Doing Life in Lavender

        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 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.    

  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 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...