgery enquiring after my mental health.  I was asked if I thought I might hurt myself.  My answer was emphatically no!! Although I know I was depressed I have never once considered harming myself.  I understand why I got the call and it was appreciated. 

The request to return my licence brought into sharp focus our impending holiday to America.  The planned holiday involved a significant amount of driving (almost 2,000 miles) and I was the only one who was able to drive the hire car.  Stephanie had got a great deal on car hire many months previously.  We contacted the company and they would not accept a change to the main driver as it would have to be a new contract.  It was going to cost £500 more and they would not allow Ben to drive as he was under 25.  Eventually we found a car hire company that would accept Ben as a driver but it was a lot more expensive than the previous deal.

We started to look into how our holiday insurance would be affected.  We had taken previously taken out a family annual travel policy with Barclays.  Although I anticipated that they would want an increased premium I didn't expect them to refuse to insure me.  I understand that they have to manage risk but to turn round and say no we wont insure you was a surprise.  I tried a few places and was surprised by one insurer which had a very cheap policy.  It wasn't until i saw the exclusions that I realised the reason.  There were exclusions for anything to do with stroke, diabetes or kidney stones.  I had another quote of £2,500 for just the time of our holiday.  We eventually managed to find a more reasonable policy that only cost an additional £300.

Even with the added expense there was still the question of whether I should travel anyway.  I had been advised that there was no medical reason why I should not fly.  It was always caveated with the proviso that I would have to feel up to it.  I was always told that I would have to take things easy while I was there.  After a lot of thought I decided that it was best for the family as a whole to go on the holiday.  We had been planning for it for so long to cancel now would be a very negative thing to do.  Cancelling would have been bad for my depression and would have added to the guilt that I had been feeling since my stroke.

I am not sure what else to add at this point, its not been the best of posts but it isn't always doom and gloom.  Someone did say that I should note down some of the silly things I have done since my stroke.  I will share one now.

I was on hold to speak to someone and it was taking ages.  I decided to not waste the time and started to clean out the aquarium.  Instead of putting the phone on speaker i decided to hold it with my shoulder.  I am sure you have guessed that i managed to drop the phone into the aquarium.  Whilst that was a silly thing to do it is not the point of this story.  My sister in law told Stephanie that the best thing to do was to put the phone in a plastic bag with some rice and put it in the airing cupboard.  I said I would do this and went away and sorted it out.  Go forward a couple of days and Stephanie remembered the phone and asked me to get it out of the airing cupboard.  I replied that I hadn't put it in the airing cupboard but had left it in the freezer.  Believe you me, it was totally finished off after a few days at minus twenty.  In my defence I must have got confused as I had got out a freezer bag!!

To all of you who are saying "that's the sort of thing that I do" remember you may do forgetful tings occasionally but I do it all the time.  I know that old age has an impact on memory and that as you get older forgetful things do increase.  My stroke aged my brain by thirty years in a matter of moments, that is the reality that I am facing.  The good news is that as I recover my brain will find ways to rewire itself and I will hopefully have a brain that's the same age as the rest of my body.

Wednesday 7 September 2016

Executive function and depression

I will start this blog with a picture, it's quite a positive quote, it seemed to sum up what it is like to have a stroke and to survive.  This post deals with some difficult issues and at times they appear to be an all consuming fire and unless you fight you will be swallowed up.

Life started to settle down into a regular routine of hospital, GP, rehab, walks etc.  There were a number of things that I was waiting for. One of which was a neurological assessment by a consultant psychologist.  This had been arranged and then cancelled as the psychologist was off sick.  I was concerned about the assessment as it was to look further into the problems I was having thinking.

They day came and the assessment took 4.5 hours to undertake.  After this I was totally exhausted mentally and it took several days to recover.  I found the process interesting as it used a lot of testing that was statistically based and as I had done a degree in statistics it was something I could understand.  The results of the assessment were quite distressing.  The good news was I was described as follows:
Mr Swales is a Superior-functioning individual whose verbal and non-verbal effectiveness place him between the 99th and 95th percentiles. These levels are slight underestimates.
This is a direct quote and the scoring was based on some baseline knowledge tests that did not require significant brain power to do.  The recognition of this is something that was important to me as the previous tests did not take into account my abilities before the test and certainly took no account of my age. The previous tests made me look good as I was being compared to other stroke survivors who were typically 25-30 years older than me.

The tests continued and I did some well and some badly dependent on what they were.  The tests I recall were:
Colours were written in a different colour to the word. I've the word blue was written in red ink.  I had to say the colour of the ink.  I knew that I struggled with the exercise as I took a long time and made a few errors.  When the results came back I was shocked.  I had scored in the zero percentile.  This meant that compared to the non brain injured population I would have finished bottom.
I had to name as many animals and fruit alternating between the two, I think they had to begin with certain letters as well.  Although I was accurate and switched well between the categories I didn't name enough to have a score that counted.  I.e. I was in the zero percentile.
I had to link letters and number in increasing order I.e. 1-a-2-b-3-c etc.  I knew I had done badly and the result showed this as I was in the 35th percentile.
The tower of Hanoi. When I saw this test come up I was really confident as I used to do this a lot as a child.  I decided to be methodical about the exercise as I knew that was the key.  I managed to do all of the tasks and although I knew I was slow I was pleased. Unfortunately I was a lot worse than I thought.  I was accurate and did get to the right answers I took a lot more moves and time than I was supposed to.  I was back into the zero percentile again.
I had to describe a word that was given and these increased in difficulty and became more abstract. I would get points depending on how I described the word 5 marks for a perfect answer.  An example was the word yesterday.  All I could say that it wasn't today and pointed backwards.  I got 2 marks. The correct answer was the day before today. I could not find the correct definition even though I knew what it was.  I did okay on this test but only around the 40th percentile.
There were other tests but I don't recall them.  When looking at my performance the consultant said that it was important to compare how I did compared to the baseline assessments of a superior functioning individual as this would show the level of impairment that I suffered.  It was clear from this that I had significant impairment in some areas.

The conclusion of the report was that I have a pronounced impairment of my executive function. The report stated:
Executive demands, however, reduce his efficacy from the 95th through to the 77th to the 0th percentiles for Working Memory, Verbal Fluency and Paced Mental Control/Inhibition.
Executive demands compromise Mr Swales’ effectiveness, and time pressure especially impairs it. He is highly susceptible to distraction, interference and intrusive errors. He is unable to martial his abilities, to regain and to redirect focus on the problem, and to generate a solution within prescribed time constraints.
The report also said that it could take up to a year of specialised rehabilitation before I would get back to my pre-stroke abilities.  As I haven't yet started this rehab (my rehab starts in September 2016) it is a very long time away.

The report was quite a shock and was enormously upsetting.  The psychologist also stated that I was depressed.  I had realised that I had days that were difficult emotionally but this was the first time someone described it as depression.  I have read up a lot about stroke and it is very clear that depression is a common occurrence in stroke survivors particularly those who are still of working age. 

There have been many days when things have got too much for me and it is difficult to deal with those emotions. I tried not to show these emotions too much as I am not used to being emotional in public or in private for that matter. I didn't want to show I was weak to Stephanie or the children.  

I had a GP appointment early one morning and I was in the waiting room by myself.  I was looking round the walls and seeing the illnesses and things that people suffered from.  All I could think of was that my life consisted of an endless procession of appointments, with people telling me it will all be alright. But it was simply not true. Things will never be alright, I will always have to deal with some impact of my stroke whether it was the eyesight, problems with words or thinking.  At that moment it got too much for me and I started crying in the doctors surgery. Fortunately my GP called me in at that point.  He was very good and reassuring and he was able to talk about what I was feeling.  He did prescribe anti depressants and arranged for another appointment. He also set up some counselling to help. It's hard to describe how I felt and although I had become depressed recently I started to appreciate how debilitating it can be. 

I know that i am a strong person and that the fire inside of me burns bright, but there are times when that fire dims but i know that it will not be extinguished.  I will not let my stroke ruin my life.  There is so much more I want to do - I might not know what but my stroke will not define my life. 

All my posts at the moment seem to be describing bad times.  I do have good times as well and things do get better.  However, I am sure I will get into the topic of depression again, but I will leave it for the time being.  

Saturday 3 September 2016

My wish for one day


My wish for one day:
I will wake up and not have to think what challenge I will face today
I will not have to explain why I struggle with words
I will think without my mind twisting itself inside out
I will not have to face things about my life that scare me
I will not face things in my life that make me sad
I will be able to read a book or watch a film
I will not feel guilty for not working
I will be able to return to my job and not worry about failing
I will feel confident about going for a run
I will remember the name of everyone I meet
I will be spontaneous and not plan everything I do
I will not do ridiculous things however funny
I will not worry about bumping into people and saying sorry
I will not feel so tired that the least action exhausts me
My wish for one day is that i don't know I have had a stroke.

Saturday 27 August 2016

A difficult time

This is a difficult post to make as it describes a very difficult few days.  I decided that I would run a parkrun.  It was less than a month since my stroke.  Physically I was feeling okay and thought that running would be a good step forward.  I had checked out with my GP if it was okay to run and he agreed as long as I didn't push myself too hard and stopped if I needed to.  I had arranged for someone from parkrun to be my guide both for eyesight purposes and also to slow me down to a easy pace.  We agreed that 35 minutes for 5k would be about right.

The run itself was great and I completed it in just over 34 minutes.  It was my slowest ever parkrun but it was my biggest accomplishment.  When I came into the finish area all my parkrun friends were waiting to cheer me in.  I was on cloud nine as I was back running and there were people who cared enough to wait to cheer me in.  I felt okay, a bit tired, but no ill effects at all.  I think Stephanie was relieved that I was okay and I had lots of positive comments and people saying I was brave.  I didn't feel brave as it was a simple thing to do.  In retrospect I understand why people thought that, as the last time I had run I had a stroke.

I have described this as a difficult post and so far all I have described is very positive.  The difficulty comes with the reaction to the run.  I was fine the rest of the day although I did feel quite tired.  It started to be difficult in the evening when I had a feeling of overwhelming tiredness.  I went to bed early but the fatigue got worse and worse.  It got to such a stage that I could not have cared if I woke up the next morning.  I almost expected to die that night.  It is not that I wanted to, it was just that I couldn't care.  It's a strange thing to describe having fatigue that great that you have more or less given up.  I was not unhappy or sad so it was not something relating to depression.  I would not anyone to think that I wanted to die but the feeling of fatigue was so great that it seemed inevitable that I would not wake up.

The next morning I woke up and although I was feeling a bit better I still couldn't do much because of the fatigue.  I didn't tell anyone about the previous night as there didn't seem much point as I was still alive.  The next evening the same thing happened and the fatigue got worse and worse.  This cycle repeated for three nights. I gradually felt better during the day but the nights were a real struggle.  

I really understand what it is like to have fatigue.  No disrespect to anyone who says they have fatigue but until you get to a point where you genuinely don't care whether you live or die then you don't truly understand what it's like.  I have struggled with fatigue from my diabetes but this fatigue was on a level greater than I can adequately  explain. 

I made the decision that it would be a long time before I would run a parkrun again.  I wanted to be involved as parkrun is an important part of my life.  I decided that I would volunteer as this would keep me involved but not risk getting that fatigued again.  

There have been lots of inspirational quotes that I have seen posted on the Internet.  After this experience one of the quotes I saw was the one below and has become the name of the blog.



I am determined to come through this experience so even though things may not be easy I am determined to come out of the experience a stronger person.  The battles that each of us face day by day determine the person we become.  I don't want to be known as a stroke victim I want to be defined as a stroke survivor.  Getting stronger in my inner self is the key to becoming a stronger person.  My stroke’s job is to push me backwards, on bad days the stroke is winning on good days the opposite is true and I become stronger.  At the moment the stroke is in charge and I am on the losing side, as time goes by I am confident that the better days will outweigh the bad days.  When this happens I will be winning.

Tuesday 23 August 2016

What it's like living with a stroke - part 1

This is a little jump forward in time.  I will go back to the history in my next post.

I am currently in America enjoying the delights of a Disney hotel.  It is currently 98 degrees although taking account of the humidity it feels like 107 degrees.  The hotel is air conditioned but I am sitting in the shade enjoying some peace and quiet. Stephanie, Ben and Bethany are currently in Disney Springs shopping.  One of the things I have learned to do is to make sure that I have times and days where I can totally relax.  The one thing about Disney is that there is so much to do and so much to see that forcing yourself to relax is difficult.

Looking back on the time since my stroke it is hard to believe all the things I have gone through.  The stroke is only the beginning of a journey.  The first step on the journey is surviving the stroke itself.  The remaining journey is dealing with the impacts whether physical, psychological or emotional.  Physically I am very fortunate as the stroke only affected my eyesight.  The rest of it is not so simple and some of my previous posts have highlighted these.

There are some things I have learnt  about people and how they react to me having a stroke and how they have responded.

  • Fear - there are people who know me and think how did it happen to David.  He is slim, doesn't smoke, doesn't drink much, eats a healthy diet and is a regular runner.  If he can have a stoke what will stop me from having a stroke. To these people I would say there is nothing you should fear I was just unfortunate.  However you should watch your diet and exercise more, it will help your health and you will feel better. 

  • Pity - there is no need to pity me.  I am what I am and feeling pity will not make me feel better it will just make you feel worse.  By all means be sad that this has happened but feeling pity is very negative and positivity is what I need.  Of course I regret that this has happened but I strongly believe that my stroke will help others both in terms of improving their lifestyle but will help people identify stroke by considering that the acronym FAST excludes sudden eye problems.  Remember this was the only symptom I had.


  • Kindness - without doubt whatever people thought about my stroke everyone has responded with kindness.  There are people who go out of their way to keep in contact whether through regular messages on Facebook, phone calls or taking me for walks or coffee, visiting me in hospital.  There are some very special people in these categories who have really gone out of their way to keep in contact.  They know who they are.  Even simple things like encouraging me when I did a parkrun make a difference.


  • He can walk, talk and post on the Internet so he must be better - there are people who do think that as I am active that I should be doing all of the things I used to do.  If you have ever thought that I should be back at work or doing more physical things then this applies to you.  However the chances of this group reading this blog means that they will never read this.  They are out there though.


  • Practical help - there are people who respond in a very positive way.  This is very closely linked to the kindness attribute as without this the practical side doesn't come out.  Simple things like trimming an overgrown hedge, running with me at a parkrun, taking me out for coffee all have a practical side to them.  At its purest level it makes me feel cared for.


  • Insensitive - I have had people be rude to me, mainly after bumping into them.  Maybe they don't realise the problems I have even though when I respond it is very clear that I have issues.  They are in the minority but they are there. It has made me realise how easy it is to make assumptions about someone even though they may appear to be in tip top health.  I think I have become more aware of minor disabilities and am careful to ensure that I give them all the respect they are due.  It is tough living with any impairment.

I read an article about stroke and friends.  The premise is that the vast majority of stroke survivors will lose friends.  A stroke is like a magic trick "abracadabra and some of your friends disappear".  There could be straightforward issues such as the person may be physically disabled and all their "running club friends" no longer see them so they drift apart.  However, a large number of friends disappeared because they didn't know how to respond to the stroke survivor.  The easy answer is treat me like you did before.  If i find things difficult I will tell you.

I will finish for the moment.  My next post will be a difficult post as it deals with a time when I had a deeply distressing few days. I will leave with a picture that was posted in the stroke survivors Facebook group

 

Wednesday 3 August 2016

More problems

I have not posted for a while as I have had computer problems that have yet to be resolved and I have been in holiday in America.  I am trying to get a bit of a catch up during a quiet day on holiday.

Coming to terms with what happened is a slow process.  You have a real sense of your own mortality.  I had a feeling that I dodged a bullet that day as I had lots of what if questions: 
 • What if the clot had been bigger?
 • What if the clot went furtyiher?
 • What if the stroke had happened when I was driving home?

I know I was fortunate to have so little physical disability but the mental injuries were starting to bother me.  I have always been a person who enjoys a mental challenge whether that be a quiz show on TV or a difficult problem at work.  I now struggled to think through even basic ideas.

The days now were a mix of gentle exercise (going round the block) visits from the occupational therapist and nothing.  I never thought that I would be able to cope with doing so little but I was not getting bored. My tanks were running on empty I went from hour to hour without doing anything and not caring.

About two weeks after my stroke I went to bed and started to feel unwell.  I had a sharp pain in my back.  It was incredibly painful.  Your mind really races as you start to worry about whether this was another stroke.  I called down to Stephanie but she didn't hear me as she was asleep.  I messaged her hoping that the tone would wake her. I messaged Ben to text her as the different sound might wake her, but it didn't.  In the end I had to go go downstairs even though I was in a lot of pain.  Once I was down, Stephanie went into full panic mode as she could see I was in a lot of pain. She phone the out of hours doctor who advised us to go to the GP at the hospital.

Stephanie drove there and I was in sudden severe bouts of pain.  I was seen quickly by the GP who suggested I had kidney stones.  He gave me the choice of being admitted to the hospital, wait in A&E for six hours (the new computer system E-care had just been implemented) or go home with morphine and go and see the GP the next day.  Without even thinking I wanted to go home.  I didn't wanted to be admitted and the thought of waiting in A&E for that long was was almost too much to bear. 

We walked to the car and every so often the pain came back so strongly I could hardly walk and my legs kept buckling with the severe pain.  We went home, I took the morphine and had a very uncomfortable night’s sleep.

I went to the GP the next day and he arranged for an ultrasound and prescribed a muscle relaxant.  I was taking the full dose of morphine and I did not like it at all. It made me feel so dopey and as if my head was full of sand, but the good news was that it helped with the pain.  I had the ultrasound later that day - don't anyone think that the NHS takes ages to get anything done.  My experience to date was that it was very efficient.  

I had a further GP appointment and that showed that I had passed the kidney stone.  He told me that it must have been quite a small stone.  TBelieve me that I have never known such pain from something not much bigger than a grain of sand.

Life continued with the routine of walk, rest, TV, occupational health etc.  I still wasn't doing much to exercise my brain.  I was making a lot of mistakes in sequencing (doing daily tasks out of order).  I made lots of cups of coffee without any coffee, making sandwiches in odd orders.  I put bread into the fridge, used plates back into the clean cupboard to name a few.  I was regularly bumping into people and things as a result of being careless with scanning in front of me.  This was more apparent in the house as I was more relaxed and I thought I knew where things were located. If there was a door open I would bump into it, a chair out of place then that would be easy to trip over.  I almost sent the kitchen table flying as I was being over confident and walked into it very quickly.

I did manage to do something that was quite dangerous.  I wanted to see if a hot plate was on.  Instead of looking at the oven knob I just put my hand on the hot late.  It was on!! Fortunately it was on a low setting so it wasn't too bad.  This accident showed how my brain was thinking.  If you want to find out if something was hot you touch it.  The correct thing was to look at the dial or the hot plate on light.  But to me you need to touch something to find the temperature.

I will sign off for now.



Minor update

I haven't been able to post for a while as I have been back in hospital for a suspected stroke - fortunately it wasn't.  Also I have had major computer problems and these aren't resolved.
I will not be able to post for a few weeks as I am on holiday plus the computer problems.

Tuesday 19 July 2016

Realisation

The next few days were both good and bad.  The good was that both children came home to see me.  They were not originally planning to come back but they both wanted to see me.  It was quite emotional for me as I was supposed to be the strong one of the family and here I was the weakest one.  I can't really describe fully how happy I was to see them but it was fantastic.  Even though Bethany could only stay a short time it was just so nice to spend time with her.

We didn't tell the children much about the stroke other than I had temporarily lost part of my eyesight and I was having a few problems with words.  Both of them had dissertations and exams to worry about so Stephanie and I agreed it was thing to do.  I took the same approach with my parents who are both in their eighties.  I didn't want to worry them too much.

My elder sister Cathy was great and phoned me regularly just to see how I was getting on.  I am sure she was worried but she is so calm and reassuring it helped me a lot.  

I was also inundated with cards and presents from all over the place, I don't think I have ever received so many cards.  It was lovely to read what people had said and it did help so much.

We are very fortunate to have so many good friends.  I regularly got messages from many people, particularly Diana and Kathy.  They were great as they always cheered me up.

The title of today's blog is realisation as during this time I started to learn about the problems I would be facing.  I had the speech therapist come to see me and she went through a number of tests around speech and working memory.  Although I did well at some tests I did very badly at others.  The one I can recall was that she read me a story and I had to explain what was going on.  I could not understand at all.  She read it again and once more it was not making any sense.  I found this very upsetting and that was the first time I appreciated there was more wrong than I thought.  Its hard to explain what was happening in my mind.  I was trying hard to think about what was happening but my head just filled up with nothing and my mind went really fuzzy.  It was just too difficult.  

There were also some mathematical problems that were quite straightforward but i struggled with them.  This was more apparent if the problem was put into more real life situations with multiple steps. ie a man has 8 apples and gives away a half of them but someone returned half of his etc.  I got them all right but it took a long time.  The frustrating thing about this was that this was recorded as good.  In fact the therapist said I had done the best that she had seen. AAAARRRRGGGGGGHHHHHHHHHH!!!!!!!!! With total respect to her she doesn't know me and the majority of her clients are a lot older than me.  I am an a Mathematics graduate and have been in accountancy and finance for 32 years, these type of questions I could do instantly before my stroke.  For doing so well there was no recognition of what I felt about my performance.

The whole experience was exhausting and I felt very low.  Although I didn't know at the time this was the first real sign of depression that I was experiencing.

The problem with not understanding stories made something I had experienced make sense.  I watched the first Hunger Games movie and I could not really understanding what was happening and I did not enjoy it at all.  I can remember things that happened but not why, nor could I set it in context to the rest of the film.  Some might say that this is a problem with the Hunger Games movies.  Interestingly I had no problem with films I had seen before and particularly Disney movies.  I guess that was my level at the moment.

I will sign off for now as I have tired myself out.


  

Friday 15 July 2016

The next few days

I have not posted for a few days as I have either been so tired or confused for the last few days.

I don't remember the next few days very well and i will have to rely on the posts and messages on Facebook.  I decided fairly early that I would be open about what has happened for two reason.  The first is that writing about it gave me a outlet for my feelings and the the second is that if i raise awareness about stroke and its impact then maybe it would help someone else. 

My first post made light of what happened as all I said that my chances of running in the Rio Olympics had been shattered by having a stroke. (note: for those of you don't know me this was not a realistic proposition.  I am a keen but rubbish runner).  The response to this initial post was very touching with many people expressing concern.  The most predominant response was that of shock.  How can someone who eats healthily and keep themselves fit have a stroke.  As I was mentioned on the Stroke Unit, I was the fittest person on the unit.  After the post I got lots of direct messages asking about me and again this was touching.  No matter how many people are with you stroke is a lonely place and messages and contacts are always a pleasure to receive.

People shared photos with me such as the one below:

This a photo of me with Alison and Sarah at a run we did in November 2015 in Thetford Forest.  It was great to be reminded of fun times when you are feeling low.

It was already very worrying and upsetting, although I have no physical weakness i still felt very tired and fuzzy headed.  I did believe that I would be back at work the following week.  After all the main problem I appreciated was the loss of my left field of vision.  It seems weird now that I did think I would only be off work a few days.

During this time I had a visit from the Stroke Early Discharge Team, it was okay and my initial plan for rehab was set out.  As physical therapy was not required it focused on being able to do tasks and get things in the right order.

I also contacted my GP and an appointment was arranged for the following week.  

I had my first visitor (a close family friend) and it was lovely to be able to talk with her about the challenges ahead.  She has had her own challenges and having someone who could relate to health issues was comforting and helpful.



Monday 11 July 2016

Day 2 - Diagnosis

18th April 2016

After waking up (thankfully) the day started with fear of what might happen over the next few hours.  There is nothing like a major concern over your health to make you think about how vulnerable you are.  You think you are invincible and nothing bad will ever happen.

I know that this sounds bizarre but I was almost hoping for a stroke diagnosis as the alternatives sounded so much worse.  I wasn't feeling unwell, maybe a little fuzzy and I still couldn't see to my left but other than that I felt fine.  For this reason there was even thoughts that there was nothing wrong and i would be better later that day and everything would be alright.

We had to get to the ward at 9:00 and as Stephanie goes to work at 8:00 it seemed simpler to go with her.  At least we would be able to get a parking space!! Before my MRI I went into work as things were very busy and I spent sometime doing some work on the year end accounts.  I still didn't really believe that anything was wrong.  As I knew what I needed to do I didn't have to think and did most of what I could remember.  As I was dressed casually people asked me if it was dress down day.  When I explained that I might have had a stroke they were concerned and wanted me to stop.  I did as i couldn't really think much more.

The next few hours was a bit of a whirl with loads of doctors asking me about any weakness in my limbs and how I was feeling.  I have become an expert in recognising pens as everyone waved one in front of me asking me when i could see it.  The first doctor asked me to say when I could see this.  As it was in my blindspot I naturally said "see what?"

One of the things that impressed me is that the "hellomynameis..." initiative was used throughout the hospital.  Everyone introduced themselves and it was very reassuring.  If you haven't heard of hellomynameis then you should check out the website http://hellomynameis.org.uk/ 

I eventually went down for my MRI.  One advantage of working at the hospital was that there were always friendly faces and people I knew.  Never was this more apparent than when I got to the MRI department when I was greeted by Claire who had seen i was on the list and had brought in a cd for me to listen to.  She remembered I liked ELO so I listened to their Greatest Hits during the MRI scan.  Small gestures like that mean so much when you are worried and confused. 

I was then taken to the stroke unit and taken to a quiet room where Stephanie and I waited for more information and a diagnosis.  At this point i still had no real idea what was wrong and and was still worried more about other causes than a stroke eg, tumours.  Stephanie had gone to speak to her manager and was said it was okay to spend the rest of the day with me.  Again a simple thing but it was great to have Stephanie with me all day.  The consultant Dr Azim and Javid (I cant remember his surname) came to tell me of the diagnosis.  He confirmed that I had a stroke.  Bizarre as this sounds i was relieved as I hadn't got  a tumour or other brain problem.  Thinking back now it seems strange that I thought this was the best outcome at the time.  The doctors then spent time with me explaining what had happened and where i was affected.  For the more medically minded of you.  I had infarcts in the right thalamus and right occipital lobe.  They discharged me to the Stroke Early Discharge Team and said I would have a number of follow up tests to determine the cause of my stroke.  These were an MRA, an echocardiogram, 7 day ECG and orthoptist appointment.

Before returning home I went back to the office to explain that I would not be back to work for a few days.  I genuinely believed that this was the case at the time.  I was aware that it was the busiest time of the year and I didn't want to let anyone down.

We then went home to the unknown.  We Facetimed the children and explained what was wrong.  We played down what was wrong as we didn't want to worry them too much.  

Trying to get to sleep that night was difficult, i didn't know if I would wake up the next morning.  There was lots of "why me", "Its not fair" but it always happens and stroke does not respect fitness, diet an healthy living.  I have always been fit and healthy so "its not fair" seems a reasonable response at the time.  Why did I bother with running and keeping fit.








Friday 8 July 2016

My stroke

17 April 2016 - Stroke day

As mentioned I am a keen runner and I had entered in a 10k event around Ickworth Park.  I was a nice day with plenty of sunshine although there had been loads of rain in the days leading up to the race.  I wanted to finish in under an hour as this seemed an achievable target.  The run was tough and very muddy.  I managed to fall over in the mud in a particularly slippery section.  It was not pleasant!!  The last 400m of the race was uphill and i knew I was close to the 60 minute target.  I thought it would be a good idea to run as fast as I could to get under the target.  I managed a time of 59:57 so i made my target with 3 seconds to spare.  I finished 231 out of 637 runners which was a lot better than i thought I would do.



This is me crossing the finishing line.  You can see how muddy it was from my legs!!  Although shattered at this point I was feeling okay and drove home as normal.

When I got home I was the only person in the house, after about 10 minutes (45 minutes after the race) I felt funny and then could not see anything.  It didn't go black but everything was blurred an I could not make out anything at all.  I sat down in at the kitchen table and was quite worried but after a couple of minutes my vision returned and all I could see was some blurred vision to my left.  I have had migraines in the past and I do suffer with visual problems with them.  I put the whole thing down to a very fast onset of a migraine.  When my wife (Stephanie) returned home I said nothing to her about the migraine as she tends to worry unnecessarily about health issues (she would have been right to worry on his occasion)

I promised myself that i wouldn't indulge in "what ifs" and "if only" but this will be the only occasion I will.  Many people will know that FAST is a key message for identifying stroke in others (F - Face, A - Arms, S - Speech and T - Time).  What this doesn't include is E - Eyesight. It really should be FEAST.  If only I had known that sudden vision problems / loss of eyesight was a symptom of stroke then I would have dialled 999.  The result of this would be quicker treatment and potentially a better outcome.  But I didn't so the stroke caused me a number of issues some of which could be permanent. 

Enough of the what ifs

After eating lunch and resting in the lounge I decided that the blurred vision had lasted too long and found that I couldn't see to my left.  I mentioned this to Stephanie and we phoned NHS Direct who arranged an appointment after 6pm.  We went to see the doctor and after a couple of questions referred me to the Emergency Department.  This was almost 7 hours after my stroke and much too late for any thrombolysis.  After a very short wait I underwent a number of tests including a CT scan and this didn't show anything although they said that sometimes dependent on where the stroke is this may happen.  I was sent home with an appointment for an MRI the next day.  

We were told that the MRI would show if there was a stroke and recall asking what if it didn't show a stroke.  The message was that there was something causing the blindness and this would require further investigation and they could not rule out a tumour or other growths.

The rest of the evening was a bit of a blur and I don't remember too much.  We had told the children (when in A&E) that I might have had a stroke, so when we got home we Facetimed them just to show them I was okay.  Bethany was quite upset and this was quite tough to face.  Ben did not show he was upset (he is a cool dude) although he was shocked at the news.  We made light of the situation with the children although I cannot recall being more scared and worried.  

I think we both had a terrible nights sleep and we shed tears as whatever was happening was not a good thing.  I didn't know if I was going to wake up the next morning and believe me that makes you stay awake as long as possible.

Here endeth day 1 of my stroke life.  Words to summarize are: scared, confused but thankful for being alive.

About me and my reasons for the blog

I have started this blog following a suggestion from someone who thought I would benefit from having a project to focus on.  I will be honest about what I have gone through and what i am facing.  I hope it will be informative and hopefully entertaining.  If it helps others understand some of the issues that stroke survivors face then it will have achieved something.  I am not a great writer or thinker, i am just an ordinary person facing a challenge I never expected to deal with.  The first few posts will be catching you up on me and my stroke journey so far.

My name is David Swales I live in Bury St Edmunds in beautiful Suffolk.  I am happily married for 28 years and counting.  I have a lovely wife Stephanie and two wonderful children Ben and Bethany.  I am very blessed to have such a wonderful family and love them all.

I work in the NHS as an accountant.  I have worked for the NHS for 23 years but with my current employer for 8 years.

I am a 53 year old type 2 diabetic and as a result lead a healthy lifestyle.  I am not overweight, I have never smoked and don't drink a great deal. I am a keen runner although not an athlete.  I run parkruns most weeks and do 5 km in a personal best of 26:27.  I enjoy running 10k and have ran a half marathon along a beach and then up a mountain.  

I know this is all dull and boring but it sets the context for the blog.