Doing Life in Lavender

  This, whilst not a photo I would normally have, is a film that has some significance to me. This is my go-to watch if I'm having a bad day, or when I was younger and I had clusters, I'd have 48 hours of Austen and this would always be the first thing I'd watch. I'd set up the floor with my duvet, pillows, blankets and giant stuffed creatures and set myself up for hours of seizing and watching Austen adaptations. This film would always be number one on the list! Michael wasn't keen to watch this with me (I was asking for ages!) but we struck a deal once my convulsive seizures were pretty much under control, that the next time I had a bad day he would have to watch this 6-hour classic with me! Turns out the next bad day I had was a few months later when I was admitted to hospital. One of the first things I asked to be brought to me in hospital was a laptop and this DVD. It's a classic book, I love this adaptation and it pretty much never fails to cheer me up. It...

  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! Today I thought I'd show you the first time I met a cuddly toy killer whale called Shamu. For a stuffed creature he has been pretty important in my epilepsy story for the past thirteen years. He has been not only a great comforter as a child accompanying me into hospital even in recent days. As I grew up he came in very handy as a cushion to land on as I rather precariously moved around the house on my bad days. I, even now, if I'm having a bad day will crawl around carrying him underneath me as I go so that if I do seize I have a soft landing and don't injure myself.  He is also the guardian of my family's circulation. Let me explain... I've been known to get very grabby when things get bad. If I have hold of something tightly it can make me feel more safe and secure when I'm having a rough day. I can't injure something squishy and full of stuffing like Shamu and if I'm grabbing onto him, I'm not cutting off the circulation of my famil...

  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! 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...