Updated: Jan 29, 2019
We’re half way through the summer holidays and although we’re pooped with entertaining the kids 24/7 I must admit I bloody love it!
Shayne and Sienna spent the first 3 weeks of the hols with their Dad on an epic trip to Canada and we’re coming to the end of week 1 of having them back home with us. In the past 5 days we’ve managed to make a trip to Peterborough, attend my Mother’s special birthday BBQ at my Sister and her other half’s beautiful new home and myself and Emil even managed to attend a friend’s beautiful wedding. – it’s like celebration station lately! (WAHEY!)
This summer holiday has been one of the best holidays we’ve spent without going abroad in my life.
But what’s the title “ECGs, EEGs and Heart Monitors” got to do with the above? I hear you say…
Well, it’s a bit of a long story but I’ll try to keep it as short as possible.
As you may know, I have 3 children. Shayne - born in 2007 via emergency c-section (I was put to sleep as the epidural didn’t work and baby had an irregular heartbeat) Sienna in 2010 gave the theatre team a shock and saved me from the knife by popping out naturally JUST as they were prepping me for another emergency c-section. And then there was #TheBenji back in October of 2014. It was a planned c-section due to having a double placenta (one sitting lower than the other). It was also the best decision Emil and I made as it was a complicated delivery and recovery but we can spare the details for next blog 😉 .
When I say “having Benji changed our lives” I literally mean it in every sense of the term. Giving birth to all of my children changed me and taught me something new but Benji… He brought us all together as we became a blended family with Emil’s 2 children from previous. He also reminded us what it was like to change nappies and breastfeed (me of course, not Emil) again after such a gap between our eldests.
I thought I was managing being a mother to a newborn again until he was 5 months old and it became clear that our lives would never be the same again.
March 2015 I had my first “episode”.
I collapsed in the kitchen without any warning. That same evening again on our flight of stairs inside our flat.
When I came to I didn’t know where I was or recognise who Emil was. I was scared, I was confused, all I wanted was my Mum and Dad.
The next thing I knew, my Mum and Dad came around at 2 in the morning to help calm me down. In that period of waiting for them to arrive, Emil had brought up Benji who woke up as babies do during the night. Emil asked me to hold him whilst he did something and it pains me to say it but all I remember is looking at this baby and thinking “he looks so much like Shayne”. I got lost looking at his face and thought I was holding my Shayne as a baby.
Soon after my parents arrived and I cried – a lot. Mum kept asking me what I thought were ridiculous questions at the time but slowly I began to realise where I was and piece together who Emil and Benji were.
We all thought that in time memories would come back and that this was a “one time thing” but it wasn’t. I was referred to consultants in neurology and cardiology departments and for the next couple of years put under various different tests to figure out what was causing my day time black outs and night time episodes which appeared as night seizures in my sleep. For a while, I was put on medication for epilepsy which gave me dreadful side effects and spent days in hospital hooked up to EEG machines. Not forgetting to mention countless ambulance rides and trips to A&E for the really bad falls. I’ve had a heart monitor implanted in my chest since 2016 and am very much looking forward for the day it gets removed.
The effect this has had on my family has been tremendous. My Mum, Dad, Sister and Brother, Sis and Bro in-law have been so supportive, each pitching in in their own way.
Emil has truly been my rock throughout this, being so patient and understanding. Adjusting his working life to be more hands on with raising our children, especially when I’ve been so unwell to do my part.
These episodes leave my body feeling battered and bruised, my brain totally smashed. When I’ve had an intense one you can definitely call the next day a write off for me. I’d be in a daze as if floating and not really comprehending what’s going on around me and it’ll only be the day after that that I’ll start realising what I did or didn’t do the previous day and find myself having a total “blues day” where I’d “ugly cry” my frustrations of having this “illness”.
HOWEVER, we’re now in 2018 and I’m not even sure if you can call this an illness anymore… I went to the neurologist a couple months back and have now been officially diagnosed by a sleep specialist with what they call “Non-REM sleep parasomnia”. Yep, a sleep condition.
Which kinda makes sense considering all the symptoms, side effects, types of dreams/sleep I have etc. It also kinda makes me both happy and frustrated at the same time. Happy to finally have an answer but frustrated that I’ve endured 3 plus years of not knowing what was going on with my body.
Currently I’m not on any medication (yay) apart from the usual painkillers as and when needed (boo!) – which I’m happy about but still slightly miffed that I have no power to stop or prevent them from happening.
The point of this story was to explain why this summer holiday has been the best I’ve ever had without going abroad and the truth is… (and I know my close friends and family reading this may feel a type of way about reading this - I’m sorry - but…) It is the FIRST summer holiday we’ve had that I can actually remember us having in the UK.
I used to joke a lot about how I have a memory of a fish (pre sleep condition) etc. and I’ve always been known to my group of friends as “the joker of the group” but I guess deep down it’s not actually that funny. I struggle a lot on a daily basis and need to document EVERYTHING if I’m not to forget.
I’d love to meet someone with a similar or the same condition to learn how they cope with dealing with such a thing and even speak to those who are willing to share experiences of difficulties with their health whilst raising young children, so if you know anyone or are that someone please feel free to send me a message via email firstname.lastname@example.org, or leave a comment or even a DM on our Instagram! I’d love to hear from you!
I know this entry is different to what you may have typically expected of me but I felt it was time to start branching out and talking about different topics and experiences starting with my own.
I’ve also found writing somewhat therapeutic! – also makes a great journal for my poor memory *oops!
Moral of the story, I appreciate each moment I have on this planet more now than I ever did before. AND THIS SUMMER HOLIDAY ABSOLUTELY KICKS ASS!!
I wish you all a happy rest of your vacations and thank you for reading!
Til next time..