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The Night It Happened…

I woke up on the floor, arms outstretched, it felt as if Ryan was waking me from a deep sleep, for a moment I thought I was in bed being woken to see to the kids!!

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Have you ever sat on the sofa eating dinner and watching TV?

Yup, that was me and the next minute I was in cardiac arrest. I woke up on the floor, arms outstretched, it felt as if Ryan was waking me from a deep sleep. For a moment I thought I was in bed being woken to see to the kids!! Then I realised my vision was blurred. I was on the living room floor. Ryan was on the phone shouting my name and asking if I was OK. I felt drunk responding in a fog. Then the paramedics arrived and suddenly I realised there was a problem.  I felt heavy. They sat me up and did some checks and an ECG.  They looked at it and then rechecked the lines, and looked again. They hadn’t seen this before… once Ryan had changed me (I hadn’t even realised I’d wet myself from having the seizure) I was loaded into the ambulance. I felt so sick, but they were so lovely and reassuring. I’m sure I was waffling rubbish! I felt very sleepy… once in the ambulance, the paramedic rang Bristol and sent my ECG over. He was very honest, saying “I’ve not seen this before, so I want to check if we need to go straight to Bristol or Gloucester”. Luckily they said that as I had no chest pain Gloucester was OK…

Being admitted to the cardiac ward

There was no real explanation as to what had happened and what was wrong with me, but suddenly I realised that they weren’t going to be sending me straight home.  In fact, it was quite the opposite. Their medical interests had pricked up and they even asked if they could keep a copy of my ECG for their students to study. I felt like saying, “maybe someone can start explaining it to me first!?” But of course I  didn’t. Now I think how amazing it is that my ECG may teach another doctor how to spot the signs of brugada syndrome.

I was taken to the ward, a ‘unisex’ ward that was all men! Oh the joys… it’s now late at night so they were all snoring and farting!! Enough to send me insane… Ryan’s not even allowed to breath loudly near me!

So Ryan was sent home. I was left all alone in my cubicle behind the curtain… what the hell has happened? Things like this don’t happen to me… my babies were going to wake up and I wasn’t going to be there. The questions will start and we don’t even have the answers. I was in shock. Too frightened to sleep. I just lay there for hours and hours….

I can’t quite remember when, but the doctor came round and broke the news that they believed I had brugada syndrome. I lay there numb, I had what…??  I sent messages to family and started to google NHS website… brugada syndrome aka sudden death in adults…

shit.

Taking Mum guilt to a whole new level… (Written for The Cheltenham Maman)

It’s now been 11 weeks since the night I had a seizure. Completely out of the blue. After eating a roast dinner. Just sitting on the sofa. I was quickly diagnosed with Brugada Syndrome (also known as Sudden Death Syndrome) and spent 10 days in hospital wired up to a monitor 24 hours a day, before having a defibrillator (S-ICD) fitted. One night really can change everything.
Over the last few weeks it’s taken time for all this information to sink in. I’ve read websites and searched hash tags to find other people, but have found it hard to see just normal answers, either in plain English or to the little questions about how to live with this and how to deal with the overwhelming feelings. The feeling of thankfulness for still being here; that chance to have another go at life… some call it luck, fate or God, it doesn’t matter which, but just knowing it could have all be over in a heartbeat (quite literally) is tough to get your head around.

So a little bit about me… My name is Sally, I’m 30 and have three beautiful children Finn 8, Darcy 5, Edie 2 and the biggest kid of all my fiancé Ryan. I live a very normal day to day life as a full time mum and self employed hairdresser. We’re also in the middle of very slowly doing up our house. Nothing out of the ordinary there! So the reason for writing (or attempting to at least) is to help work through my own emotions and the thought that sharing a few honest feelings might hopefully help someone else going through this.

It was just this summer that I was diagnosed with Brugada Syndrome, anyone who watches Eastenders will maybe now have heard of this thanks to their current cardiac story line. Strange how the universe collides! This rare and relatively unheard of syndrome is on the flippin’ TV just a few weeks after I first hear about it. I’ve since learnt that twelve young people a week die from cardiac conditions. So, Eastenders’ story line is great for bringing some awareness to a rare heart condition in the young, even if it’s a little unrealistic! But as my other half likes to remind me, it is Eastenders after all!

I hadn’t experienced any previous symptoms of this genetic condition, so to suddenly go into cardiac arrest was a bit of a shock to say the least. Even more so for my fiancé.

Following my stay in hospital and the operation, I’m now faced with not just getting back to life physically, but with the mental challenges that this diagnosis brings. The better I feel the less I can sleep. I’m beyond tired, yet I just lie there thinking; going over and over everything that’s happened playing it over like a video. The condition is genetic, so I worry for my three children. The Guilt that I may have passed this on seems to be growing at a rapid rate. The fear of the unknown and yet some how knowing that everything can change out of the blue. We have been so lucky already – can I really be lucky enough to have 3 healthy children? I mean I always thought I was beyond lucky to have 3 healthy babies, but now to know they’re safe and that they won’t get taken from me early is a my main worry.

Mum guilt now has a whole new meaning. Not just the beige dinners, iPad entertainment and that general feeling of not doing enough for them. The guilt that I could have passed on a hereditary gene that causes sudden death, well there aren’t any words that can really truly describe that gut wrenching feeling. I’m supposed to protect them and keep them safe. To know there’s nothing, absolutely nothing, I can now do to change the outcome leaves me in turmoil.
Of course they may not have the gene, but in the mean time the ‘what if’s’ are always are at the forefront of my mind with everything I do.
Taking a bath, “what if I pass out now?”.
Crossing the road, “what if?”.
Driving, “what if?”.
Being alone, “what if?”.
Tucking them into bed at night and thinking, “what if…?”

For me, I now have procedures in place. My defibrillator is essentially like walking around with my own paramedic ready to kick start me should I need it. It’s placed under the skin on my left side with wires that run up my chest to sit over my heart ready and waiting. It’s always reading my heart trace and reporting back too should my heart go haywire again! But my babies don’t a defibrillator fitted and although this condition is usually in ages 30 + I’ve read about and heard of much younger occurrences. We are currently waiting for genetic testing for not just my children, but my parents and sister too. The doctors have tried to reassure me that the children aren’t at risk yet, should they carry the gene, but even if diagnosed in their teenage years I’ll still always see them as my babies and I don’t see this reassurance as a conciliation, just merely prolonging the results. The condition is said to be more common in males, which clearly I’m not! So I just can’t help thinking… Thinking seems to be my biggest battle.

The thought that I was so nearly robbed of life with my family, in the blink of an eye, with no chance to say goodbye. Watching them play, watching them just being, is all the more sweeter and I take a moment longer to really appreciate them in their all.

Until bam! There’s that mum guilt again, when they are doing my head in by endlessly saying they’re hungry and asking why, fighting each other, not to mention the mess… oh the mess, in every blimin’ room. Hang on – I should be more grateful right? Or is this just normal life in it’s all, surly you can’t change day to day living, but you can take a moment longer to smile and appreciate, before exploding! Maybe to think “really, is it that bad? Do I care that much?”. Surly there’s more important things, but equally it would be unrealistic to walk around 100% happy all the time (because yes, squeezing the tooth paste in the middle of the tube really does annoy me!!!).

Since this significant life changing moment I can’t help feel I want to move forward and do something positive to reflect my journey not just as me, but as a mum too. I’m yet to work it out, so for now raising awareness of this rare genetic syndrome may be enough.
The charity Cardiac Risk In the Young – CRY  works to raise awareness. I have written a more detailed account of my journey in a blog -Fittingintomynewgenes.wordpress.com

Fate…

So I found this diary entry from over a year ago and reading it back makes me reflect and think…

So why do I find myself feeling at a loss with myself, when I have everything I’ve ever wanted?? Well I think I’ve realised maybe it’s because I met Ryan when I was 18! We had Finn, I was 23 then Darcy at 26 then Edie at 28 phew… So then all of a sudden I find myself at 30 and wondering who the hell I am?! I have always always wanted to have the dream, husband, house, babies and guess what I have it! How lucky am I? But I have spent all my time being a mum and although I’ll always be that and I wouldn’t change it for the world. It’s scary to think that one day they will leave and then I’ll be an empty nobody with no interests and passion for anything… with no stories to tell!

My children are the only thing I don’t doubt -I don’t doubt that they love me and they need me, but other than that I’m a huge bag of self doubt and an over thinker… I overthink everything in my head. If I meet new people I instantly think they don’t like me. I mean why would they? I have nothing to offer, why do I even care?

My one love that I’ve always had is being a hairdresser since I was 14 when I was a Saturday girl (well maybe longer if you count sally salon I use the run on holiday with all my family!!) My job has seen me through it all and I still love it just as much. Ryan has built me a hair studio in the garden and it’s all mine! I love it and I love that I have this as well as being a full time mummy and watching my babies grow. Getting the balance right will take some doing but I’m positive we can achieve it. So with all this I wonder how I can find time to find something else for me? And annoyingly I don’t know what it is I really want? As I write this I’m realising that maybe I should strive to just be the best I can be at the things I already have? Be a more organised mummy with more quality time for them, make my new business boom, and spend more quality time with Ryan as a couple and seeing friends. Maybe I don’t need to see more and have more? Does this make me boring? Or is it ok to want more on top of all this?????

Twelve months later : I am a firm believer in fate and that things do happen for a reason… after having a cardiac arrest and being diagnosed with Brugada Syndrome, suppose now I’ll always have one story to tell!

I am so grateful and can now see why everything we’ve done has worked out for the best. For instance having our children in our early 20’s and wanting to be done by the time I was 30. Thank god I did because maybe I wouldn’t have wanted to have them knowing I could pass it on? Or maybe I’d have undergone lots of tests and decision making, maybe now the condition is active, pregnancy would have been so much harder? Who knows…

I’m so thankful to have them. My three children, my sisters two – knowing that their live’s could be affected by this condition. The future sparks a passion and need in me to not only be more grateful, but raising awareness in undiagnosed heart conditions in young people. Living with new diagnoses – how it changes life knowing they will have all the support and latest research available.

I think in answering my original question it is ok to have other parts of you and your life. But to stop and look at what you actually have and what holds the real value in your life, because all the material things at the end of the day don’t really matter. However pretty they are! And not forgetting that everything has a way of working it’s self right.

Since our hugely successful cake sale I now feel I would love to do more. None of us know what people are going through behind closed doors and I loved the feeling of people coming together to help one another…

Who Ate All The Cakes?

At the end of November we held our CRY Great Bake Sale. Before I reveal the grand total allow me to tell you about how much it meant to me and to say some important thank yous.

Never have I seen so many people, friends and family turn out in such force. You were all awesome! Thank you. There was family that travelled a 4 hour round trip to surprise me! Friends of friends, family friends, the cake lovers, the people that have their own personal reason to support the charity – all gathered together in one place, spilling out onto the street!

I’ve never felt such an over whelming feeling of love, kindness and support. Looking out over the packed room, everyone buzzing about (mainly from all the sugar!), I felt utterly speechless.  Of course, the cake sale was always about so much more than just eating cake. For me, having the chance to meet people that day and hearing how the charity resonated with them too, made it all the more special.

Boy do you guys like cake!! We raised more money than I could ever of imagined with people being so generous. Our raffle was epic! Tickets sold like hot cakes (see what I did there…!), as chief ticket seller my good friend Louise didn’t even get a chance to eat cake!! Huge thank you to Louise and everyone else who mucked in with selling tickets as no one could have imagined so many people would actually come!

It’s always that thing when you start an event, the self doubt creeps in – will anyone show up? But I needn’t have worried! The support we had from local businesses who donating amazing raffles prizes, and cakes was immense! Thank you to each and everyone of you. Oh and the cakes that people donated…  the cakes were epic!! We had some real show stoppers (see all the wonderful cakes in the gallery below), in fact they were so good that I didn’t even get a chance to have a slice of the chocolate heaven looking one! But again these weren’t just cakes, these were cakes made with love that people had obviously spent hours over and donated. Many of these amazing bakers I didn’t know personally, some just turned up… I still just can’t believe your kindness! Thank you.

With our Queen of Hearts tea party theme we decorated the room upstairs in the Jelly Roll Cafe given to us by owners Debbie and Ange (my Mum). Deb went above and beyond, buying cake boxes, bags, supplying tea and coffee, organising tables and choosing themed props! Thank you. This really wasn’t my event it was a family one, Vikki my sister had organised some fabulous raffle prizes, made delicious brownies, helped set up the night before and ran the stall on the day! Since the cake sale Vikki has also been diagnosed with Brugada Syndrome. At the moment this seems to be presenting at Type 3, which is the lowest risk, but Vik will be undergoing further tests to know more soon. So this has really become a family cause.

Mum was on tea and coffee and what a fine job she did for the entire duration! There was no time to stop, Vik and Helen (another of my lovely friends I’d roped in to help and my god did we need her) were stars, dishing out the many, many cakes to the endless flow of people! So many people came that we packed the cafe to the rafters spilling out onto the street to continue the cake eating! Thank you, thank you, thank you!

I couldn’t say much on the day as I mainly stood in total awe; my emotions bubbling under the surface. The Gloucestershire Echo sent a photographer that turned out to be a reporter too which threw me completely, as I wasn’t quite prepared for his questions, but we chatted, I cried, then did a cringe-worthy video!! (Safe to say I won’t be going into vlogging!!! ) There was just so much I wanted to say about  Cardiac Risk in the Young. Feel free to watch it here: http://www.gloucestershirelive.co.uk/news/cheltenham-news/theres-nothing-like-dying-make-835942

When the madness died down the last of my friends and family gathered round the tables as we sat stunned by the success of the day and had a well earned cuppa… and of course some cake! Vik, Ry, Aunty Les, Carys and Mum all started to count up the money pot… I started the whole thing saying that £500 would be a good amount to raise from a cake sale… as Vik continued to count up she looked at me and smiled, “well you’ve smashed the target you set Sal!” The total taken on the day was a staggering £1800!!!! Jaw dropping! But we knew we still had some cake to sell (Debbie kindly said she would continue to sell the cake in the cafe as well as collecting donations as the cafes chosen charity)… we were so close it would be nice to round it up to £2000 wouldn’t it?! I also shared my fundraising page on Facebook for those that didn’t make it to be able to donate their coffee and cake money, and the total began to rise…. later that day when the piece in the Gloucestershire Echo went out with a link to my fundraiser page we received even more donations, some from people I know and some that I don’t!

So… drum roll please… as it stands we have raised the staggering amount of £2169.25 including Gift Aid.

Thank you all so much from the bottom of my heart.

Sally xxx

Come and Eat Cake! 

Why fundraise?  Why do anything?

I’m not entirely sure why I feel compelled to be part of a fundraiser since being diagnosed with Brugada Syndrome. But I feel I’d like to give something back and to be part of the team of amazing people at the charity ‘Cardiac Risk In the Young’ (C-R-Y). C-R-Y have already put so much into their research and into diagnosing such rare heart conditions that without their knowledge, I for one, might not have had such a quick diagnosis and have received the necessary treatment to carry on leading a normal life. Thanks to their fantastic research, the procedures that are in place allow me to live in safety. For those that haven’t been so fortunate, C-R-Y supports the families affected by their loss. I can’t imagine how difficult that must be. Having been faced with a pretty close encounter I can say I struggle with the thoughts of what could have been, but luckily not the reality. As we wait for genetic testing, I pray to God I never do.

Cardiac Risk in the Young aims to reduce the incidence of young sudden cardiac death through, awareness, support, screening and research. They rely on fundraising and donations.

So not knowing how I could get involved – I saw lots of marathons, bike rides, walks etc… and then I saw the C-R-Y Raising Awareness week, 18th- 26th November. Sounding more like it… oh hang on… The C-R-Y Great Cake Bake!!  Yes! Now your talking.

As a massive cake eater and baker I felt this would be a perfect way to start my fundraising…  what could be better than making cakes, eating cakes and raising money?!

So with the support of my lovely family and  friends I will be hosting the event at the Jelly Roll Cafe in Tewkesbury, 10am – 12noon on Sunday 26th November… more details to follow.

I would love to see you there as this truly does mean a lot to me. For those that can’t make it I will be setting up a fundraising page, if you would like to donate your coffee and cake money instead… and I’ll step up and eat it for you!

We will also be running a raffle of lovely prizes. We have a few lined up already and we would be very grateful to any local businesses who’d like to contribute more Anh cake makers who would like to donate any sweet treats then they’ll be gratefully received too!

 I’m fine…

Last night my friend and I watched the family of Mother Pukka’s at the Cheltenham Literature Festival. They covered a range of topics that we’re faced with when parenting and, albeit very funny, there was a serious message too. They are campaigning for ‘flex appeal’ – flexible working for parents. Something I totally agree with and am incredibly grateful that I’ve been able to achieve this – setting up my own hair ‘shed’ and hairdressing on my terms! However, I know that it is something that mothers and fathers close to me struggle with still.

Aside from this, while I was listening to the Mother Pukka’s speak there was a line in particular that struck a cord with me; how as mothers we say “I’m fine” when asked “how are you?”

As if saying any other reply would be a sign of weakness, that we would be admitting that our so called ‘perfect’ lives aren’t all that we hoped it would be or that we would at least like it to be perceived as ‘perfect’.

Why is this? Why is it that when we aren’t OK we don’t say, “no I’m not OK, I’m having a shit day!” On what ever level that is?

This made me think (again! Dangerous I know!) that my friend of 7 years and I are actually pretty honest, especially with each other, if anything I’m sure we are over-sharers! Having both got 3 children and meeting soon after our first babies I think we both felt relieved to meet someone to share all that goes with having children; the ups and the downs! In fact there’s nothing we love more than a good moan over a cuppa! We’ve even been known to send rant messages written in rage! Just to off-load! These rages are usually caused by our beloved children or husbands, but phew it makes you feel so much better and to know it’s “normal” everyone goes through these feelings. Yet I do also know people that don’t share feelings and give the impression of perfection, which can be intimidating and surly exhausting or maybe it’s through the fear of being judged?  Or maybe, just maybe, they really do have their shit together and everything is perfect…. (I really don’t want to believe this is true!)

So I found myself asking why, even as an over sharing person who wears her heart on her sleeve and with a face that usually says it all, good or bad, that when asked lately, “how are you?” My imitate reaction has been, “yes I’m fine.”

Like saying anything but this wouldn’t be the right reply? Maybe it is the fear that my reply would make others feel uncomfortable?

I’m lucky that I do chat to close friends and family, but still there’s a part of me that feels I have to be the strong one and show everyone I’m fine. It’s all fine. Because still some of the ‘what’s ifs’ aren’t answered, and should my family members or children be diagnosed, I don’t want to make it worse for them. What if they are diagnosed, but without symptoms, it won’t be as bad? Or maybe its worse or all the same, who knows!?

I’m sure the fear that gets me still is the reality that I just might not have been here. Maybe day to day I am fine, but then I go places or hear things that get to me and then I’m not so ‘fine’.

Maybe ‘fine’ is the answer you give without thinking, it’s neither one or the other. It’s not fantastic but it’s not terrible. Maybe fine is the answer you give before delving deeper either way. Depends who asks the question.

Moving forward with Brugada…

We’re a team and now is no different to any other challenge we’ve faced and humour has helped lift the mood!

Since looking into brugada syndrome my sister found a charity C-R-Y that supports cardiac risk in the young. They want to spread the word to young people to get tested and to be aware…

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I’d like to help others and I’d like to support the charity. I haven’t quite worked out how yet but will be thinking of ways and will let everyone know when I do!

Family friends and so much support…

Well it goes with out saying that Ryan, my partner in life, and father of my 3 amazing children, is the real hero. He saw it all and reacted so quickly, he’s the one who’s here for me 24hrs a day running around after me and the kids.  It’s been hard for him as he saw me lifeless. To get the image of me not breathing out of his head is hard… not to mention that now I’m home if I don’t reply to messages or answer the phone straight away he panics that something’s wrong. He’s also getting his head around my thoughts and feelings, but together we’ve got this. We’re a team and now is no different to any other challenge we’ve faced. Again, humour has helped lift the mood! Ryan said to me on his first visit to me in hospital, “for a minute I thought I was getting the mortgage paid off” that twinkle in his eye! Cheeky bugger… he did it again… he made me laugh when I was about to cry!

My friends have been amazing, messaging every day whilst in hospital, visiting me and keeping me smiling! Their support has been invaluable. Listening to all my thoughts and worries without judgement, just support. It’s times like this that you really do value your girls… Not to mention my family that have all pulled together helping with the kids, shopping and cleaning the house and again just the endless messages of love and support… I like to joke, that I was just testing how much everyone loves me!

Thoughts, lots of thoughts… 

I’d like to think I’m a practical person and take things in my stride, always trying to remain positive, and brugada syndrome should be no different right?

I’d like to think I’m a practical person and take things in my stride, always trying to remain positive, and Brugada Syndrome should be no different right? But I’ve been thrown by how I’ve felt at times! I’m not one to just cry… (I normally only cry at TV programme’s).

In hospital I cried most mornings, but even then I came to see that it’s not all bad. As a family we haven’t suffered much in the way of tragedy. We didn’t really have anything to moan about. Unlike the ladies in the ward with me. This one lady was not only in with her own heart condition, but had lost her husband a month before, her one son had died and the other son was suffering from face cancer… I mean seriously… it does make you stop and think. Really what was I crying about? I was still alive.

But still you can’t stop your thoughts can you? I had nights just lying in bed awake worried to sleep, thinking and thinking… once the device was fitting I lay there wondering. I wonder how painful it’s going to be if it happens again? What will the defibrillator feel like? Almost just waiting… suddenly you become so aware of your heart beat. One night in hospital I had a moment when it was racing. First of all, I just thought I was imagining it, but then I told the nurse and he checked the monitor I was wired up to. Yes, it had had a moment of 145bpm. Scary, but I felt reassured that I wasn’t making it up!

I worry that this condition is hereditary for my family and for my children and although we will be having genetic tests done, and if needed procedures will be put in place, you can’t stop the worry you feel as a parent.

I’ve felt so upset watching the kids playing, knowing that that night could have very nearly been the end. The end of me getting to be a part of it all and that feeling that I could have been robbed of mine and their futures. I know it hasn’t happened, but I was lucky, so so lucky.

Another blow for me was being told I can’t drive now for 6 months! And 6 months thereafter any further attacks. So my independence has been taken, routines have to change, but it can be done. Then my mind has started to wonder – do I want to be responsible for the kids in the car and other people on the road… what if?

But then, what if nothing ever happens again, ever?!

I’ve also gone from dreading it happening again to wondering if it happened again maybe I might see a sign or symptom, so I’ll know when it’s going to happen?

Because what if I’m crossing the road, what if I put my children (my youngest only being 2 and a half) in danger?

Drinking alcohol has to be done sensibly.  I think mainly as dehydration is one of the key triggers. For me, the day it happened I had 4 cups of coffee and no water all day, well that’s school holidays for you – no time to think about me!

So water now has to be a must. I haven’t had a drink yet as I’ve been taking painkillers but I’m sure I will in time.

How would the kids react?

So far we have drip fed information, so not to scare them. So far they know I have had a cool gadget put in to keep me safe! And if I was to faint what would you do? Our eldest is almost 8 and said “I’d call 999″… phew!