Doing Life in Lavender

This is my pill pot! This contains all the medication I take. All the anti-seizure medication, all the medication to counteract the side effects of the anti-seizure medication and more gets carried around with me everywhere I go (unless I've forgotten!) If I have forgotten it, I tend to find myself in a bit of a pickle! (That's understating it slightly!) I'm trying to get better at remembering it though, as I've gotten myself in some tight spots where I'm patching together a dose from what I keep in my mum's bag, and my family's car.  And when I can't do that, I have to accept that I'm going to be twitchy until I get home. This is such a small thing and yet so much of my health depends on my ability to keep it organised and on my person.

This isn’t applicable to everyone, but one of my triggers is low blood sugar. When my blood sugar drops too low, I can start seizing. This is why I carry around snacks in my bag! It does come in handy though. Some of the medication I take, for dealing with the side-effects of anti-seizure meds, has to be taken after food, so it’s useful to have something to be able to eat so that I can ensure that I’m prepared to take my meds. Having a snack isn’t quite as important as making sure I have a drink, but it’s still useful to be able to have it in case I need it!

  This is really comforting to have when I'm out and about independently, like my medical ID. Having a card that explains what my seizures might look like and how to respond to them if I'm found having one out in public is just another safety net that hopefully someone will find and be able to respond appropriately. This is especially reassuring as my seizures aren't typical to what is taught when you are taught about Epilepsy on first aid courses (my brother went to medical school and wasn't taught about seizures that looked like mine! I'm weird.) This card has what my seizures look like, how long they last for, as well as at what point to ring an ambulance. It also contains emergency contact information to get hold of my family. This combined with my medical ID creates a safety net for me when I go out by myself that even if something does happen, I have given the people around me as much information possible to try and help me in that situation.

This is a seasonal one, but this is another tool I carry around with me to help me manage one of my main triggers. I’ve spoken before about triggers & one of them is overheating. Last summer, during a heatwave, I carried this cool towel with me everywhere! Mostly as a hat! It came in very helpful when I was overheating and needed to cool down quickly. Here’s how it works, you simply need to run it under water of any temperature then wring it out and there you go, one towel of freezing cold soggy goodness. The weather at the moment isn’t inspiring me to keep it in my bag for now, but I know it’s there and I’m sure it will be useful when the sun decides to come out.

I have had tonic-clonic seizures throughout my life.( Tonic clonic seizures | Epilepsy Society ) I have been given medication to use if my seizure lasts longer than 2 minutes, administered by somebody else of course. Thankfully I haven’t needed this medication in years, but it’s still really important I have it, just in case! Whilst I now understand the importance of keeping rescue meds on my person, I haven’t always been so understanding. I was nearly unable to go on a school trip because the school lacked someone able to administer the medication, if necessary. Nowadays I understand the need to be prepared & that situations can change quickly, but this was difficult to explain to 12 year-old me & if that’s why I was missing out on a trip, it didn’t go down well…( my mum was a LEGEND! She came up with magical solutions. My younger self didn’t realise how much she sacrificed for me.) I can now appreciate the need to be ready for any situation. After 11 years more experience...

This is my medical ID. I have it in 2 forms that never leave my person. I never take off this necklace. Well not unless my baby niece, who likes eating it, is around! The reason I have a necklace is specifically so that I don’t have to take it off as my work in a hospital means I cannot wear a bracelet. I also have a card (along with the necklace which are from Medicalert ) which has a bit more detail on it. However, both include information on my epilepsy and allergies as well as a way to access my full medical history.  These are really helpful as they mean, if anything happens to me and I end up in an accident, it’s much easier to access my medical history, this includes what meds I take and what I’m allergic to. These things give me more confidence to go out independently. Trying to get me to wear my medical ID when I was little was a palaver, I hated it! Thankfully, I’ve started to understand what it does for me, so I feel much better about wearing it and appreciate the sa...

  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! 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 everyone! This is another random selfie with a story. This is a story about independence though. Or rather a lack of it... This selfie would never have happened if I hadn't needed to be dependent on my family in a way I've gotten used to, but still don't really like.  Some of my seizures occur on a daily basis. However, some days are worse than others! On the days when it is worse, I am often less able to do day-to-day things that I normally take for granted, such as being out alone or using public transport to get into work. That's exactly what happened on this day. I wasn't feeling my best and couldn't get the bus to work. This resulted in my brother taking me down to where he was working, at our church that day, and I spent about 3-4 hours hanging out in a Covid-empty building working on a ramble for you lovely people! My work is only a few minutes from my church so I was able to get there relatively safely knowing my brother could come and help if I ...

Hello again! This was a photo taken in the middle of a heatwave.  Overheating is one of my triggers so a heatwave can be pretty problematic. But part of my life is managing anything that could trigger a seizure, as well as noticing what my triggers are. Some of my other triggers are sleep deprivation, low blood sugars, and stress. But overheating has always been a big one for me. So when we had a heatwave earlier this year one of my colleagues at work suggested a cool towel that has been revolutionary for me. When it was really hot and I started twitching because I was overheating I started wearing it on my head. Even in public! In this photo, I'm out with my fiancé on a lunch date and I started twitching because I was too hot. The result was this look! I might look like a pirate, and I think Michael may have been a bit embarrassed by me looking like that in a restaurant but it helped to manage one of my triggers so I didn't really care! I'd rather look like a pirate in a f...

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! 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...