Monday, March 26, 2018

Purple Day

Today is Purple Day - the day to bring to the fore and into the public eye the attention of Epilepsy. This is an uncomfortable and very confronting medical condition that nobody wants to talk about or think about because it's not pretty, it's not a behind-closed-doors kinda thing.

No, Epilepsy is a brain condition which affects not only the person who is suffering from it, but their family and friends. This brain condition - and it's also a disease - is something I've been born with and have recently found out that it's genetic in my body. 

Man, did I feel like I was cursed!

But the doctors told me that it would take time to get myself well - time and patience. I had all the time in the world; but patience? Well, I wanted to do so much!

We have been to Melbourne and back, where I overdosed by accident. I've been in and out of so many hospitals and lost track of how many medications I've been on... and now so many years later, I'm eating a healthy vegetarian diet, don't drink alcohol, don't smoke (anything) and yet, still find it difficult to get to sleep at night. 


I have accomplished a few things I've always wanted. I'm living on my own now, and own a car as well. I've learned to cook, take care of myself and my home and learned to keep plants alive too. And these are things which are wonderful to accomplish in life - and they may be small to some people, but for me, they're majorly huge.

But today, I want to step forward and tell people about my condition/disease as it's not all what you see in the movies. It's nerve-racking, it's tiring and feeling like you're not in complete control of your life or anything you do - ever. 
It's not able to sleep in until 10am, all because you have to be up by 7am to eat with your medication or it'll burn a whopping big hole in your stomach and it hurts like hell.
It's having to pick and choose which nights you can have late on the weeknights just in case you stupid neighbours decide at the last second to have a 24-hour party and keep everyone awake not only on Friday night but also on Saturday night as well - expecting you and everyone else to sleep when they do.
It's looking at everything set out at a party and knowing you can't touch any of the lollies just in case it all collides with your medications - and opting for water instead of the crazy-coloured soft-drinks, while people give you a weird look and you have to explain you can't drink 'that stuff because it's full of crap ingredients I can't have.'
It's not only these things, it's the physical things too - the after-seizure problems of absolutely no energy, the scars you have on your body, the cuts, bruises and sore joints and muscles which take an age to heal. It's the stay in hospital where you can't sleep because your brain is still zapping away and you're waking up before anyone wakes you up to check your blood pressure. And it's the brain fogginess of wondering how long it'll be before you'll back to normal again - only to have this electrical short circuit screw you over again.


Then, there's the doctor's appointments, the blood tests you have all your life - more than most people do - just to keep your levels in check. Some of the medications I take can't be checked, so the doctors have to get my liver and kidneys checked to make sure one of the medications isn't shutting them down without my knowledge. This is the creepy part of being on medications for the brain: it affects everything else in your body.
The seizures I used to take in my past will come back and bite me in the arse because in a few years, I'll have to get my heart looked at due to my heart muscle and aorta being at risk of being weakened as I age. My bones are likely to weaken faster too; so I'm on Calcium pills at night - have been since my mid-30's - to keep them strong for when I'm older and my body ages.

And that's not all.

Every year, I have to get my eyes tested for my driver's licence and have a medical certificate from my doctors to say that I'm cruising along just fine... this means more blood tests to say that everything I'm taking is stable and a-okay. Only then will the government renew my licence to drive a car. If anything is not reviewed every year, I'm not allowed to drive anywhere. 

So, please do help me bring to the forefront of the news and people's minds today this majorly overlooked medical condition. 

It's only for one day a year I ask you to talk about this subject... so please wear purple today. Talk about Epilepsy and you'll be surprised who you know who has it. For one thing: you know I have it. 

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