A disrupted normality

I’ve been deliberating on what to write for the SCA UK blog for some time now. I’ve written stuff and binned it, but I feel now is the time to put pen to paper, or fingers to the keyboard.

Paul and I are almost 6 years on from the fated day of his sudden cardiac arrest and I feel that for several reasons I should start to share my part of the journey.

  • I have felt and experienced things others will be going through now, and if I can normalise that for someone, I might be able to make someone else’s journey just that little bit easier.
  • The other reason is personal. I’m a great believer that we only have a capacity for so much stuff in our heads and it’s about time I allowed my poor brain to put some of this stuff down.

So here we are, my first effort.

I could start by telling you my journey, and how I came to be here, but many will know of my story, as it’s so closely intertwined with Paul’s, which many of you would have heard already.

One day, I will tell you my version, but today I want to talk about the current situation in this world of ours and how it’s making me feel, and why it compelled me to start writing this. After you’ve read it, I’d love to know if it resonates with you.

The fear of shopping

I’m normally a pretty positive, calm, down to earth person and definitely more of a glass half full, than a glass half empty. However, entering supermarkets this past few weeks has most definitely set me on edge. I can feel my anxiety levels rising, not just in the shop, but beyond.

Of course, it’s not just shopping, it’s the news too… the feeling of impending doom. 

We all know how those disaster movies end.

How can you not get caught up in it?

I think it’s the feeling of no longer understanding the world, or what this means for any of us.  Everything that used to make sense no longer does.

I’m sure I’m not alone in this.

Last week I spoke to a friend on the phone, she was due to come over (pre-lockdown) but wasn’t sure whether or not it was a good idea. We spoke about our supermarket shopping experiences and she said she felt like crying when she came out of the store, but couldn’t understand why.

Déjà vu

This got me thinking…

I’ve been here before, these thoughts, these fears, in this situation… only last time it was a whole lot worse.

Nearly 6 years ago now I had a very seemingly similar situation.

When I’d been given some more information about Paul’s condition after finding him and delivering CPR, nothing was as it was supposed to be. My world had been turned upside down. One minute I had a healthy husband, the next he was fighting for his life.  This, the person I turned to when I wasn’t sure what to do, and here he was still and seemingly lifeless in a coma. 

Would I ever get to speak to him again?

Tell him I love him?

So many things still to do together, so many things left unsaid.

I had no idea of how things would pan out, what it meant to us as a family, either financially, or physically in terms of Pauls wellbeing. The Doctors said they couldn’t promise he would even know who I was, or how his brain had been affected.

So many questions…

What to tell the children? 

How to tell his parents, his family? 

What would our future look like?

Would I have a husband, the boys a dad? 

What to think, and what to do for the best?

And I think this is why people are panicking so much in the current crisis. They are scared, they don’t fully understand the situation, and what it means for them. I can certainly relate to this. 

I know in the past I completely went into overdrive, getting a new job, signing up to loads of training courses, learning how to run a business… I needed to keep myself busy, to be doing something to protect my family… but on reflection was it the right thing to do?

For me, the difference is, we are in this one together.  Everyone has their take on the situation.  We have an understanding, of how each other are feeling.   We can talk to each other with that true understanding, of just getting it… even in isolation, we are not truly alone.

Half Full

When we come out the other side of this, and we will remember the glass half full. Each and every one of us will be changed, for going through this situation. The same as each and every one of us who has saved a life, or almost lost a loved one is changed. How can you not be changed, when the unthinkable has happened. Something that you didn’t think possible, and would not have predicted ever.

It will make us re-evaluate, what the important things are in our life. The small things that you thought were so very important, suddenly seem insignificant. The arguments about someone not doing something, just the way you want it, suddenly seem insignificant. On the grand scale of things, they just don’t matter, any more.

These days I find myself much more open-minded as to what is possible and that’s a positive. I try to achieve things now, even though I might not reach the end goal. I try not to sweat the small stuff, although sometimes it is a challenge.

I’ve seen the worse that can happen and I’m sure many of you have too.

And, of course, it will come to us all at some point. 

So, what is the take-home?

Today, I try to live my life to the full, looking for the positives, keeping my glass half full.

Trying not to sweat the small stuff and if I can help someone else along the way, I will happily do that too.

Be safe, be happy, be kind*

Tracy Swindell

*And just as an aside… being kind is proven to be as good for the giver, as it is for the receiver, as it raises oxytocin’s (listen to Dr Chatterjee’s podcast with David Hamilton)

Feature image by Prawny from Pixabay

Let’s Meet!

If you’re a member of our Facebook group (Ed: If you’re not, you should be! You’re missing out on a lot of great stuff that can help in your recovery) you may have seen a lot of talk recently surrounding the topic of meetups.

Meetups of survivors, families, lifesavers have been happening for a while now, usually arranged ad hoc through the SCA UK site. I have yet to hear anything but positive feedback from those who have attended,

Indeed, meetups were becoming so common, that we decided to set up a group to assist in coordinating, sharing good practice and learning from each other. This small group work under the banner of “SCA UK Regions”.

In case you were not aware, we now have representatives for most of the regions in the UK, so if you fancy arranging a meetup, or indeed have any queries surrounding what is happening in your region, consider dropping your local representative a private message. If they don’t know the answer I’m sure they will be able to identify someone who does.

The list of regional representatives can be found here.

Anyway, that’s not my sole reason for this article, I also want to tell you about the recent meetup that took place in Dalkeith, Mid Lothian on Saturday 18th January 2020.

How did this come about? I was contacted by Fay, a member of the group who we know from a previous meetup Fay had arranged to meet with another survivor, Scott… guess what, who we knew from a previous meet up. Fay suggested to me that we could maybe open this up to any other members of the group who fancies coming along.

Fay and Scott had agreed to meet at a Wetherspoons in Dalkeith , a place they had met before . A perfect venue, Town centre and easily accessible by bus and car. So with a location agreed and a date we just needed a time. 12:30 seemed to be a practical time of day and that’s what we set it at.

I created an event in the Events section of the SCA UK Facebook group and that was that. We very quickly got some response with several people interested or marked as going.

From my previous experience, if there are a few people going, I prefer to create a private group on Messenger. This allows people to be a bit more relaxed and have the opportunity to ask any questions they may have in a more private arena rather than on Facebook. It also encourages those intent on attending to chat about it online, it’s a really good ice breaker.

We are nearly 4 years since Susans SCA and it’s important for us to remember what a huge step it can be for survivors, as well as their families, to even think about meeting others. Through meetups arranged through Facebook, Susan and I have ridden that hurdle and have had the pleasure of meeting so many survivors and their families.

Taking that first jump can be the hardest, as with anything that is foreign to us. But it is so worthwhile. I have yet to hear any negative feedback on meeting like-minded people.

So off we went on the Saturday. We were expecting around 11 survivors and also family members in addition to this. As with everything, people may not manage to make it, for whatever reason. That’s okay though, these are informal meetups, nothing fancy and no pressure. We eventually found the pub and were met by a group of familiar, and some not so familiar, happy smiling faces.

The main, initial thing I find about meetups is how easy it is to get on with everyone. Why is that? I think I know the answer, we all have one thing in common, some could call it the Elephant in the room. Something that your friends and family know about, but are not sure whether they should talk about it. It’s different when you go to meetups. We all have driven a similar path, and have one thing in common. and that is apparent anytime I speak to a survivor or partner of a survivor. No icebreaker required. I am sure the Messenger chat before the day also assists with this.

We stayed and chatted for 3 hours or so everyone having similar, but slightly different stories. There was nine of us in total, a fine number, of varying ages and all with various stories to tell. As we connected I listened around and could hear familar things being said…

  • That’s how I feel
  • That’s what happened to me
  • I’ve never met anyone else before…
  • Have you been on holiday?
  • Do you exercise?
  • I’m scared too…

I could go on.

We all have one thing in common, and sharing experiences appears so valuable in assisting with recovery.

  • Have you got an ICD?
  • Do you have a monitor?
  • Has it gone off?
  • Was it sore?

I’m sure survivors are reading this with a wry grin on their face. All this will sound familiar. But what about family members/lifesavers…

  • Are you okay?
  • I worry about
  • Leaving them alone
  • I wake up and check they are okay
  • I get nervous when I’ve not heard from them.

If you are reading this and thinking all these questions and points are familiar, that’s because when you meet up, you are with people who “Get it”, who have experienced similar to you and who are also now living the new normal.

We said our farewells and I asked those attending to drop me a few lines on how they felt the meet up went.

Here is what they had to say:

I would like to thank all you guys whom I met for the first time last week. As an SCA survivor, it’s difficult sometimes dealing with the emotions with what we have been through. It was terrific to meet fellow survivors and spouses. This was the first time I had been to a meet and also the first time I had met anyone who had also survived. Is so glad that I did, it was terrific meeting all you guys and hearing your own individual stories and how you are recovering, also terrific to meet the partners and hear things from their perspective. All in all, it was a great meet and for anyone out there who is maybe apprehensive, then please put that behind you and get to a meet, it will inspire you and give you a great insight into others in the same boat

Chris, SCA Survivor

I jumped at the chance to attend my first meet up with fellow survivors that understand my wife is also a stroke survivor and to be able to talk to others in the same boat is a very uplifting experience, we appreciate the fact that we’re all different about how we approach what has happened to us but I would urge anyone thinking about attending a meet up to please go along x

Scott, SCA Survivor

It took me 18 months post SCA to find this group. We plucked up the courage to go to the GWR event a month later. It was a revelation for both me (the survivor) and him (my hero). We have been to every meetup that we can since -­ Edinburgh; Rutland; Newcastle upon Tyne; Dalkeith. we have made life-­long friends with folk who totally get us. Put simply GO, you will never regret it!

Fay, SCA Survivor

It was my first meet up and first time meeting other survivors. I was looking forward to it beforehand, especially as it was local. Overall a great experience and safe place to share stories as everyone can relate

Ryan, SCA Survivor

Hopefully, this will give you an insight into one of the meetups arranged by Sudden Cardiac Arrest UK members.

The group is 5 years old this year and what better way to celebrate than arranging a mass meetups, all over the country.

Put Saturday 2nd May 2020 in your diary and look out for meetups being arranged in your area of the country during the afternoon on that date. You can always click on the events tab on the top of the Facebook page and it will highlight what meetups are currently arranged, where and when.

We look forward to meeting again, on 2nd May 2020 to celebrate being amazing people, survivors, lifesavers, families and friends.

You are Not Alone!

…and some pics from other recent meetups…

Stowmarket, January 2020
Bath, Feb 2020
London, January 2020

Not Alone merchandise

We have some get merchandise in our online shop including new designs for the Not Alone event.

We have have a great event t-shirt with logos designed by Alex of Equilibrium Creative.

Go to our shop and get your order in quick if you want to wear at the event!

All our items are printed on demand by a 3rd party supplier which avoids us having to maintain expensive stock, but it does mean that some items may take a little longer to produce.

All profits raised from selling our items goes to help us run this website and put on events for survivors and their families.

Thanks for taking a look and we hope you find something you like!