Doing Life in Lavender

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...

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...

Hi again! The support from my last two blogs was overwhelming and I just wanted to say a massive thank you to everyone who took the time to read them! Today I wanted to talk about my personal experience dealing with misconceptions and myths surrounding epilepsy. However, if anyone would be interested in a blog where I actually go through some commonly held misconceptions and myths, tell me in comments or drop me a message and I’ll try my hand at myth busting blog style in the future. There will always be people who make assumptions about epilepsy, and think they know everything they need to know. I know this isn’t everyone, but unfortunately it happens a lot. Thankfully most people are willing to listen.   I am so grateful for my Primary school who listened and worked with me and my family and never showed any kind of preconception when I arrived. The kids were great and just got used to me seizing in the playground, in class, and sometimes (embarrassingly) in assembly. Th...