Post by Willem Pretorius

My story begins on the 26^th of March 2017 when I decided to go for another run as I have done over the last few years. It does end up very differently as whilst I was out running I suffered what is known as a sudden cardiac arrest.  I don’t have any memory of the event, just stories I was told by many people.

This single event has changed my life in so many ways – many of my fellow survivors can probably agree with this.

Since my cardiac arrest I have been at home recovering – I have spent so many hours on the sofa watching TV. Trying to make sense of life and trying to find a way back to normality.     Fatigue, brain fog, memory difficulty, personality changes is all part of the new me.

I tried to return to work in February 2018 –  with in my view, disastrous results. It became very clear that 1) My company really did not know how to cater for my needs.  2)  My boss who Is also a close friend had no understanding of what I could and could not do.  3)  My two hours of work was costing me 2 days of recovery.   All of this led me to get myself signed off again as this was not sustainable.

I had been in contact with my insurance company about a return to work – after this failed attempt they requested that I meet up with an occupational therapist to see if they could help me to get back to work.  I was at first concerned that they were going to push me back to work no matter what – but I can honestly say that is not my experience so far.

How did we start?

I had a home visit by one of the lead occupational therapist to review and see where I was in relationship to return to work.   We had a two hour conversation about me ( for those who know me that is not a problem as I like a good chat)

The result of this was a very detailed report that was sent to my insurance company and to my work showing that I was not in any way prepared for a return to work and they suggested a 3 months intensive occupational therapy engagement to try and help me get strategies around some of the issues that I face with a view of helping me get back to work.

Session 1

The first session was again just a discovery session with the new occupational therapist.   She had seen the report but wanted to hear my side of the report.

We spent some time putting together a “goals list”  for us to work on and to give me something to aim at.  Some of the items on the list were

• Helping me manage my fatigue better
• Helping to cope/get rid of the brain fog that we all know so well
• Improving my interaction with people – getting rid of my black and white way of viewing everything
• Etc

This session was a bit emotional for me as we also discussed how I got to where I am right now.

Session 2

Gloves off session as far as I am concerned.   Today the hard work starts on getting my brain back into action.

My lovely occupational therapist spent the first 10 minutes or so just recalling what we had spoken about before handing me a sheet of paper to work on

Task 1

The first sheet consists of about 9 sentences all mixed up.  My task is to read the sentences and try and make a story out of it.  This sounds easy , but there is no real chronological clues as to how this should look – and from what I was told after – no real correct answer.

It takes me a good ten minutes to read the lines – try and figure it out – and then put them roughly into the story.    Jo (my occupational therapist) says I did good and gives me 4/5 for the task – Rock and roll.

Task 2

Similar to task one – BUT – this time Jo asks me to put the TV on – and to push the volume up to a lot more than I would normally have the TV on.    I struggle with sound sensitivity and light sensitivity so this immediately puts a new spin on the exercise.

This time the exercise has ten sentences – but the idea is the same – make a story with them. This time it is harder as I have the TV blaring in the background and the constant flashing of lights pulls my attention away.  I decide to not allow it to distract me too much and crack on with it.

Jo is pleased with my attempt and again gives me 4/5 for the work done. She said that having the TV on does make it much harder and she seems pleased that I managed to focus on the task and not getting too distracted by the surrounding

Task 3

Here comes the tricky one. Jo hands me a piece of paper. It has the alphabet arranged in a circle.  At the bottom of the paper is a load of numbers. She tells me that I will need to use the alphabetical circle to decipher the numbers and to put the sentence together -EASY I think – but no – the ordering of the numbers change so not as simple as I thought.

Off we go…   I start and decipher the first 10 words or so pretty easily. Jo – not being happy with this puts down her phone, puts on a timer and tells me to count from one to ten every time the timers gets to a minute.

Here I am now sat having to count the numbers to figure out which letter I need to put on the sentence – while also keeping an eye on the timer – and then remembering to count when it gets to a minute – and ooh yeah – there is no reminder of the instructions….

After 20 minutes of doing this I am pretty exhausted – but being me I crack on till jo says – “you are allowed to stop and rest if you are fatigued”   Big sigh of relief!!    I stop for about 5 minutes  -do some relaxed breathing and then continue.

By the end of the session I am thoroughly knackered but Jo seems pleased with the work that I had done and gives me some positive feedback..

Looking forward to the third session in two weeks….

Session 3 – Fatigue

The old enemy. I have had lots of issues around fatigue. It has been my nemesis since my cardiac arrest and have also spent many many hours talking to NHS staff about how to manage it.

What I have realised is that I am my own worst enemy.  I come from a very busy background so having to stop myself from doing things because I am tired does not come naturally to me.

During the session Jo gave me a sheet to fill in to gauge how I handle fatigue and also to see what my awareness of it is.  I guess after 15 months of struggling with it I am luckily now much better at dealing with it.   We worked out that I am generally pretty aware of it and that the coping mechanisms I have put in place are working better now.

We discussed the things that affect my fagitue – things that cause it , things that make it worse and better.   All of this we wrote down on a sheet as a reminder for me

I asked her the poignant question – will the fatigue ever go away?    She gave me the answer that I was expecting – that we would have to manage the fatigue in the future – there was no guarantee that it would ever go away 100%

Now on to my homework for the week – a Fatigue diary. Just need to remember to do it on a daily basis.

Session 4

Further Fatigue work –  we went through my fatigue diary.  I think I am handling my fatigue a lot better and have been given more strategies to do this.

We did a few exercises where Jo reads out a paragraph to me and I have to take notes. She then asks me to highlight the important facts of the paragraph.  This has variant levels of success.. Definitely affected by me being tired and getting more tired as we go along with the excercises..

And this is the point where I must admit   – not having made these notes on the day and trying to rely on my memory is a bad thing – sorry folks but the above is all I could put together from memory!

Session 5

This week we worked on memory.  This is something that I am very worried about as my memory can be very iffy at the moment.

We started the session by Jo talking me through the different types of memory:

• Episodic memory – memory for events
• Prospective memory – remembering to do things in the future
• Semantic memory – memory for facts
• Working memory – Holding information in your mind and using it
• Procedural memory – Memory for skills and movement

She also talked me through how memories are formed and stored into long term memory

We again did some exercise where she read a article to me and then I need to answer a set of questions on this. It is fairly clear that my recollection of facts is pretty bad

At the end of the session we discuss my future.  I again ask the hard question – will I ever get back to being normal/me?    I think this is where Jo gives me the hard facts – this always gets me as there is always a small part of me that hopes I will be able to be the old me again.  The worry around being able to work, relationship break up etc is a big problem for me at the moment – but I am trying to deal with it all

Next week is our 6^th session – half way through the agreed 12 sessions.   I am feeling much stronger cognitively, but I think emotionally I am still a bit of a wreck…

For the past few years Southend Hospital and local paper Evening Echo have had an award for a patient nominated Hospital Hero – “This is for an individual or team who consistently demonstrate high quality clinical care, with compassion”.  SCA UK Group member, Charlie Dickens is a patient at the hospital and had an idea for a nomination and we agree, and maybe you too?…

Why I’ll be nominating Dr Tom Keeble (Cardiologist) for an NHS Hospital Hero Award, and why I hope you’ll join me & nominate him too! I consider myself very lucky to have Dr Keeble as my cardiologist, and I know others in SCA UK feel the same.

Following 4 cardiac arrests, caused by a heart attack, I first met Dr Keeble when I was in hospital. He has a fantastic bed side manner, takes time at appointments to listen and assess, and goes out of his way to be available to his patients. He demonstrates an understanding of how we feel, the overwhelming trials that we survivors face psychologically and emotionally as well as physically. I trust him, and feel safe in his care, and for me that’s top of my list of wants about a Dr.

This group has proven to me that not all care is the same, many feel that they were ‘on their own’ on discharge from hospital, leaving with more questions than answers, and feeling very alone. I got to thinking about the NHS Hospital Hero Awards, and all the work that Dr Keeble has done for our group.

How he aims to develop aftercare for SCA survivors across the country. His work in developing and championing a Gold Standard. His recognition of the massive raft of issues experienced by survivors, will hopefully help to change the way we are treated now & in the future, consistently across the UK.

Dr Keeble, has not only been there for his own patients, but via 2 evening Webinars, made himself accessible to all survivors and families on the SCA UK group, answering questions and giving advice. For some it was clear it was the first opportunity they’d had to ask questions, and talk about the issues they’d faced in the wake of surviving death!

He has presented at conferences and forums, showing his passion for improving how survivors are supported in the aftermath of SCA. Most recently was his instrumental involvement in bringing together 127 individuals from across the country for a Guinness World Record attempt for the largest gathering of SCA survivors. A day which was full of emotion and joy for so many, as they got to meet people who also ‘get it’ & to share an overwhelming experience. Dr Keeble was there, volunteering, presenting, promoting the Gold standard, talking to survivors and their families and his passion is so obvious!

So my reason for this ramble is this! We all know that dying is actually the easy bit – surviving is much harder. Dr Tom Keeble is not just my Cardiologist. He has proved that he is working tirelessly for all of us, and for survivors who will go through ‘the system’ in the future. He is working to provide the support that will make surviving easier!

Please nominate and vote for Dr Tom Keeble as our NHS Hospital Hero – he deserves it!

Charlotte (Charlie) Dickens

You can read more about the award at the Southend Hospital Heroes 2018 webpage.  The 3 top nominations will be put forward to the public vote, so we need to make sure he’s one of the top three!

To make nominating him a little easier we’ve created a Hospital Heroes 2018 Nomination Form which all you have to do is fill in the fields – most are obvious, name and contact details. the last field “YOUR_REASON” is the reason why you are nominating him. Maximum words for this fields is 250*.   To submit the nomination click the “Merge Document” button and that’s it!

Closing date is 5pm Monday July 30th!

*If you want to write a little bit we suggest you type it in another app first (notepad etc) and then copy & paste as there’s not much room to view what you’re typing