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.