Doing Life in Lavender

  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 a teddy bear I have had for nearly 8 years. Apparently stuffed animals are important to me in coping with my epilepsy because he also has a story to tell. This teddy bear has no name, but is just known as "my gosh bear" or more precisely "my GOSH bear". He was a birthday present from all the nurses on the ward I was staying in when I had my 15th birthday in Great Ormond Street Hospital having EEG telemetry. I was admitted for telemetry on my birthday which I was ok with. I was just settling in to my room and waiting to be wired up when the nurses came in singing Happy Birthday with a stash of presents! I was so embarrassed at the singing but so excited that I still had something to celebrate on my birthday other than wires being attached to my head! Among the presents the nurses gave me was this bear and he pretty much didn't leave my side all week! And nearly every time I've needed a cuddly toy for comfort since then and I haven't...

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! 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...