Doing Life in Lavender

I have had tonic-clonic seizures throughout my life.( Tonic clonic seizures | Epilepsy Society ) I have been given medication to use if my seizure lasts longer than 2 minutes, administered by somebody else of course. Thankfully I haven’t needed this medication in years, but it’s still really important I have it, just in case! Whilst I now understand the importance of keeping rescue meds on my person, I haven’t always been so understanding. I was nearly unable to go on a school trip because the school lacked someone able to administer the medication, if necessary. Nowadays I understand the need to be prepared & that situations can change quickly, but this was difficult to explain to 12 year-old me & if that’s why I was missing out on a trip, it didn’t go down well…( my mum was a LEGEND! She came up with magical solutions. My younger self didn’t realise how much she sacrificed for me.) I can now appreciate the need to be ready for any situation. After 11 years more experience...

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 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 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! So this looks like a lovely selfie with my mum and it is. It's one of the nicer ones if I do say so myself! This photo was taken a couple of days into our family holiday to Germany in February. What this photo isn't showing is that the night before and later on that evening I would be in tears, stressed about even a regular height bed, all of which resulted in me sleeping on the floor for a couple of nights. I'm pretty sure this seizure activity was triggered by 2 things. I had spent 12 hours, maybe more in a car the day before and I'm not sure what but that always leaves my brain feeling a bit funny. However, the biggest trigger for me was my brain struggling with the jumping of time zones and the effect that had on when I was taking my tablets. My body struggles to adjust to taking tablets at a different time and getting used to that takes a little while when I first go on holiday and on the way home as well. Sometimes it adjusts quite quickly and I barel...

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...

  Hello everyone and welcome to my photo challenge! So for my first photo, I thought I'd start off with the last photo taken of me before my horrible downward spiral a couple of years ago. This is me starting to feel unwell with Gastroenteritis or some kind of tummy bug. Seizures started severely and I was admitted to hospital but then they didn't stop. I only remember flashes of this hospital admission and my family were kind enough to not take photos of me repeatedly throwing up! I do remember singing. I remember them really struggling to put a cannula in and I remember being really grateful for IV medication. However, after I was out of hospital, I didn't properly recover and things drastically changed. I gained weight because I wasn't able to do much of anything. My ability to do my job was impacted heavily. (I did manage to binge the entirety of F.R.I.E.N.D.S far too quickly though!) Anxiety came into my life and I started experiencing panic attacks when I was stru...

Hello again wonderful people! Today I wanted to talk about independence which is something I’ve talked about before. This time though, it will be the sole focus of my ramble. The feeling of not being as independent as I would like to be is something I have struggled with continuously as I have grown up, and as I get older it has only gotten worse. Any young child is pretty much totally dependent on grown-ups to help them through life, whether they have epilepsy or not. This meant that when I was little, I really didn’t notice too much difference between myself and my peers. There was little difference apart from me being the only kid in my swimming class to need 1:1 supervision in the water. As a child I lacked independence anyway, so my epilepsy didn’t change much. This was helped along by the fact that my parents were determined for me to have as “normal” a life as possible. Things only started getting more complicated as I got older and I started sticking out like a sore thumb. Wh...

Hello again! A few days ago I sat down with my amazing mum and had a conversation about what it was like to be the parent of a child with a complex neurological condition. Specifically me. During this interview, we discuss what it was like being my mum during a weird and complicated diagnosis, managing things like school, how my brothers were told I had epilepsy as well as a fair bit more!  This was not a conversation that would normally happen so it was really nice to sit down with her and try and get some of her perspective on certain things as well as her insights, people who have helped her the most and things that she has learned.  My mum decided that she didn't want to be filmed so for the most part this is entirely audio. I hope that's ok! However, because we are muppets, we didn't realise until after recording that we had used lots of people's names when we shouldn't have done. Thus, every now and then, a message will appear on the screen for clarification o...

Hello again! Today I thought I’d talk to you about my personal experience of hospital admissions. This is something that I’ve had very mixed experiences with. Most of my inpatient stays in hospital have been planned rather than me having to be admitted suddenly or taken in an ambulance as the result of my seizures. This is because, for the most part, my seizures are manageable, especially with a nurse mum! Hospital has always been a last resort for us because my mum can handle pretty much anything! Other than a couple of occasions within the past three years, all my most intense hospital stays were as a baby or toddler, either pre-diagnosis or newly diagnosed and I think this has somewhat shaped my views on hospitals. The majority of my time spent in hospital was planned tests and scans. Most of these were outpatient and I didn’t have to stay in, but when I did have to stay, it tended to be EEG video telemetry. EEG video telemetry is when electrodes are glued to your head to record w...

Hello again! I know this isn't what I usually do, and I might do another 'proper' blog on this topic in the future. However, I decided to do something a bit different and video an interview with my fiancé Michael about what it was like being in a relationship with someone with epilepsy, and how he thought my epilepsy had impacted our relationship.  This was all done in one take and I've never filmed a video like this before so please be gentle! There might be some slightly confusing moments so please let me know if you need any clarification at all on anything that I've said.

Hi again! Today I wanted to share with you just a bit about how my family has managed my epilepsy. I'm really fortunate in that my experience of family and epilepsy has been a really positive one and I know that isn't always the case. With that in mind, I just wanted to give a disclaimer that I am only talking from my own personal experience. I am incredibly blessed that God gave me a really supportive family. Both my parents, my two older brothers and more extended family have been amazing in helping me accomplish anything I choose and encouraging me. This is probably largely due to my parents, deciding when I was diagnosed that my epilepsy would never hold us back from anything we wanted to do as a family and I think this decision shaped me significantly. Helped along by my mum's nursing background and sheer determination, there was always an answer for everything. Things might need to be adjusted along the way, but she can figure out a way to make just about anything saf...