A difficult time

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

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

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

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

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

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

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

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

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

 

More problems

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

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

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

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

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

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

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

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

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

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

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

I will sign off for now.

Minor update

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