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Happy Purple Day 2023!

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Happy Purple Day all! I'm sorry it's been so long! Every year I get really excited about the opportunity to raise awareness for epilepsy! And every year I share a bit of my story, my epilepsy journey that hopefully does that. It's Purple Day and one of the reasons it's been so long is I was planning my wedding last year so I thought I'd share the most purple bits of my wedding!  Our flowers, as you can see, are stunning! And despite having a colour scheme of blue and red, they ended up being a gorgeous purple that still matched everything and I felt like they reflected me a little bit as well! Loved them!  I had a couple of flare-ups of my epilepsy throughout the day. The ceremony all went to plan. We actually got married but towards some of the photos we had immediately afterwards, my brain went a bit squiffy, as I like to call it. It was all fine because I was stood next to my new hubby who kept me upright, but immediately afterwards was a cake cutting! How was I

My Pillpot

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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.

Something to snack on!

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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!

Personalised Seizure Information Leaflet

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  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.

Something to drink!

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  (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!

Cool Towel

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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.

Rescue Medications

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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