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 ...

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 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 everyone and welcome to my photo challenge! So for my first photo, I thought I'd start off with the last photo taken of me before my horrible downward spiral a couple of years ago. This is me starting to feel unwell with Gastroenteritis or some kind of tummy bug. Seizures started severely and I was admitted to hospital but then they didn't stop. I only remember flashes of this hospital admission and my family were kind enough to not take photos of me repeatedly throwing up! I do remember singing. I remember them really struggling to put a cannula in and I remember being really grateful for IV medication. However, after I was out of hospital, I didn't properly recover and things drastically changed. I gained weight because I wasn't able to do much of anything. My ability to do my job was impacted heavily. (I did manage to binge the entirety of F.R.I.E.N.D.S far too quickly though!) Anxiety came into my life and I started experiencing panic attacks when I was stru...

Hello again wonderful people! Today I wanted to talk about independence which is something I’ve talked about before. This time though, it will be the sole focus of my ramble. The feeling of not being as independent as I would like to be is something I have struggled with continuously as I have grown up, and as I get older it has only gotten worse. Any young child is pretty much totally dependent on grown-ups to help them through life, whether they have epilepsy or not. This meant that when I was little, I really didn’t notice too much difference between myself and my peers. There was little difference apart from me being the only kid in my swimming class to need 1:1 supervision in the water. As a child I lacked independence anyway, so my epilepsy didn’t change much. This was helped along by the fact that my parents were determined for me to have as “normal” a life as possible. Things only started getting more complicated as I got older and I started sticking out like a sore thumb. Wh...

Hello again lovely people! I am sorry for the delay but I’m glad that this blog is finally here! Today I wanted to talk about friendships. I do not think my epilepsy had a big impact on my friendships. However, I do think my friendships impacted my epilepsy and how well I adjusted to it.   I had a couple of friends who were close, practically since birth who really got my seizures, but also weird quirks and all the emotions that came with my seizures. These girls grew up with my epilepsy and were there right from the beginning. Our friendships were never affected by my seizures. We were just best friends who loved spending time together but when they needed to, they looked after me. They accepted me and my slightly special brain and they helped me feel normal when I felt different. I never felt like an inconvenience around them. As kids, I’m fairly sure they were still more qualified than most adults to handle my seizures. They were the only people I could have sleepovers with be...

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 wonderful people! Today, with it being the beginning of September and schools going back, I thought I’d share some of my experience of epilepsy at school. I tended to be quite a quiet and awkward child at school, but that was just my personality. I was only loud and a little bit crazy with people I was completely comfortable around. That tended to mean I had fewer but closer friends at school. I was a bit of a nerd. I loved books. I was always reading and genuinely loved learning (if geography wasn’t involved!). I was also unashamedly a teacher’s pet. However, I was also not very good at standing up for myself, which ended up with me being bullied a bit. The group of friends that I did have made being bullied so much easier. I didn’t really care if at lunch I could go and hang out in our tiny corner of the school. I also had a motto that got me through any kind of bullying whether related to my epilepsy or not. I think it was my mum who first said to me that no one’s...

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...

Hi there! Me again. I’m glad you came back!   I hope you enjoyed my introductory blog! You’re discovering another thing about me. My tendency to massively overuse exclamation marks when using the written word to express myself… Oops! Joking aside though, in this blog I wanted to talk about loneliness and isolation. This is something we are all experiencing in a way we never have before because of the Covid-19 virus. It’s also something that we all experience to some degree or other, even before we used the words ‘Corona’ or ‘Lockdown’ so frequently. The feeling of being alone, that no one knows what it’s like to walk in your shoes; it’s a feeling we all know but for people with chronic medical conditions, their condition can be a reason for them feeling it more acutely. We aren’t the only ones, but chronic conditions, such as epilepsy can be the cause of such feelings and I know that personally my epilepsy has been the biggest cause of my feelings of loneliness and isolation th...

Hi there! Nice to meet you all! My name is Rachel, I’m 22 and I have epilepsy. Despite the fact that this is the way I’ve introduced myself to you, I have always fought to not let my epilepsy define me. I may have epilepsy but I am also a daughter, a sister, a fiancée and a granddaughter. I am a Christian and I know that while I have an earthly father, I also have a heavenly one and He loves me beyond what I can imagine. I’m blessed with some of the best friends this planet has to offer and I love them so dearly! I love musical theatre, Harry Potter and swimming. I am rarely seen not listening to music unless I’m at work, much to the chagrin of those around me and even though I have no skill, I love to make those around me laugh with my terrible dancing! Anyway… That’s me without epilepsy but epilepsy has impacted me pretty heavily since I was tiny. I had my first seizure at the age of eleven months old which was linked to an infection at the time but wasn’t diagnosed until roug...