Doing Life in Lavender

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 ...

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.

  (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!

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...

Today marks the start of National Epilepsy Week and if you’ve been around this blog for a while you know I never miss an opportunity to use an epilepsy related holiday/event to talk about something important to me! I’ve recently realised how much seemingly random stuff in my bag is there because I have seizures. So this week I decided to go through some of the random stuff in my bag that I would not be carrying around if it weren’t for my epilepsy and hopefully explain how something that seems very simple can actually be quite important. The reason I carry around so much is because I want to be prepared for any eventuality regarding my seizures. And that covers quite a lot of ground, resulting in carrying around quite a lot of stuff! You may be aware of some mums and their superpower of having everything needed for any possible situation. At least mine always used to be on the ready with her (only slightly cooler looking) Mary Poppins bag! This week I’m talking about some of the stuf...

  Hello again and Happy Purple Day! Today is Epilepsy Awareness Day around the world (in Canada it’s even a national Holiday!) I always love Purple Day as it is a time to celebrate the people living with epilepsy daily and raise awareness for the condition that I’ve been living with for so long.   I’ve never known life without epilepsy but it’s so unknown, and yet it’s the fourth most common neurological condition, affecting between 50-60 million people globally. Because not many people know much about it, and it affects so many people, I like to use Purple Day to try and make some noise!   The past year has been a bit of a bonkers one for me, not because my epilepsy has changed all that much, but because of the way I have seen how much my epilepsy impacts everyday life. I started this blog this year focussing on my experiences living with epilepsy and it has forced me to sit down and reflect on things I’ve never really thought about before. Writing about my journey has...

Hello again! It's nice to be back! Today I thought I'd briefly talk about triggers. I realised I'd ended up talking about my own triggers quite a lot back in my Photo Challenge in November, so I thought I'd expand a bit today.  Probably the most important thing I can say about triggers is that every person has different triggers for their seizures and that sometimes there can be seemingly no trigger. Every person's epilepsy is different and is therefore impacted differently by biological or external factors. Some people might be triggered by fluctuations in blood glucose levels, some people are affected by flashing lights and others are triggered by physical exertion. The list of potential seizure triggers goes on and on. A lot of the time the seizure trigger is unknown but one of the most common triggers for a seizure is stress. Even things that can seem so innocent to one person can be a trigger to another and vice versa.  My own list of triggers goes a little lik...

Hello again! Once more I find myself in the position where life has taken over and I'm behind on my writing schedule! I hope to have something up soon though I won't promise next week as I want to take a fair amount of time planning and editing this next one.  Hopefully see you all soon!  Lots of love  💜💜💜

        Hello again! As the year ended and a new one began it seemed like a good time to reflect on what the last year has been like and what I want to accomplish in the one ahead.  2020 has been a crazy, ridiculous, stressful year. It has been a year of extremes for me. I've found incredible joys and yet I've also had to learn how to cope and manage with new difficulties.  Throughout 2020 I haven't had any improvements in my seizures although I am blessed that for the most part I am still able to do my job and am not limited in lots of the ways some people with epilepsy find a struggle. I had a major dip as a new medication made things worse than better, although my next appointment my consultant took me straight back off it again. During this period though, I had a seizure in front of a patient and while it was severe myoclonic rather than a full convulsive seizure, that was quite a difficult experience to come to grips with. I felt weak, or like I was ma...

Hello again! Today I wanted to talk about the importance of community in epilepsy. I've mentioned before that I grew up being the only person I knew with epilepsy. That was a really isolating experience for me growing up but I don't think I realised how isolating it was until I found others going through the same as me.  I have recently been welcomed into an epilepsy group where we can just share experiences, chat, have fun, and for an hour a week I can feel "normal". At least I don't feel like I stick out like a sore thumb. And if I do, it's because I'm me and I'm a little bit bonkers and not because of my epilepsy. I've loved discovering this little community and they've made me feel so welcome. I thought I didn't need to know other people with epilepsy. I didn't need to be part of a community because I had this epilepsy thing down, I'd been doing it for so long. And then I met other people, and I spoke to other people, and it f...

 Hello everyone! Welcome back after my November photo blogs. Today still isn't going to my usual style but I was struck by something that happened to me the other day and I wanted to talk about it. We live in a society where we need to see something to believe it. Invisible illnesses are real and impact so many on a daily basis and yet we as a society have very little sense of how impactful they can be until we experience it ourselves.  I was on a bus the other day, twitching making it impossible for me to safely get upstairs but there were no seats downstairs. The disabled seats which in this instance I feel like are there to help me were all filled and I didn't have my medical ID on me. Because I had no medical ID on me I, an otherwise fit and healthy-looking 22-year-old didn't feel like it was fair to ask any of these potentially able-bodied people to move. They were all at least 40 years older than me! But that left me downstairs by the driver unable to socially distanc...

Hello again! It's the last day of November! I don't have even a proper entry for my photo challenge today. It's a picture rather than a photo but I thought I'd take the opportunity on the last day of November to properly introduce you all to my new Instagram! And this is my new logo for it, created for me by Michael! (Thank you!) I've been blown away recently by the Purple community I have found on Instagram and thought that instead of my personal Instagram being a constant spam of blog updates I'd create a page specifically to give you blog updates, and where I can also give you updates on what is going on with my epilepsy, get a bit more real and go a bit more in-depth rather than sugar-coating it for social media. If that isn't what you want filling up your feed, that's fine. I get that. However, if you fancy blog updates and real-life epilepsy talk, please go follow Doing Life in Lavender on Instagram! 

  Hello again! This is a very recent photo that means a lot to me personally. This is the selfie I took just before pushing the button to publish my very first 2 blogs! This is something I would never have done if I had lived my life without epilepsy. I wouldn't have a lifetime of stories to tell! This blog has even just in the last few months been a really cathartic experience as I've been able to throw all my feelings on a page!  That's been really helpful for me and hearing people's responses to my stories has been unbelievably humbling and at times really moving. My epilepsy is something I have never struggled with sharing with people who needed to know around me, but I never dreamed of having the courage to share this part of my life with anyone in the world who happens upon it. It took me till I was about 16 or so when I started realising I wasn't the only person in the world with epilepsy, and raising awareness for epilepsy became something important to me. N...

Hello again! This is a card I was sent from some incredibly lovely people at my church, the last time I was in hospital. I am so blessed to be able to say that this isn't unusual when I'm hospital-bound. Each card of encouragement, support or assurance of prayer for me is something I treasure. I've kept every single one! When I'm feeling rubbish or am in hospital, it is such an encouragement to know I have a church family praying for me. Cards like this remind me I'm not alone. I not only have the support of my church family who prays for me, but I also have the almighty God of the universe holding me in his hand, and that's who we pray to!  Whether it's cards, visits in hospital or prayer, I know I am incredibly blessed to have my church family helping me through.    

  Hello again! This year, due to Covid-19, my work had to put on hold the plans it had for Purple Day in March. Therefore all our purple celebrations are happening now, in November, during Epilepsy Awareness Month. The picture above is my personal attempt at something we are encouraging people to do which is bring a bit more purple joy into the world with Purple Doodles. Despite being told there was no theme, every doodle on the piece of paper above has some kind of meaning. It is all based on my childhood, hence the princess crowns, flowers and friendship bracelets. However, there are also lots of nods to my epilepsy in there! There are teardrops, representative of my crying during seizures. There is me asleep, which is a nod to the fatigue and exhaustion seizures can give me. There is a brain, due to the fact that epilepsy is a neurological condition. There is also a very poor attempt at drawing an EEG (although I have been told it looks like a peacocks feathers by multiple peopl...

  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...