Doing Life in Lavender

  (Yes, it's a Fruit Shoot! This is what was already in my bag. They're small and convenient to carry around. Also apparently, I have the taste buds of a 7 year-old!) One of the important things for me to have at all times is a drink, not just because it is good for my general health, or because one of my medications makes it very easy to become dehydrated, but mainly so that I can take medication on the go. Sometimes I split my doses (please check with a medical professional before doing this!). As I mentioned in Rescue Meds, my condition can be unpredictable and there are times when I need to take medication early to adjust with that, this means I need a drink to be able to take my tablets. I have far too often been caught out needing to take tablets, and having no drink to take them with (oops…). This just doesn’t work when some of my tablets taste as vile as they do! Keeping a drink on me at all times is the best option!

  Hello again! This is the corner of my room when I keep and organise all my medications! As you can see it's quite extensive! This is because my epilepsy has been termed pharmaco-resistant meaning that it doesn't respond well to drugs. Therefore, there are 5 medications I take on a regular basis. Then there are the medications I take to combat the side effects of the first 5. And then after that is the medication which I only take in case of an emergency (i.e. my rescue medication, anti-sickness). This looks like a bigger part of my life than it feels. Even though taking these medications has a massive impact on my health, I have grown very used to it. I can't remember a time when I wasn't taking tablets, though the medication regime changes as my consultant continues to try and improve control over my seizures. But because I am so used to it now, all I do is make sure I fill a pill pot every evening at the end of my day. I then have an alarm set to remind me to take t...

Hello again! Today I'm getting pretty real. Today I wanted to talk about something not often talked about; injuries as a result of seizures. I have it quite easy in regards to injuries due to seizures, at least in comparison to some people. I have had some injuries when I was younger, but no one thought it appropriate at the time to take a photo of me as a toddler getting my scalp glued back together because I've fallen out of bed seizing. I'm able to talk about that story so light-heartedly because I was so young and I remember absolutely none of it! However, for lots of people, injuring themselves seizing is a daily reality.  More recently I have been on a medication that has impacted my balance. I always knew I was clumsy but this has taken things to a whole new level. I'm falling over My feet for no reason whatsoever. I'm walking into anything and everything. The bruises on my legs could rival me at nine years old on a tree climbing spree! (That's impressive...

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, 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...