Doing Life in Lavender

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 wonderful people! Today, with it being the beginning of September and schools going back, I thought I’d share some of my experience of epilepsy at school. I tended to be quite a quiet and awkward child at school, but that was just my personality. I was only loud and a little bit crazy with people I was completely comfortable around. That tended to mean I had fewer but closer friends at school. I was a bit of a nerd. I loved books. I was always reading and genuinely loved learning (if geography wasn’t involved!). I was also unashamedly a teacher’s pet. However, I was also not very good at standing up for myself, which ended up with me being bullied a bit. The group of friends that I did have made being bullied so much easier. I didn’t really care if at lunch I could go and hang out in our tiny corner of the school. I also had a motto that got me through any kind of bullying whether related to my epilepsy or not. I think it was my mum who first said to me that no one’s...

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...

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! 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.

Hello again, lovely people! Today I'm talking about medication and the impact it can have. Medication can be a huge part of anyone's life. It isn't just epilepsy, however as it is something that pretty much everyone with epilepsy has to deal with, I thought I'd share my personal experiences on it. I'm currently on four medications for my epilepsy; Carbamazepine, Zonisamide, Clobazam, and Levetiracetam (if it seems like a lot that's because it is!). Managing four medications can be tricky and I've had a lot of experience with a variety of medications so I thought I'd share some of all that. If someone starts having seizures and is given a diagnosis of epilepsy, AED's (Anti-Epileptic Drugs) are nearly always the first treatment that is tried. Fortunately, roughly sixty percent of people's epilepsy can be completely controlled with AED’s. However, the process of finding the appropriate combination of medications can be a long and difficult one. Pe...

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...