Tuesday, 23 August 2016

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

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

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

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

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

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

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

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

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

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

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

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

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


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