Epilepsy

 

 

Hello my lovelies,

 

As most of you know I have Epilepsy. What you don’t know is how if affects me and my day to day life. Now my epilepsy is tonic clonic, or grand mal as it used to be known. I don’t have any specific trigger, it could be hormonal, lack of sleep, missed medication (which I don’t do now I have a pill box), not eating or drinking properly or too much alcohol (again which I don’t do).

 

On Halloween this year, I had a seizure. Now throughout the day I had been having episodes and my parents noticed when I got home from work as I would stop mid sentence and stare. So that night instead of a bath I opted for a shower, just incase. I had got out, dried and dressed (thankfully). I was then sat on my bed, then I am on my floor looking up at my parents, thinking why are they here! When I tried to move, I like getting up right after I’ve come round, my dad gently holds me in place. The reason being...I’d smashed my mirror. Now I’m not talking small, I’m talking bathroom sized mirror, and I was laying in the broken glass. How I managed not to get any in me I will never know.

 

As my mum picked up the glass, after they had managed to get me into bed, she told me that they nearly called for an ambulance as I was seizing for nearly 5 minutes. The longest seizure I normally have is a minute. This seizure had no triggers what so ever, it just happened. Also I had no warning, normally I get a sense of the room shaking or a fuzzy feeling in my head and my head goes cold. Not this time, this time it was like my brain went ‘oh hello I’m going to misfire information and cause you pain’. Because that is what happens, your brain sends information and that information decides to take the quick route, and in doing so you end up on the floor looking like you are trying to break dance and failing miserably at it.

 

 

Yes, I’ve learned to laugh at myself over the years, but it did take a while for me to do so. Being a teenager with epilepsy was tough. Due to medication I gained weight and my hair went frizzy. I looked like Hermione from the first two Harry Potter films, sort of. However, since I matured and accepted my condition I became ok with it. Yes, the seizures are horrible, and afterwards I feel tired, I ache, I taste blood where I’ve bitten either my tongue or the inside of my mouth, and I just basically feel like crap. Oh and lets not forget the bruises that appear a few days or in my case hours later. 

 

I remember one time I had a seizure and I ended up with a huge bruise on the back of my thigh. It was almost the size of a hand, dark purple and it hurt when I touched it. I get that quite often, sometimes I spot bruises and I’m like ‘how did you get there?’. Living with epilpesy is hard, but I’ve learned to deal with it. I have the love and support of my family, even if I do scare them when I have seizures and all they hear is a loud bang and no answer when they call me (I apologise for that by the way). I don’t see myself as a suffering with epilepsy as some people do. I see myself as living with epilepsy day in day out. It is a part of me, it’s who I am. Also, it does not define me. Yes, I have to make certain changes to my life, like giving up on the idea of one day I will drive, because I know I won’t. But, none of that matters anymore. Those things aren’t the be all and end all. Of course being able to drive and not rely on other people or public transport would be amazing, but this is my life and to be honest I would rather rely on others and public transport, then run the risk of killing myself or others in a car crash, because I had a seizure behind the wheel.

 

When I talk about my epilepsy to others, for instance the day after my seizure I told my work collegues about it, just so that they were aware and could make sure I was ok during the day. They spoke to me as if I had told them someone had just died. I hate it when people tip toe around me when I bring up my condition. Today, even though thousands of people live with epilepsy in the UK and around the world, it is still Taboo. Same with mental health. Also, I’ve noticed that many still don’t know a great deal about epilepsy, they still only think flashing lights brings on siezures. They don’t know about all the other triggers or types of epilepsy. In my role as a TA, I have had to talk to some students about it and inform them of some of the facts.

 

But, epilepsy is not just the aches and pains or the seizures. It is also the unseen affects, not just of the person with epilepsy, but also of the people in their lives. Their parents, their children and partners (if they have any), I know my parents still find it hard seeing me have a seizure. I mean, what parent wants to see their child going through something they are both powerless to stop!? I would hate to see that, and I know my parents hate it as well. I know they would do anything they could to take my epilepsy away. Epilepsy is also the medication, the trips to see your neurologist, the depression of having another seizure, the anxiety of when will my next seizure be and where, it is also the constant battle of trying to live as normal as possible. 

 

If there is one thing that people take away from reading this, I hope that it is to never judge a book by its cover. Just because you think you know what is going on or what it is like living with something then do not judge or pass comments until you know the full story. I have had people go oh epilepsy isn’t that bad. Really? Well try losing two weeks of your memory and never getting it back, or waking up in the middle of an exam with people staring at you, or waking up in your hotel room in another country not recognising any of it. It is scary if you come round from a seizure and no one or nothing is there that you recognise. It is scary losing your memory. I get mini heart attacks when I can’t remember the smallest thing like the date after a seizure. The one last month I was reeling off a list to my mum of what I ate and did that day. Not to prove to her that I could remember, but to prove to myself that I could. 

 

I know it has been a long post and I apologise for that, but I needed to get this off my chest and let others know what it is like living with epilepsy.

 

 

Thank you for reading. Let me know what you think in the comments.