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.

https://www.justgiving.com/fundraising/DavidSwalesIcanho