Doing Life in Lavender

  Hello again and Happy Purple Day! Today is Epilepsy Awareness Day around the world (in Canada it’s even a national Holiday!) I always love Purple Day as it is a time to celebrate the people living with epilepsy daily and raise awareness for the condition that I’ve been living with for so long.   I’ve never known life without epilepsy but it’s so unknown, and yet it’s the fourth most common neurological condition, affecting between 50-60 million people globally. Because not many people know much about it, and it affects so many people, I like to use Purple Day to try and make some noise!   The past year has been a bit of a bonkers one for me, not because my epilepsy has changed all that much, but because of the way I have seen how much my epilepsy impacts everyday life. I started this blog this year focussing on my experiences living with epilepsy and it has forced me to sit down and reflect on things I’ve never really thought about before. Writing about my journey has...

Hello again! Once more I find myself in the position where life has taken over and I'm behind on my writing schedule! I hope to have something up soon though I won't promise next week as I want to take a fair amount of time planning and editing this next one.  Hopefully see you all soon!  Lots of love  💜💜💜

        Hello again! As the year ended and a new one began it seemed like a good time to reflect on what the last year has been like and what I want to accomplish in the one ahead.  2020 has been a crazy, ridiculous, stressful year. It has been a year of extremes for me. I've found incredible joys and yet I've also had to learn how to cope and manage with new difficulties.  Throughout 2020 I haven't had any improvements in my seizures although I am blessed that for the most part I am still able to do my job and am not limited in lots of the ways some people with epilepsy find a struggle. I had a major dip as a new medication made things worse than better, although my next appointment my consultant took me straight back off it again. During this period though, I had a seizure in front of a patient and while it was severe myoclonic rather than a full convulsive seizure, that was quite a difficult experience to come to grips with. I felt weak, or like I was ma...

Hello again! Today I wanted to talk about the importance of community in epilepsy. I've mentioned before that I grew up being the only person I knew with epilepsy. That was a really isolating experience for me growing up but I don't think I realised how isolating it was until I found others going through the same as me.  I have recently been welcomed into an epilepsy group where we can just share experiences, chat, have fun, and for an hour a week I can feel "normal". At least I don't feel like I stick out like a sore thumb. And if I do, it's because I'm me and I'm a little bit bonkers and not because of my epilepsy. I've loved discovering this little community and they've made me feel so welcome. I thought I didn't need to know other people with epilepsy. I didn't need to be part of a community because I had this epilepsy thing down, I'd been doing it for so long. And then I met other people, and I spoke to other people, and it f...

 Hello everyone! Welcome back after my November photo blogs. Today still isn't going to my usual style but I was struck by something that happened to me the other day and I wanted to talk about it. We live in a society where we need to see something to believe it. Invisible illnesses are real and impact so many on a daily basis and yet we as a society have very little sense of how impactful they can be until we experience it ourselves.  I was on a bus the other day, twitching making it impossible for me to safely get upstairs but there were no seats downstairs. The disabled seats which in this instance I feel like are there to help me were all filled and I didn't have my medical ID on me. Because I had no medical ID on me I, an otherwise fit and healthy-looking 22-year-old didn't feel like it was fair to ask any of these potentially able-bodied people to move. They were all at least 40 years older than me! But that left me downstairs by the driver unable to socially distanc...

  Hello again! This is a very recent photo that means a lot to me personally. This is the selfie I took just before pushing the button to publish my very first 2 blogs! This is something I would never have done if I had lived my life without epilepsy. I wouldn't have a lifetime of stories to tell! This blog has even just in the last few months been a really cathartic experience as I've been able to throw all my feelings on a page!  That's been really helpful for me and hearing people's responses to my stories has been unbelievably humbling and at times really moving. My epilepsy is something I have never struggled with sharing with people who needed to know around me, but I never dreamed of having the courage to share this part of my life with anyone in the world who happens upon it. It took me till I was about 16 or so when I started realising I wasn't the only person in the world with epilepsy, and raising awareness for epilepsy became something important to me. N...

Hello again! This is a card I was sent from some incredibly lovely people at my church, the last time I was in hospital. I am so blessed to be able to say that this isn't unusual when I'm hospital-bound. Each card of encouragement, support or assurance of prayer for me is something I treasure. I've kept every single one! When I'm feeling rubbish or am in hospital, it is such an encouragement to know I have a church family praying for me. Cards like this remind me I'm not alone. I not only have the support of my church family who prays for me, but I also have the almighty God of the universe holding me in his hand, and that's who we pray to!  Whether it's cards, visits in hospital or prayer, I know I am incredibly blessed to have my church family helping me through.    

  Hello again! This is the corner of my room when I keep and organise all my medications! As you can see it's quite extensive! This is because my epilepsy has been termed pharmaco-resistant meaning that it doesn't respond well to drugs. Therefore, there are 5 medications I take on a regular basis. Then there are the medications I take to combat the side effects of the first 5. And then after that is the medication which I only take in case of an emergency (i.e. my rescue medication, anti-sickness). This looks like a bigger part of my life than it feels. Even though taking these medications has a massive impact on my health, I have grown very used to it. I can't remember a time when I wasn't taking tablets, though the medication regime changes as my consultant continues to try and improve control over my seizures. But because I am so used to it now, all I do is make sure I fill a pill pot every evening at the end of my day. I then have an alarm set to remind me to take t...

  Hello again! This is me doing possibly one of the scariest things I have ever done. This is me on the balcony of a cathedral in Basel, Switzerland. After climbing a spiral staircase and some steps that were barely there anymore I made it here. And then I went back down after taking a photo to prove I had done it! This was a terrifying and triggering experience for me. I know that heights are a trigger for me. They have been since I fell off a sofa when I was very little. So it's no surprise that I became really twitchy halfway up, but unlike the Castle in Ukraine, there was no option to turn back around! When I got to the top, I was clinging to the walls for dear life in the hope that I managed to get back to the ground before I had a full convulsive seizure, which I just about did! And felt much better once my feet were back on solid ground! I learned that day to avoid my triggers rather than try and push them to the limits. I could feel how close I was to a convulsive seizure a...

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 photo was taken four years ago when I helped out at a Christian-run kids camp in Ukraine. The camp was essentially part camp and part English language school. It was an amazing time, for the most part, but some things happened to make it a little bit more interesting than I was expecting!  For one thing, possibly the thing that had the biggest impact on me all week was that unbeknownst to me, Ukrainian summers are really hot! To this day, "yes" and "hot" are the only words I can remember how to say in Ukrainian. Spending time in that kind of heat, but also playing games and running around in that heat, was a bit of a trigger for me. I had my brother there to look after me but I struggled in that heat (hence the ridiculous headgear!) I managed by finding shade wherever possible and keeping a cold water bottle on me at all times.  Other than the ridonkulous heat though, one day all of us leaders went into town to see the sights. My epilepsy has alway...

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 another photo that there is a bit more to it than meets the eye. This was taken on holiday in Wales where a walk along the beach became a bit more complicated when I started twitching quite severely and thought I was close to a generalised seizure.  Heights have been a trigger for me since I was very young and I fell off of a sofa.This beach was at the bottom of a very steep hill and the height looking down over the beach was a trigger for me.  However, I didn't really recover when I got down onto solid ground, or even when I got back into the car like I thought I would. I struggled for the rest of the day, even later on when I was eating my dinner, I ended up sitting on the floor. Eating my dinner on the floor is a regular thing for me when I'm struggling, and I even do it nowadays when I'm feeling twitchy. It's a technique I use to feel safer and also I don't have to worry about the destruction of crockery if I do seize. I love this photo...

  Hello again! This is a teddy bear I have had for nearly 8 years. Apparently stuffed animals are important to me in coping with my epilepsy because he also has a story to tell. This teddy bear has no name, but is just known as "my gosh bear" or more precisely "my GOSH bear". He was a birthday present from all the nurses on the ward I was staying in when I had my 15th birthday in Great Ormond Street Hospital having EEG telemetry. I was admitted for telemetry on my birthday which I was ok with. I was just settling in to my room and waiting to be wired up when the nurses came in singing Happy Birthday with a stash of presents! I was so embarrassed at the singing but so excited that I still had something to celebrate on my birthday other than wires being attached to my head! Among the presents the nurses gave me was this bear and he pretty much didn't leave my side all week! And nearly every time I've needed a cuddly toy for comfort since then and I haven't...

  Hello everyone! This is another random selfie with a story. This is a story about independence though. Or rather a lack of it... This selfie would never have happened if I hadn't needed to be dependent on my family in a way I've gotten used to, but still don't really like.  Some of my seizures occur on a daily basis. However, some days are worse than others! On the days when it is worse, I am often less able to do day-to-day things that I normally take for granted, such as being out alone or using public transport to get into work. That's exactly what happened on this day. I wasn't feeling my best and couldn't get the bus to work. This resulted in my brother taking me down to where he was working, at our church that day, and I spent about 3-4 hours hanging out in a Covid-empty building working on a ramble for you lovely people! My work is only a few minutes from my church so I was able to get there relatively safely knowing my brother could come and help if I ...

Hello again! This was a photo taken in the middle of a heatwave.  Overheating is one of my triggers so a heatwave can be pretty problematic. But part of my life is managing anything that could trigger a seizure, as well as noticing what my triggers are. Some of my other triggers are sleep deprivation, low blood sugars, and stress. But overheating has always been a big one for me. So when we had a heatwave earlier this year one of my colleagues at work suggested a cool towel that has been revolutionary for me. When it was really hot and I started twitching because I was overheating I started wearing it on my head. Even in public! In this photo, I'm out with my fiancé on a lunch date and I started twitching because I was too hot. The result was this look! I might look like a pirate, and I think Michael may have been a bit embarrassed by me looking like that in a restaurant but it helped to manage one of my triggers so I didn't really care! I'd rather look like a pirate in a f...

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! Today I'm getting pretty real. Today I wanted to talk about something not often talked about; injuries as a result of seizures. I have it quite easy in regards to injuries due to seizures, at least in comparison to some people. I have had some injuries when I was younger, but no one thought it appropriate at the time to take a photo of me as a toddler getting my scalp glued back together because I've fallen out of bed seizing. I'm able to talk about that story so light-heartedly because I was so young and I remember absolutely none of it! However, for lots of people, injuring themselves seizing is a daily reality.  More recently I have been on a medication that has impacted my balance. I always knew I was clumsy but this has taken things to a whole new level. I'm falling over My feet for no reason whatsoever. I'm walking into anything and everything. The bruises on my legs could rival me at nine years old on a tree climbing spree! (That's impressive...