Saturday, 20 January 2018

London Marathon Livability reception

It's not often that I write a blog post so quickly after something that has happened but this week I did something that I never thought I would do again.  I spoke in public!!  Before my stroke I have spoken in public on quite a few occasions but having had the stoke I never thought I would have the confidence to do it. Also I never know what sort of day I will have with my aphasia.  Sometimes I am a bumbling idiot but other days I am quite fluent.  I never know which me will turn up on any particular day.  

I had an email from Livability (this is the charity that runs Icanho - my rehabilitation centre) and they asked if I would like to talk at a reception for their London Marathon runners.  It was a tough decision for me.  I really wanted to do it but I had a real fear of making a fool of myself.  For people who suffer with aphasia this is a constant feeling we face every day.  You always try to speak the best you can but sometimes it just doesn't work.  For me in my mind I generally know what I want to say but just cannot work out how to get the thoughts converted into words.  I also want to find the perfect word but sometimes I just can't find it.  You cannot understand how frustrating I find this.  The other thing that affects my aphasia is stress .  When I am under pressure the words just start to fail me and the more it happens the worse it gets.  So standing up and talking to strangers is something I would find stressful.  In some ways it would have been easy to say that I wouldnt do it.  After all if I didnt do it I could have a lazy Thursday evening at home.  On the face of it it is an easy choice to make.  

One of the many things that my stroke has taught me is that sometimes you have to push yourself beyond where you thought possible.  So even though it would have been easy to turn this opportunity down it was something where I could tell my stroke once again that it hasnt beaten me.  The main positive of doing the talk was that I could tell people about the wonderful things that Livability and Icanho do. So I decided that I would do it although I wasnt sure how I would get there as I didnt want Stephanie to take a day off work.  I was not really thinking straight as the event was on a Thursday and this was her day off.  I emailed Livability and let them know that I would do it. I immediately thought that I should retract as the implication of what I had agreed to do dawned on me!!

I thought quite a lot about what I would say and came up with a plan of my speech.  I quickly decided that I would write out exactly what I would say and try and remember as much as possible.  With a script at least if I stumbled with my speaking I could read what was written.  I was even prepared to read what I had written word for word.  If my aphasia was bad then I would not have had an option but to read it all.  That would still be tough to do if it was a really bad day.

Writing what I wanted to say was tougher than I thought.  When I started to write it I was having a bad cognitive day and it was a real struggle.  I persevered and eventually came up with a draft.  It took a few more more attempts to get a version that I was comfortable with.  Now came the difficult bit to try and a commit as much to memory as possible. To a non brain injured person this would be a challenge but to a stroke survivor it was like climbing everest.  It was a massive problem for me as I did want to do well but couldnt really hope to remember the majority of the speech.  I practised and practised.  I am sure Stephanie was fed up with me speaking the speech out loud but this was the only way I stood a chance of remembering it.  

On the morning of the talk I woke up wondering what sort of cognitive day I would have.  It wasnt perfect but it wasnt terrible.  I practised in the morning before I went to work and it was probably one of the worst attempts and I had to refer to the script constantly.  It was probably nerves kicking in I was so nervous!!

We left for London at about 3 oclock; it was probably a little early but there had been problems with the roads earlier in the day.  As it turned out we had no problems at all, we arrived at the Livability offices an hour early!!!  We were welcomed by Fabian who had been emailing me and he was very welcoming and put me at ease.  I was hoping to have another run through of my speech but I didnt get the opportunity.  We were then introduced to Lisa who was the compere for the evening.  Again we were made to feel very welcome.  We also met the other people who were taking part, both of whom were running the marathon.

It was soon 6:30 the time had flown past and I was feeling nervous as we went into the area where the reception was taking place.  The room had an amazing view right across to the docklands skyscrapers.  It was a great venue and was well laid out. I got the opportunity to talk to quite a few people who worked at Livability and some of the runners.  There were probably over 30 people there so it wasnt too bad.

The evening started with Lisa telling everyone about the work that Livability do.  It was great to hear about all of the things that they were doing that was helping a wide range of people.  Lisa also told everyone about her experience running the London Marathon a few years previously.  She spoke really well and without notes; how I wished she had a script.  I didnt want to be the only person to read out what they said.  

There was then a speaker (I think his name was Simon, but I am not really sure) who spoke about training for a marathon and his experience of running the marathon the previous year. Once again he spoke without a script, it would mean that I would be the only one reading from a script.  The pressure was mounting and I started to feel nervous. 

He finished talking and so it was my turn to talk.  I stood up and took a deep breath and began.  There are some times in life where you find some inner strength, I dont know where it comes from but it just happens.  Fortunately it happened to me there and then.  I spoke and I wasnt struggling with words much (only a few times).  I had my script but I didnt rely on it.  I think the practising I had done paid off.  I did refer to it on a few occasions but generally it was only there for a few anchor points when I needed to be sure of the next section.  I went off script quite a lot but it was not uncontrolled; it just flowed out of me.  I was not nervous and I was looking at the audience and they seemed to be hanging on to my every word.  It felt so good, much better than I thought possible.  I had timed my speech and it should have taken 10 minutes, it went so well that I was probably talking for about 18 minutes and it wasnt because I was struggling at all; I was flying and soaring.  People laughed at the right places and really seemed to enjoy it.  When I finished everyone clapped - I had done it, I had spoken in public.  I even answered a few questions from the audience.  I found that quite easy as I think I was flying high on adrenaline.  
Me with Ralph and Francesca at the Livability London Marathon reception

After I had finished I felt a great wave of relief.  There was then time for me to chat with a few of the amazing runners and encourage them.  I was surprised at how much people said they enjoyed it and they found it inspirational. I have always said that I am not inspirational and haven't set out to be.  All I am is a person who has a bad thing happen and all I do is I deal with it in the best way I can.  If it serves as inspiration to others then that is a happy consequence.

Having spent the evening with some wonderful runners I found it inspiring.  These people from all walks of life will train for months, they will make massive sacrifices to do their training and they will then punish their bodies by running over 26 miles for charity.  As I said all I have done is deal with my stroke but these people are the inspirational ones they will do this race and between them they will raise over £250,000 for Livabilty.  This is truly inspirational.  To all of you I want to say thank you on behalf of all of the people who this money will benefit you are absolutely amazing.

If any of you running the London Marathon want to get in contact. I will promise to encourage you as best as I can.  My twitter name is @rowellswales so tweet me.  You can also email me on

I will finish this blog post with the final quote from my speech.  Run when you can, walk if you must, crawl if you have to, just never give up.  To all the runners in the London Marathon I wish you every success in your training and for the race itself.  For fellow stroke survivors I hope that this blog post will help you achieve your marathon whatever that might be.

Saturday, 25 November 2017

Awards are like buses, you wait for ages and then three turn up at the same time

You go through life without any real idea of the impact that you leave as you make your way in the world.  I have said on a number of occasions that I am nothing special; I will never be remembered as a famous celebrity, an amazing businessman, a great writer or a top class sportsman.  All I am is an ordinary person, husband and father.  The only thing that distinguishes me from most of the people I meet is that I had a stroke and they haven't.  Whilst this is not unique, there are many stroke survivors in this country, it is the thing that has had the single biggest impact on my life.  Since my stroke I have tried to be the best person I could be.  I haven't let the stroke defeat me and all I am trying to do is live the best life that I could possibly live.

In my life I have never won much other than the odd pub quiz and the occasional game of football.  So to win an award was something I never really considered.  The first award was at the West Suffolk Sports Awards.  I was nominated for the Triumph over Adversity Award by my wife.  I didn't really expect much to come of it as like I said I am nothing special.  It was a great surprise when I received an email to say that I was shortlisted for the award and was invited to the award ceremony at St Edmundsbury Cathedral.  They asked me if i would like to invite anyone to attend.  The obvious choice was my wife and as I knew my children wouldn't be able to attend the only other people I wanted to share the evening were two of my therapists from Icanho.  It's almost impossible to thank everyone from Icanho enough.  Yes I had raised £2,500 for them but sharing the awards evening was something else I could do to say how much I appreciated their help.

A couple of weeks before the ceremony there was another email explaining that the nominees for all of the awards were entered into the Peoples Choice award.  This was awarded on the basis of a public vote on Facebook.  Votes opened on Friday morning and would run until Sunday at midnight.

When I got the email on the Friday evening I looked at the vote and I had received a few votes but there were people who had over 70 votes.  I thought that it wouldn't hurt to put a post on my Facebook page and tweet about it.  Although not expecting much I checked how the voting was going on Saturday afternoon.  I was quite shocked to see that i had received over 100 votes and that I was just in the lead.  It was great to see who had voted and many people were my friends but there were just as many who I didn't know.  I was amazed that so many people had voted for me.  By Sunday afternoon the votes had slowly grown and I was still in the lead but it was getting closer.  I took the opportunity to re-post to Facebook.  In the end by midnight on Sunday night I was 20 votes in front.  I had won the Peoples Champion award.  Winning an award that was voted for by the general public was amazing.  

The Triumph Over Adversity Award
A few weeks later it was the West Suffolk Sports Awards and there was a gathering of the great and the good of the West Suffolk sporting scene.  The four of us enjoyed the hospitality at the cathedral.  We were on a great table with an amazing triathlete and a coach both of whom won their respective categories.  The first award that I was nominated for was the Triumph Over Adversity award.  I didn't really expect to win; I knew one of the other nominees and really thought what he had been through with cancer and his contribution to the local athletics would mean he would easily win.  It was a real shock when my name was announced as the winner.  My heart was almost beating out of my chest, it was a great feeling.  I looked round the table and everyone on the table was smiling, cheering and clapping.  It was a special moment hearing the audience clapping and cheering as I went up to collect the award.  I collected the award and was congratulated by the award presenter and had my photo taken.  I returned to my seat and on the way back a person got up from a table and came over to shake my hand.  It was all very surreal.

The Peoples Champion Award
A few awards later it was the Peoples Champion award, although I knew that I had already won the award it was still a great feeling going up to collect it.  The rest of the evening went past quickly and at the end of the evening I had my photo taken with Sally Gunnell.  Sally is one of my running heroes and hearing her talk earlier in the evening made me appreciate how much top athletes sacrifice to get to the top of their sport, truly amazing.

I have been very privileged to be involved with Bury St Edmunds Junior parkrun.  I have always thought that if you take part in an event that is run by volunteers you should be a volunteer on a regular basis.  I have been running at the main parkrun for a couple of years and used to volunteer on occasions.  However, since my stroke I have had to rely on others to drive me to parkrun so I don't like to make people hang round after they have finished.  For that reason I decided that I would volunteer at the junior parkrun which is only a short walk from my home.  I have loved being part of the team there and have made some good friends.  They are special group of people who like me think it is important to give back to the community; without people like this the community would not be the same.  The two leaders of the parkrun Steve and Hannah give a lot to the event and their passion for the event has made it such a great success.  You are probably wondering why I have made this diversion away from the topic.  The event was chosen to be put forward for a Peoples Choice Project award at the Suffolk Sports Awards.  This was open to a public vote across the whole of Suffolk.  For me it was a no brainer (I'm allowed to say that as part of my brain is missing!!) but it still had to be voted for and I was totally delighted when it won the award.  There were cameras at a parkrun to record a showcase about the event, this was to be shown at the awards.  

A little while after the recording I got an email from Steve asking if Stephanie and me to join the rest of the junior parkrun team.  I was surprised to be asked as there are so many great volunteers who take part regularly.  It was great to be asked to share in an evening where another award was to be given.  I had no hesitation in accepting the invite.  

We now have to jump forwards in time to the day of the awards.  I woke up and I was so fuzzy that i could not talk properly, it was one of my worst speaking days since my stroke.  Although disappointed I felt I had no choice but to cry off the awards ceremony.  I think Stephanie was relieved as it was quite a journey to the ceremony and she would have to drive. I emailed Steve to tell him and hoped that he could find someone to take our places.  I went to work even though I wasn't feeling great but in the end I had to go home.  Stephanie took me home and suggested that I should rest and maybe I would feel better and would be able to go.  She told me that Steve had messaged her to see whether I was likely to feel better as they would like me to go if possible as I was an important part of parkrun.  I slept for three or four hours and I confess that I did feel a lot better afterwards.  I probably wouldn't have gone except that Stephanie thought I would enjoy it and that junior parkrun was important for me.  She also thought that I would love see them be awarded the trophy.  We did decide to go in the end.

The awards were held in a posh hotel on the outskirts of Ipswich.  The room looked very beautiful with lots of starry lights in the ceiling.  It was a great venue and the food was lovely too.  The Junior parkrun award was later in the ceremony so there was plenty of time to listen to all of the awards.  All of the awards were given to some great people and there were many deserving awards.  The time came for the Elena Baltacha award.  Elena was the British number one British tennis player but tragically died from liver cancer in May 2014.  She was an inspirational person and her legacy lives on through her foundation.  Please read more about her on her Wikipedia page 

The award is given to a person who shows the positive outcome and difference that sports can make on someone's life.  The award was presented by Elena's husband Nino Severino.  He began the nomination "The winner of this year’s award is truly deserving of this award and is an inspiration to all showing how sport can not only aid recovery from a major health problem, but can help others.  At just 53 years old he suffered a stroke whilst racing to the finish line during the Ickworth Park 10k race in 2016 that would change his life.... 

Nino Severino presenting the Elena Baltacha Award
At this point it dawned on me that he was telling my story. I could not believe it. I had no expectation of winning an award and here was someone on stage talking about all of the things I had gone through and how I had dealt with my problems.  All of the people on the parkrun tables had realised that they were talking about me and the looks on their faces was astonishment.  I am sure I looked equally astonished.  Listening to Nino tell my story made me realise for the first time that I had achieved something that many others couldn't.  I have never thought of my self as anything other an ordinary person dealing with a bad hand that life dealt me.  Here was someone describing me and I thought if it hadn't been me I would have been in awe of what this person had achieved.  It genuinely brought a tear to my eye.  The nomination continued for a little while and at the end I was invited onto the stage to accept the Elena Baltacha Award.  Nino presented me the award and he spoke to me in glowing terms and that I had achieved something amazing and I should be proud of what I had achieved.  I told him that accepting the award named in honour of his wife was incredibly humbling.  We turned towards the audience for the official photo and I could not help notice people standing, clapping and cheering - particularly all my friends on the parkrun tables.  It was an incredible feeling listening and witnessing the audience reaction, I was on cloud 9. 
A picture of me with the award

If you want to see the whole speech plus me receiving the award just click on the link below.

So is this post telling you how great I think I am.  No it's not.  Am I proud of what I have achieved? Yes of course I am.  I haven't done this to boast about things, I have done this to tell stroke survivors that you all have the opportunity to be a success.  I am fortunate in that I am fully mobile (my problems are cognitive, vision and memory related).  You have to find your own Everest to climb.  For me running was that challenge, after all my stroke happened after a race. Stroke survivors must celebrate every success however insignificant others may think them.  Your Everest could be walking down the street, it could be doing a crossword or even feeding your self unaided.  The trophies I won are for all stroke survivors you are all amazing and you need to tell yourself that every day.  Your body tried its best to kill you but you survived.  To paraphrase a quote "The stroke whispered in my ear, “You’re not strong enough to withstand the storm.” Today I whispered in the strokes ear, “I am the storm.”

Friday, 11 August 2017

Running the Wimpole Hall 10k

Benjamin, Bethany and me before the race
From earlier blog posts you will have found out that I had my stroke after running the Ickworth Park 10k which was organised by Hoohah. One of the goals I set myself at the start of rehabilitation with Icanho was that I would run a 10k race at the same event but a year later.  Unfortunately they did not organise one at Ickworth Park so I had to do the next best thing and run a different Hoohah race as close to the anniversary of my stroke. The one that fitted the bill was the Wimpole Hall 10k race organised by Hoohah.

There didn't seem much point in just running a race for the sake of it. It seemed a small leap to turn it into something a lot more positive, so I decided to fund raise for my rehabilitation centre, Icanho.  I contacted them and they were delighted that I was doing this for them, they even supplied running shirts that had Livability branding. (Icanho is part of the Livability charity). 

I have previously posted about running after a stroke but it does seem sensible to restate some of the issues that I face whilst running.  Most people who see me would not know that I have had a stroke; I walk without a problem and I can run.  What these people don't know is the struggles that I face when I run.  The first one is my vision, I cannot see anything to the left or low down.  If I am not vigilant then I will not see anything coming from my left whether it is a car coming out of a drive or people out for a walk. What is worse is that I cannot see where my feet are going to land without looking down. Eyesight is amazing, fully sighted people have a horizontal vision range of 210 degrees and a vertical vision range of 150 degrees. So in theory we do have a bit of vision in the back of our heads.  I have lost about 40% of my vision field and this is a significant problem when running. If I am running then I have to concentrate the whole time, I cant just switch off and let the yards and miles go past.  I have to be careful about whats around me. More importantly I have to concentrate where my feet are landing as i cannot see them.  Fully sighted people when they run they can see their feet all the time although you don't realise it.  If I am on rough terrain or even on some of our dilapidated pavements and roads then I need to make sure that I don't stumble or fall.  So far while running I have never fallen although i have stumbled many times. This tends to happen when I get tired during a run.  I get lazy and assume I know where my feet are landing and then that's when things go wrong. 

You would probably think that my vision is the biggest problem I face while running, but it isn't.  The biggest problem i have running relates to my cognitive issues. As mentioned earlier I have to concentrate the whole time to make sure I am safe.  To most people this wouldn't be a major problem but to me it is.  I have to concentrate to make sure I don't trip, to avoid other people and to make sure I am running a sensible pace. If I dont run sensibly then this will cause me severe cognitive problems. I will explain later how this can affect me. 

Now onto the race. I was very happy that my children Benjamin and Bethany decided to join my fundraising effort.  I shouldn't really call them children as they are both grown up and living in different parts of London.  Stephanie was chief cheerleader.  We got to Wimpole Hall early as I wanted to have a chat with the organisers as they had been very kind to promote my fundraising and had been in contact with me a few times after my stroke.  It was nice to meet them in person, they also introduced me to the official starters of the race, all of them had suffered a brain injury either through a stroke or traumatic brain injury.  It was nice to know that there would be others cheering me on the way.

After doing a warm up we were ready to go. Ben was going to try and run quickly he is a lot fitter (and younger) than me. Bethany decided to run with me, its not that she isn't fit but she wanted to run with me, which was appreciated.  The start of a race is a stressful time for me as people are jostling for position and for space. People will change direction right in front of you without warning. That's fine but if you are partially sighted then it's a nightmare.  Bethany ran on my blind side (left) this is the best side although I didn't see her at all during the race. Running on my blind side means that she protects me to an extent from people swerving from my blind side.

Once we got clear of the initial crush we settled into a reasonably quick pace.  I wanted to run about 58 minutes for the 10k as that would be a tough target but my real aim was to finish in a faster time than when I had my stroke (59:57).  Just after a mile we were faced with the main hill of the race. It was about 170 feet and was under a mile to make the climb.  Most of the climb was in the first third of a mile. To set that in context 170 feet is the equivalent of a 17 storey building.  The hill was a bit of a killer and that slowed us down considerably.  

The race was mainly on rough farm tracks at this point which is difficult for me cognitively as I need to be careful of my footing.  During the middle part of the race we were keeping a decent pace and were comfortably on for the target time.  After 3.5 miles there was another hill and although it wasn't as severe as the first one it slowed us right down as Bethany developed a stitch.  Mind you I was grateful for the rest as I was starting to struggle.  The track at this point was through woods and was quite rough. As I mentioned earlier when I am tired I start to struggle cognitively.  It was at this point that I started to have cognitive problems.  As the terrain was uneven for the majority of the race I had used up all my reserves of mental strength. I started to babble incoherently, I was talking in a made up language and I had no control over it.  I know this worried Bethany as she had never heard this before. I managed to put a thumbs up indicating I was okay.  I could tell that she was concerned but I was okay physically.  We continued for a little while and fortunately the path turned into grass paths through fields and was much easier terrain for me to negotiate. For this reason I began to recover my cognitive function and I was able to talk to Bethany in English.  She was relieved.  

Finishing the race
At this point we were probably only a mile from the finish and looking at my watch I realised that we could still make under the hour which was my realistic target.  Although the remainder of the race was a gentle uphill we managed to increase our pace.  Running towards the finishing line was great as there were plenty of people cheering in runners including the chief Cheerleader Stephanie and Ben who had finished 10 minutes before us.  Bethany and I held hands over the finish line and we finished in exactly 59:00.  So over a year had passed since my stroke and I finished a trail 10k race 57 seconds quicker than when I had my stroke.  

After finishing I felt very tired (the after effects of my cognitive problem was still an issue) but absolutely elated on having completed the race.  I was proud of Benjamin and Bethany for running and supporting me before and during the race.

The local paper printed an article about my race and it was also on their website.

Whilst part of doing the race was to tell my stroke that I wasn't beaten and that it would not stop me from achieving goals, the main purpose was to raise money for Icanho.  At the time of writing the amount we raised is £2200 which was vastly in excess of what I thought we would raise.  I am proud of this achievement and I know that it will make a difference, however small, to other brain injury survivors.  You can still donate to Icanho by following this link.

Monday, 24 April 2017

You can learn a lot about being a stroke survivor from the Star Wars movies

I saw a post on Twitter about a runner that related quotes from the Star Wars franchise to his running experiences. I thought it was a great idea so I have shamelessly copied the idea (and many of the quotes) and applied the same idea to stroke survivors.

So here goes with my version of things that Star Wars can be applied to living with stroke.

1) “Try not. Do or do not. There is no try.” – Yoda. If something is important to you will focus your efforts toward that aim until you succeed. Just saying you will try there is an implication that you are not putting your full heart into it. Although for stroke survivors sometimes all we can do is try. I am not convinced Yoda is right with this quote but it is probably one of the most memorable quotes so couldn't ignore it.

2) "There are always two. A Master and an Apprentice." – Yoda. We should never stop learning. Whether it's learning about our stroke or about how to cope with its impact we can always learn from others. Remember one day you will the apprentice and the next you will be the master.

3) Embrace being a Master (stroke survivor) - Yoda. Our strokes are probably the single most life changing event in our lives but it does not define us. We need to recognise that being a stroke survivor is important in our lives but we should embrace the fact that we survived. 

4) "Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering." - Yoda. I am sure we have all been scared at times since our strokes. Sometimes if you are having a bad stroke day then fear can rear its ugly head. Focusing on fear will become a problem as it will start to dominate your life. A physiological reaction to a fear is fight or flight and it is the fight aspect that this quote refers to. When the fight response happens we can emotionally hurt people who are close to us. Sometimes its easy to hit out at our loved ones when we are fearful and it's at these times we should be leaning on our loved ones.

5) “Don’t underestimate the power of the Force”- Darth Vader. Believe in yourself. You can accomplish so much more with confidence then you can with negative thoughts. Whether you are a person of faith or not, having a positive outlook on life will help pull you through some of the tough times.

6) “Great kid! Don’t get cocky”- Han Solo. We are all experts on our own strokes but know little about everyone else's even if we think we do. When you have seen one stroke, you have seen one stroke. Do not put others down, instead build them up. I see many posts on forums when people get angry and frustrated with peoples responses. It is easy to get dragged in to the discussion and then everyone has there own opinion and it goes downhill from there. It then gets to the situation as noted in 4 above.

7) “I have a bad feeling about this.” Numerous Characters. Our bodies are wonderful things and they are the greatest gift we have ever been given. Sometimes things go wrong and stroke survivors know this to our cost. Every stroke survivors experience of their stroke is different. I am sure there are many of us who could have used this quote while we were having our stroke or shortly thereafter. Although for me this quote only became reality about 4 hours after my stroke when I realised I still couldn't see to my left and it was not an ordinary migraine as I had originally thought.

8) “In my experience there is no such thing as luck.”- Obi Wan Kenobi. Do not attribute your successes or failures to luck. Stroke survivors work so hard on their recovery. To people who don't live in my head you can't even imagine the effort it takes for me to appear normal. It isn't luck, it's very hard work and is exhausting. I do not make light of my effort and I do not make excuses for a lack of it.

10) “It’s a trap!” - Admiral Ackbar. You cannot avoid the choices you make, at some point the bad decisions will catch up on you. For a long time I blamed myself for my stroke. I put myself under pressure by taking on more and more work and never asking for help. At some point something had to give and it was at that point I had my stroke. I am sure the reasons for my stroke are far more complex but sometimes your life choices put you into the trap and sooner or later that trap will spring shut.

11) “Is that possible?” -Rey to Han Solo.
“I never ask that question until after we’ve done it.” –Han Solo in response. Never sell yourself short and do not be afraid to try new things.

12) “Always pass on what you have learned.” - Yoda to Luke As a stroke survivor I love to share my knowledge and help others if I can. I am very conscious that everyone's stroke and experience of a stroke is different but if I can help someone I will. Fortunately there are many stroke survivors who share this view and I am grateful for their experience. I also think that its important to share my experience with non stroke survivors. I am amazed at how little people know about stroke. I was one of the people who knew so little before my stroke. I didn't recognise the symptoms when it happened to me mainly because I only knew about FAST and not that sight problems were also a symptom in up to two thirds of strokes.

13) “Your focus determines your reality.”-Qui-Gon Jinn.
As a stroke survivor it's important for me to be rigorous in keeping my mind set on the goals I have set. Whether its running a 10k race in under an hour or completing a task at work. Whatever happens, the more focused I am will determine a better outcome and will be my reality.

14) “I find your lack of faith disturbing.” - Darth Vader.
If you don’t believe in yourself who will?

15) “Be brave and don’t look back. Don’t look back.”-Shmi Skywalker. When you have faced so much in surviving a stroke it is absolutely essential to be brave. To then have the further strength to not look back at what you were or what actually happened takes extraordinary bravery. As stroke survivors we must look to the future to become the best person we possibly can and that is a tough thing to aim for.

16) “Never tell me the odds.”-Han Solo. After having my stroke the first thing I did was to do a bit of research and found that 30% of people who have a stroke die within a year. The problem with statistics is that context is all important. As stroke is still predominately aged related the 30% mainly consists of elderly stroke survivors. That doesn't make it any better but for a younger survivor the basic statistic is scary. I do know that my life expectancy has decreased but that doesn't mean I will die any earlier but the is greater chance that I will. So not looking at the odds is something that we should be aware of but don't stress out too much. I plan to be around for a long time to come.

17) “Patience you must have my young padawan.”- Yoda. Recovering from a stroke is a long and difficult struggle. Little bits of progress can easily be overshadowed by setbacks. Being patient, however tough it might be, is essential for our emotional and mental health.

18) "Be mindful of the future, but not at the expense of the moment." Qui-Gon Jinn. It's easy to just be focused on the future and previous paragraphs stress the importance of thinking about the future. Slavishly focusing on the future and not enjoying the successes that we have means we will not appreciate the progress that has been made.

19) “Would it help if I got out and pushed?”- Princess Leia to Han Solo. Sometimes we all need that person helping to push us on those tough days. Being a stroke survivor can be very lonely no matter how many close friends and family we have. Having people around to give us that bit of help is important no matter how self sufficient we want to be. We do need to appreciate the times when we need that little push.

20) “Stay on target,”- Gold Five. Stay focused on your goals, as a stroke survivor I need to have things to aim for as it gives me things to target but it also gives something to measure success against. How do I know I'm getting better if I don't have a standard to measure against.

21) “This is a new day, a new beginning.”- Ahsoka Tano. Had a bad stroke day or bad experience? Tomorrow is a new day. Move on and let it go. This is tough to do as our future is quite often forged by the experiences of our past. What is important that we move on from bad experiences.

22) “Nothing will stand in our way.”-Kylo Ren. Refuse to be held back. Do all you can to reach your goals. As a stroke survivor we have to deal with problems and emotions that other people can hardly imagine. So we must be determined to progress and make our recovery happen.

23) “Be careful not to choke on your aspirations”-Darth Vader in Rogue One. Do not get tunnel vision where all your focus is on yourself at the expense of family and your loved ones. It is easy to be so caught up in our own stroke lives that we forget that the people in our lives have their own worries and problems. We might be one of those worries so make sure that we spend time considering the needs of others and not just ourselves.

24) “You don’t have to do this to impress me.” - Princess Leia. Sometimes even stroke survivors have things to celebrate when we do something for the first time or solve a problem. Trust me when I tell you all about it I am not trying to impress you I am sharing a breakthrough or something that is important. I want to celebrate.

25) “Yeah… you’re a real hero.” - Han Solo. This is said with a big dollop of sarcasm, but as stroke survivor we should consider ourselves as heroes. We have survived a life threatening illness and have been left with disabilities yet we still continue to live and try our best to live life to the fullest. So we are heroes every single one of us.

26) “We seem to be made to suffer. It’s our lot in life.” C-3PO. At times, in our darkest moments, it is natural to feelings like this. People don't understand how hard it is living with the impacts of a stroke. To look at me you would not know that I had a stroke and many people will assume that things are not that bad. Trust me, being inside the brain of a stroke survivor is not an easy place to be. I don't believe that this quote should be something that stroke survivors should believe, we are strong and have to overcome the struggles that we face.

27) "Many of the truths that we cling to depend on our point of view." Obi-Wan Kenobi. Being a stroke survivor I find it important to hold onto certain principles about my new life. For me they are important but others don't understand why it is important. For example people don't understand why I want to run races again after having my stroke after one. After all it would be easy to stop but to me its that I won't let the stroke beat me and running gives me that power over the stroke.

28) "The Force is strong with this one." - Darth Vader. Never underestimate a stroke survivor, they survived a life threatening illness. The strength within us is strong and we will continue to fight. 

29) "Sometimes we must let go of our pride and do what is requested of us." - Padme. Since my stroke I have definitely become more stubborn and don't like being told not to do something if the person doesn't think I should do it. Sometimes we do have to listen to that person as they may be right. An example: It was suggested that I didn't run a particular race as I was having a very bad stroke day. I really wanted to run as I felt that not running was letting my stroke win that day. However, I did see sense and did not run, whilst I was disappointed deep down I knew it was the right decision.

I am sure there are many other quotes I could have used. I would be interested on other peoples thoughts on their favourite quotes. I hope you have enjoyed this post, it was definitely not my normal type of post.

Monday, 17 April 2017

My first stroke annivesary

Today (17 April 2017) is an important day, it's a day that most stroke survivors have feelings about, some will celebrate, some will mourn and others will treat it as just another day. It is exactly a year since my stroke. It's hard to know what to think about it. Should I be happy that it is a year since I came closest to dying but survived. Should I mourn the loss of so many things that were part of me yet have now gone or should it just be another day that I get through trying the best I can be with the challenges I face.

I think it is a combination of the first two and dependent on what I am thinking about one or other becomes the dominant thought.

What have I got to celebrate. Well the first thing is I am currently alive and kicking. If things had been different on that day the outcome and my recovery could have been vastly different. I was fortunate that the clot that went to my brain damaged only two places. The first place was the right occipital lobe, this controls eyesight to the left. The damage is irreparable and no matter how much my brain rewires itself I will always have lost 40% of my vision field. Even with this there is something to be positive about. I still have 60% of my vision field. I can still see sunrises, sunsets, beautiful scenery, people and so many other wonderful things to be seen. Okay I have to turn my head from side to side to see the full glory of this world but that's not a big deal is it? The second place it damaged was the thalamus. This is located just above the brain stem and although the damage was slight it has had the biggest impact. The damage has resulted in aphasia (speech problems), cognitive problems, memory and attention issues. Although these are the things that bother me the most it still could have been worse. Thalamic strokes can be catastrophic causing significant disability or even death.  So just for medical reasons I have reasons to celebrate.

Yet there is even more to celebrate. I have a wonderful family and although I have never doubted their love for me, when you face major health issues they play such an important part in recovery. Whether it is just looking after me, cheering me up when I am down, giving me a huggle or taking me away for a short break in Wales, it is something I will always be grateful for and is well worth celebrating.

So what right do I have to mourn. Well mourning is feeling sadness or regret for the loss of something, so yes absolutely I have a right to mourn. I have lost so many things that are important. I have listed some of them above so I wont repeat them. In summing things up what do I mourn; the main thing is my old self. Many of you who know me will see that there are many things that are still there and most of these are quite superficial. I still can have a laugh and a joke, I still know a lot of useful facts. Those of you who know me well see the struggles that I face day by day and how things affect me. Forgetting to put a coffee capsule in the coffee machine may seem trivial but if I forget to take my tablets or leave home without a front door key then it is a lot more important. For me all these are things that the old me would never do, so the new me gets frustrated with myself easily for relatively trivial things.  It is at specific times that the sense of loss is felt more acutely for example:
my birthday another year goes past and not sufficient progress in my recovery, my wedding anniversary I am not the same person who got married, Christmas is a time for lively family times but because of my cognitive problems I find I have to retreat into a shell as this helps insulate me from sensory overload. I now have to experience the anniversary of my stroke when all of the feeling and memories of that time come flooding back. So I honestly believe I have a right to mourn the loss of the old me. Don't mistake this for feeling sorry for myself, this feeling passed a long time go.

The final thing that people think about their stroke anniversary is that it's just another day. Yes the day still has 24 hours each containing 60 minutes of 60 seconds. So in that sense it is just another day. I will wake up the same as always, I will have breakfast and then go about the normal business of the day whatever that might be. It is not just another day though, it is a day that I will remember when my life changed and not for the better. I will never get back to the person who existed before then. It's not that I don't like the new me but the old me had less worries and never had to wake up wondering whether it was going to be a good or bad stroke day.  If you haven't got fed up reading this far I will ask you a question. Do you ever wake up and think "I am well and all is fine?" The answer is probably rarely. Well every morning I wake up and I don't think that. Every day I wake up and know that I have had a stroke and sometimes it is hard to cope with. I genuinely hope that tomorrow morning you wake up and think "I am well and everything is fine"

So for me its both a celebration of what is important in my life tinged with mourning for the lost me. To sum up my feelings on the first anniversary of my stroke I wish I hadn't had a stroke but sometimes you get dealt a hand of cards and you are stuck with them no matter how hard you want a new deal. 

Some very kind people have described me as inspirational for writing this blog or for continuing running but I don't think I am. All I am is an ordinary middle aged man, trying to live an ordinary middle aged life in the best way I can.

If you have managed to get to the end of this long blog post then well done I hope you enjoyed it. Happy first stroke anniversary to me. May there be many more to come!!

Thursday, 13 April 2017

Running after a stroke

Many of you will know that I am a keen runner. I am not a great runner and have no aspirations to be nothing more than a keen plodder with the occasional race thrown in for good measure. 

I started running when I decided that I needed to get serious about my health. I had been a diabetic for a few years and originally was told to use diet and exercise to control it. I was pretty good at the diet bit, but other than the occasional walk, I never did much exercise. There was no specific incident that got me started I guess i just thought it would be a good idea. It was an evening in February 2015 when I first put on my trainers and ventured out for a run. I always thought that even though I hadn't done much exercise i was in good shape. I was totally wrong. I couldn't even run to the end of my road before having to slow to a walk. I don't know how far I ran that evening but it was less than a mile.  I could have easily given up that day, I was cold, tired and fed up that I wasn't as fit as I thought. I didn't give up though. The one thing that most people know about me is I am not a quitter. I carried on trying to go out a few times a week gradually increasing the distance I was running. Running in the evening around the estate where we live wasn't enthralling and I was starting to find my enthusiasm waning. 

There were two things that were instrumental in me becoming a more serious runner.  The first was that I decided to run the North Wales Half Marathon and raise money for Diabetes UK and the Diabetes service at my local hospital. It was great that my sister and her family also entered raising money for Diabetes as well. Having an event to train for kept me on the straight and narrow. I started to increase the frequency and distance I was running. I find that to keep me focused I need a target and the half marathon was just the thing to keep me running. 

I always finished parkrun with a sprint
The second thing was that I found parkrun. I don't recall how I heard about it but I decided to give it a go. Again I thought that running with others would keep me focused. I went to my first parkrun in early May 2015. Straight away I knew that this was an event I really could get involved with. Everyone was very friendly and it was nice to see people that I knew from work and from previous jobs. When I first got there I expected everyone to be a lot quicker and fitter than me but I was wrong there were people of all abilities and fitness levels. I did not feel the slightest bit out of place. Parkrun became part of my normal week. If I wasn't able to run I missed it. If I was injured then I used to volunteer and that was just as enjoyable. If you are a runner at any level and are finding things tough going then give parkrun a go. 

By the time the half marathon arrived in July 2015 I felt quite prepared but nothing quite prepared me for what the run entailed. I knew that it was a tough run but that's what I wanted. After all if you are going to raise money you have to push yourself; it has to be more than a walk in the park. The run started on the beach in Conway. The first 1.2 miles was along the beach it was firm sand as the tide had only just gone out. The route then went along the prom until mile 5 and after then it went up a mountain for 3.5 miles. The route dropped down back into Conway. The last 1.2 miles were back along the beach, by now the sand was soft. So after almost 12 miles of hard running there was the torture of running through soft sand. To add to the struggle I had a hypoglycemic attack (low sugar) around mile 11 when I had to stop and eat a sugar snack to boost my sugars to a safe level. The total climb during the race was 1,740 feet which is over  one and half times the height of the Shard. I finished the run in 2:26 it was slower than I wanted but I was proud of what we had all achieved. My nephews and niece all finished well ahead of my and my sister and brother in law finished shortly after me. the biggest achievement that between us we had raised over £2,000 for diabetes research and diabetes services. 

Having met the challenge of the half marathon I had definitely got the running bug and continued to run at least a few times a week. I also joined my local running club, the Saint Edmunds Pacers. Again this was another way to keep myself motivated particularly when the nights drew in and the weather worsened.

Coming in to 2016 I decided that I need to set a few more challenges and booked up for a number of races. These were the ones I entered:

  • The Suffolk Cross Country Championship
  • Ickworth Park - Suffolk Trail Runners event
  • The Tarpley 10 mile race - a local event organised by my running club
  • Ickworth Park 10k organised by Hoohah
  • Thurston 10k run 
  • Flaming June half marathon.

It turned out I only ran the first four of these events before I had my stroke. 

The Suffolk Cross Championship was the muddiest race I have ever run in. There were parts where the mud was almost to your knees. the good news was that I was the 147th quickest cross country runner in Suffolk, I try and ignore the fact that I was fourth last to finish. I did enjoy the run but made a mental note not to run it again.

The Tarpley 10 was a road race through villages just outside Bury St Edmunds. I finished 262 out of 304 a result that I was very pleased with. I was a lovely day for running and i broke my 10 mile PB by over 5 minutes.

Mud, mud, glorious mud
The most significant race in my life happened on 17 April 2016. It was the Ickworth Park 10k. It was part of the Hoohah race series. The previous week there had been a significant amount of rain and we were warned that the course was very muddy in parts. The day itself was a lovely spring day and the sun was out although it was not too hot. I set myself the target of completing the race in under an hour. I thought that this was a reasonable target as although I could run 10k in under the hour given the conditions and that there were a number of steep hills (they were steep for East Anglia). The first part of the race was fairly easy with a gentle downhill section on a hard country track. I felt very good and confident about the pace I was running. Once the bottom of the hill was reached the ground became quite muddy and it became a task trying to spot a firm route through the mud. Again I was running well and kept a good pace but at a slower rate. I was passing more people than were passing me and this always make you feel good. Once we got the wooded section the mud became very bad and footing was difficult and it definitely slowed everyone down. At about 8km I lost my footing in the mud and fell quite hard onto my side into the mud. Fortunately wasn't too bad but you could clearly tell that I had fallen over. The rest of the run I had comments about falling over in the mud, they were encouraging though. 

Crossing the finish line 30-40 minutes before my stroke
The last 1.3 km of the race were uphill along the park roads. I looked at my watch and realised that I was not going to be under 1 hour unless I speed up considerably. I don't like not achieving my goals so I gradually sped up and then put my foot down for the last 400m. I ran this at a pace of 6.4 minute mile pace and managed to finish the race in 59:57. I hit my target with 3 seconds to spare and finished in 252 place out of 633. I confess that I knew I had pushed too hard as I wanted to be sick. However I wasn't but did have to lie down and recover. It was great to chat with other runners after the race although I decided to drive back home as I was feeling very tired. 

My muddy legs a couple of minutes before my stroke
After I got home I wasn't feeling great and after about 30 minutes I had my stroke. The only symptom I had was that I suddenly went blind and after a few minutes my vision appeared to come back (I didn't notice that I was missing 40% of my eyesight though). I didn't know I had a stroke I just thought I had a very sudden migraine. I thought a stroke was indicated by FAST (Face drooping, Arms limp, Speech slurred and Time) I didn't know that Balance and Eyesight problems are present in more than 50% of strokes. I am now an advocate of BE-FAST for recognising stroke. If you learn one thing from this blog remember BE-FAST it could save the life of you or someone you love. Although my stroke happened after a race there must have been underlying reasons for the clot to be there (I still don't know what those reasons are). What I do know is the over exertion in that race caused the clot somewhere in my body to shear off and travel to my brain where it caused irreparable harm. I won't go into anymore details of this time, you can read it in earlier blog posts.

Since my stroke running is just as important in life as it was before. Exercise is something that is recommended for all stroke survivors. The only thing I am very conscious of while running is over exerting myself. I find this incredibly hard, I ask you who doesn't speed up towards the end of a race to get that one place closer to the front or knock that extra second off a PB. 

Also when I run its like a sword of Damocles hanging over me. Will I have another stroke if I run that bit faster. The thought of another stroke is always at the forefront of my mind when running and not just in a race, even in training runs it is always there somewhere in my mind. People have said that I am brave for running after having a stroke after a race.  I am not brave, to me its another thing I have to beat its not another runner but something that tried to kill me but failed. I am not going let it beat me or stop me doing something I love.

I will finish with this long and rambling post with a shameless plug for the 10k I am running to raise money for my stroke rehabilitation service Icanho (part of livability). Please donate if you can, it may not be local to you but the work they do is essential and worth while.  Follow the link below or you can text DRSW53 £10 to 70070. Please don't feel constrained by donating £10 you can donate any amount you would like, obviously the greater the amount the more use it can be put to.