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! 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 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! 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...

Hi again! Firstly, thank you so much for the incredible response to the video I did last time with Michael! It means so much! Today I thought I’d take some time to discuss with you lovely people what it can be like having epilepsy at work, and what can help make life easier and safer whilst working. I’m going to try to make this not just personal experience, but also include things that can be helpful for managers to be aware of or have an understanding of if they have an employee with epilepsy.   I jumped straight from school into work and have only worked for two companies. As you do with any job, I had ups and downs with both. However, in regards to support in the management of my epilepsy I’ve had starkly different experiences.   I work in healthcare and have only ever worked in healthcare. However, in my first job my manager made no attempt to understand my epilepsy. The staff I worked with were amazing and asked questions to make sure they knew what to do if I had ...

Hello again! Today I'm talking about something really personal. Unfortunately, it's something that I think doesn't have enough recognition and so I think it's really important to raise awareness of it: that’s epilepsy and anxiety. Epilepsy can have a big impact on mental health, whether it’s your epilepsy or you have a family member with epilepsy. As I grew up and learned to deal with my epilepsy, the impact on my mental wellbeing was something that I never even really considered. At least not until suddenly, out of nowhere, it's something that I was dealing with. My epilepsy has always been on a general upwards trajectory even if there have been dips here and there. Adjustments to my medications have meant that overall, my epilepsy has gradually improved over the years. However, it was only after the worst dip my epilepsy has ever had that anxiety came crashing into my life. My seizures went from clusters every six to seven weeks to every day, maybe every oth...