Doing Life in Lavender

  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 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! 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 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...

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...