Epilepsy Diaries #1

Tuesday, 26 March 2019

 It's been a while since I last uploaded an Epilepsy post & I want to try and make it a more regular thing, so I'm starting my Epilepsy Diaries with the hopes of writing a few updates every now & then. Of course it was only right to start today as it's Purple day / Epilepsy awareness day! Unsurprisingly  not a lot of people knew about it. Honestly, these posts are probably going to be a little rambley but I like being able to openly talk about my condition so I'm sticking with it.

Luckily for me, my condition has been relatively well controlled over the years, that was until last August. I had my first Tonic Clonic seizure in years, after work, at the bus stop, so many people and it wasn't fun. I was sat inside a bus shelter and ended up loosing consciousness and sliding head first down the side of the shelter, it could have been much worse but luckily I only squished my face a bit & hurt my neck. I was also lucky enough to have one of the nurses I work with there with me, so at least I wasn't on my own.

My body felt like it had taken a real beating after that, I struggled to get out of bed or build the energy up to even shower in the first couple of days after. I slowly got my energy back & took things slowly as it was a big old sign that I had most definitely been doing far too much for my body to handle. 6 years down the line and I'm still learning my limits. This also gave my mental health a big old kick in the face too, mental health and epilepsy often come as a package & you need to take time to focus on both aspects. I wasn't feeling myself for a while after that & even now, if I'm on my own I get a sudden panic a niggling that it's going to happen again. I know my body well enough now, to know if I'm having a bit of a symptomatic day & I try and take things a little slower. 
I've been feeling fairly okay recently, just tire very quickly but I have my neuro follow up in a few days so that's helpful.

Recently on twitter, people suffering with a wide range of conditions and illnesses were sharing their stories of basically dealing with dickheads where it was all concerned, the shit things people have said & done, I even shared my own, but it got me thinking...I had actually had far more shitty experiences than I thought....and I don't share them or try to raise awareness of why these are shit things to do. SO...guess what's next? My shit experiences. I suppose some are unintentional, some were, but either way they are things to learn from.

First up, the one I also shared on twitter.
I was at a bar, a man next to me noticed my bracelet had something written on it so he proceeded to ask about it, I explained it was a medical bracelet and had the word "Epilepsy" engraved on it. So of course he asked what would happen if he shined the light on his lighter in my eyes (and then did so before I could respond). Luckily for me & I suppose for him, I'm not effected by lights, I don't have photosensitive epilepsy but I did get to explain what a twat he was for trying to induce a seizure that could potentially cause significant harm to me.

Another incident that really got me was in a pharmacy collecting my medication. As I'm epileptic I have an exemption card, so I don't pay for my prescriptions. I handed my prescription over & my exemption card, then took a seat to wait for it. The woman in the queue behind me then decided to let me know "What a lucky bitch" I am because I don't pay. I offered her my lifelong condition and my exemption card so she could "feel lucky" too, but surprisingly she didn't know what to say. She just saw a young woman not paying for medication and assumed I was taking the piss. I made sure to show off my big bag of medication as I left. 

Now, this one is something going on right now. I am currently doing an apprenticeship which involves lots of essays and research and all the stuff I really struggled with when I was younger. Epilepsy plays havoc with my concentration levels and ability to absorb information quickly, when I've been at it a while I start to notice I'm reading things multiple times because it just isn't going in.
I can not just whack an essay out confidently knowing I've covered everything because my brain has absolutely refused to play ball. I'm now at the part of finishing all my written work an being put in a computer room with everyone else on our study days. It doesn't work for me, I try my best & then get stressed out. I've told the people I need to about it, but I keep getting sly digs like "I suggest you utilise your time" or " You need to manage your time or workload better" No hun, you need to listen to me, and the fact that my condition makes this 10 times harder, I know how I work best and where so maybe don't force me to do things that then makes it harder for me?
Oh, and now I need written proof that I'm epileptic. Cool.

It's shit being Epileptic. It's shit having a condition that effects you daily. It's shit that people are just so oblivious to it too.
Having a condition that effects every aspect of your life can be exhausting, having to remind people of it is even more so.

I feel like I need to speak openly about it, and my experience as a whole. Yeah, being a light of positive thinking might be what people want but I'm not that person. I'll share the highs, I'll also share the lows and I'll just chat a load of shit on the way too because that's what I'm all about. It's healthy to give in and realise that you don't have to be positive 24/7 , things are going to get to you and recognising that is an achievement in itself. Life is full of good and bad.

Emily-May x

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