Doing Life in Lavender

  Hello again! This year, due to Covid-19, my work had to put on hold the plans it had for Purple Day in March. Therefore all our purple celebrations are happening now, in November, during Epilepsy Awareness Month. The picture above is my personal attempt at something we are encouraging people to do which is bring a bit more purple joy into the world with Purple Doodles. Despite being told there was no theme, every doodle on the piece of paper above has some kind of meaning. It is all based on my childhood, hence the princess crowns, flowers and friendship bracelets. However, there are also lots of nods to my epilepsy in there! There are teardrops, representative of my crying during seizures. There is me asleep, which is a nod to the fatigue and exhaustion seizures can give me. There is a brain, due to the fact that epilepsy is a neurological condition. There is also a very poor attempt at drawing an EEG (although I have been told it looks like a peacocks feathers by multiple peopl...

Hello again! I've got no idea why I'm dragging up these photos! I've spent years trying to bury them into nothingness at the bottom of my Facebook page but unfortunately, it works perfectly for what I'm trying to say. I've talked a lot about various different triggers of mine throughout this photo challenge. One I haven't spoken about much is sleep deprivation. If my brain doesn't get enough sleep I start seizing. I was always the boring kid at sleepovers past about 9 o'clock because I needed to sleep. This photo is the result of a prank that I can now admit how funny it was (even if it took a few years!), at a friend's sleepover where I was the only person asleep! I had to be that kid though. Even now, if I have too many nights of poor sleep together, it'll trigger seizures for me. Now my meds have things more under control, so my twitching will just get worse, but if I didn't get enough good sleep, that used to trigger a full cluster of sei...

Hello again! This is another photo that probably wouldn't exist if it wasn't for my epilepsy. This is a photo of two cuddly neurons (brain cells). If you ask my dad they're my only brain cells! I've always had a passion for science and it was always my best subject in primary school. However, anyone who has had to spend any extended period of time with me knows I'm a giant biology nerd. And a large part of my fascination with the human body and how it works comes from having to try and understand why my brain was different from everybody else's when I was younger. As a child, I grew up learning (and I'm still learning) all the jargon that neurologists use. That meant I knew a load of words, and I knew what they meant for me with my brain. But when I studied the Brain in Biology at school it was so exciting! I got to learn all the complicated words for how the brain worked without abnormal activity! My passion for biology and the way the human body works is s...

  This, whilst not a photo I would normally have, is a film that has some significance to me. This is my go-to watch if I'm having a bad day, or when I was younger and I had clusters, I'd have 48 hours of Austen and this would always be the first thing I'd watch. I'd set up the floor with my duvet, pillows, blankets and giant stuffed creatures and set myself up for hours of seizing and watching Austen adaptations. This film would always be number one on the list! Michael wasn't keen to watch this with me (I was asking for ages!) but we struck a deal once my convulsive seizures were pretty much under control, that the next time I had a bad day he would have to watch this 6-hour classic with me! Turns out the next bad day I had was a few months later when I was admitted to hospital. One of the first things I asked to be brought to me in hospital was a laptop and this DVD. It's a classic book, I love this adaptation and it pretty much never fails to cheer me up. It...

Hello everyone! This is a photo that would not exist if I did not have epilepsy. It is the bucket of money I raised for the charity Young Epilepsy from a cake sale that I put on when I was about 17. As someone with epilepsy, as I got older I became more passionate about education and awareness surrounding epilepsy. Therefore when I got to sixth form, as my confidence was growing, I wanted to do something to encourage my school to educate themselves about the condition I experienced on a day-to-day basis. I thought the way to motivate teenagers would be with cake so I put on a Purple Day cake sale. I had so much cake leftover and lots of people disappointed they hadn't been able to get cake because they had forgotten money because...well, if you've ever met a teenager, then you'll know that the teenage memory occasionally leaves a little to be desired... And so we carried on the next day, and the next day, and the next day! We ended up with a whole school week of a cake sale...

  Hello again! This might look like a random selfie and that's because that's exactly what it is! This is a selfie I took when I was on a break when I did work experience, aged seventeen. What I didn't know when I took this photo was that later that day I would see my first seizure (where I wasn't the one seizing, I mean!) I had been judging people for so long throughout my childhood for the way they reacted to my seizures, and suddenly I was the one in their shoes.  Seeing a seizure myself gave me a much deeper appreciation for what it was like to be on the other side of a seizure. The feeling of helplessness and a greater appreciation of what my friends and family do for me. I realised how upsetting seizures could be to watch, and that they could be scary! I am pleased to report that I did not panic, however I did not take the lead on managing the seizure. I was just put in charge of timing it. I was only the work experience girl after all!

Hello again! So today's photo is where I feel safest when I'm having a bad day. My living room floor, on my quilt, surrounded by pillows and with Shamu who you may have met yesterday somewhere very close. This is me on a rough day during sixth form procrastinating from an essay I had to write by trying out the camera on my laptop but hey the photo came in handy!    When I was little I fell off the sofa whilst seizing, and ever since then have always felt safer and much more comfortable on the ground for the simple reason that there is nowhere to fall! So on a rough day, I will spend my time on the living room floor. With space around me so I don't hit anything if I do have a seizure, and lots of squishy things to make me as safe as possible. I have Shamu who helps me move around the house if necessary, and there is almost always a fan in the room as well so I don't overheat as overheating is a trigger for me. I'll almost always be found either in a vest and shorts...

 Hello again! Today I thought I'd show you the first time I met a cuddly toy killer whale called Shamu. For a stuffed creature he has been pretty important in my epilepsy story for the past thirteen years. He has been not only a great comforter as a child accompanying me into hospital even in recent days. As I grew up he came in very handy as a cushion to land on as I rather precariously moved around the house on my bad days. I, even now, if I'm having a bad day will crawl around carrying him underneath me as I go so that if I do seize I have a soft landing and don't injure myself.  He is also the guardian of my family's circulation. Let me explain... I've been known to get very grabby when things get bad. If I have hold of something tightly it can make me feel more safe and secure when I'm having a rough day. I can't injure something squishy and full of stuffing like Shamu and if I'm grabbing onto him, I'm not cutting off the circulation of my famil...