Thursday, September 1, 2016

something I don't really talk about/ but i'm talking about it now

So, I'm not really sure if I've talked about it here on my blog but I have epilepsy.
I usually don't talk about it because I don't necessarily want to draw attention to myself or make people feel sorry for me, so please know that is not my intention right now as well.
However, I did watch a movie last night about a guy who had a stroke and his road to recovery was rough and he had seizures after the stroke too.
Now, I'm not comparing my seizures to having a stroke because that is a completely different disease and different ball park.
But it did kinda make me realize that not a lot of people really get stuff like that.
I mean it's hard too, granted, it is.

But, that doesn't mean we shouldn't be aware of how it is or try to understand.

I guess that's why I'm writing this.
I know because people don't understand, they sometimes make jokes about things like that.
Or perhaps they don't think it's a big deal.
And, granted, in the grand scheme of things, having a few seizures in my life isn't a big deal.
They're not fun to have and they're really scary but when they are controlled by medicine my life is pretty normal.

People wouldn't really know unless I told them.

That's why people make jokes about it in front of me,
because they wouldn't know.

But that's part of the problem; just because you don't think a person has epilepsy it doesn't mean you have the right to make jokes about it. Because you don't know how it feels or affects people. Just because you know what it looks like on the outside, you don't know the half of it.

I've had people say things like "well, just imitate having a seizure and maybe you won't have to attend" or even a professor scroll up and down on the screen of computer and projected for all class to say and say "anyone here prone to seizures?" as a joke. These people don't say that because they are heartless. They say it because they are unaware.

So, I'm going to talk about my personal experience a bit.

It started, for me, when I was 16 years old.
It was in the early morning and I was asleep until I was awoken by my muscles vibrating/shaking and I tried to open my eyes but I couldn't see anything and I tried to call for help but my mouth started making guttural noises instead and I felt like I was falling and then my brain shut off. From that point on, I didn't know quite what was happening. I had no control over what was going and my brain wasn't functioning like it should have been. At first, all I could do was hear and then I was able to see. There were strange men looking at me and asking me questions and the questions didn't make sense to me at the time so my answer was a mumbled "I don't know". What's weird about after having a seizure and coming out of it, shortly afterwards, you will have missing memories. It's like black holes. Somethings happened because you went from point a to point b but you don't know what and the only way you will find out what it was is if you have other people there who can tell you. But you don't remember. So, I don't recall much after that except I was rolled into an ambulance. I didn't really know what happened or why I was going on the ambulance and I didn't notice the iv tube in my arm at first either. I remember the ambulance being bright and white and the person on the ambulance was telling my Mom and I that it was most likely that I had a seizure and to not worry too much because it's actually normal for kids to have a seizure once in their life and then never have it again. That's what the doctor at the hospital ended up saying too. So, I was sent home with bruise and bump on my head (because I did fall out of my bed and hit the end of my desk) and a messed up tongue because during seizures you are prone to bite and chew on your tongue.

My story doesn't end there though because two nights later, I had another one.
After that, I was taken to a neurologist where I was put on medication and told I wouldn't be able to drive until I was two years seizure free and I was not allowed to ride rollercoasters.

The good news was that the medication controlled my seizures... or at least it did for awhile.
The medication worked for awhile until a few years later, I randomly had one again.
They increased my dosage of medicine.
A week later, I had another one.
Then they tried putting me on a new medication to take in addition to the one I was already taking and after a couple of increases, I stopped having seizures again.
It's been over two years since I've had a full on seizure and I am thankful for that.

But, the thing was, I never knew if the medication would work.
Or at which increase it would work.
And my seizures being interspersed throughout a week or two made some terrible nights waiting to see if it would work and being horrified when it didn't.

For me, it's not the pain the next day of sore muscles and a chewed up tongue.
It's the losing my senses, losing my memory, and losing myself and not being able to do anything about it.
The seizure wakes me up before it starts and so I know it's going to happen but there is nothing you can do to stop it at that point.
You can't.

There were many nights where I couldn't fall asleep because I was afraid of having one (my seizures only come in the nighttime).
But the thing is the doctors say that not getting a good amount of sleep or being under stress can help cause seizures.
Ironic, isn't it?
I can't fall asleep because I'm stressed out about having a seizure.
But lack of sleep and stress cause seizures.

Thankfully, I've been better since it's been such a long time since I've had one.

But every now and then the fear creeps in about how long will it take until I get used to this new medication and I start having them again?

It already happened, well we think, with the first medication.
Will it happen with the second?

These are things that I try not to think of but are always at the back of my mind.

Then, there are the medications.
I take 13 pills that are seizure related each day.
I've been taking seizure medication since I was 16.
And sometimes, I can't help but wonder who I was before I took all those meds.
I mean, I am grateful for the meds because I'd much rather be sad, moody, angry, sleepy, etc. than having seizures on a regular basis.

But there are things I notice and don't quite understand.
Like, I am always sleepy.
Always tired.
I can get the proper amount of sleep and drink coffee in the morning and still be really tired/ exhausted.
But, at the same time, in the evening I feel more awake.
It's harder for me to sleep.

Some days, I feel moody and sad and really don't know why.
I can pinpoint things that are sad in my life, but I don't always know why certain days make me feel sadder about them than others and days that have no special meaning to them.
Sometimes I can't help but wonder if it's a personal attack from the Devil or if it's from the medication or what.
I really don't know.
Maybe it isn't really anything.

But I know seizure medications have a lot of side effects for other patients too so I know it's definitely a possibility I could have some too.

Not trying to make that define my life,
because it doesn't.
But it's another thing I think about.

Then there's the anxiety and fear that you somehow forgot to take your right dose or maybe you took more than you should have.

I've had those before and you know what? I've never had a problem with that.
Because I really make it an effort to take the right amount and I really believe I have.
But it's important to me, so I get anxiety about it and rewind in my head over and over again that moment of me taking my medication. Because I can't bare the thought that one day I might have a seizure and it's because I thought I took my medication but I didn't.

To sum it up though,
I want to go back to my first point.
1. I don't want you to pity me because of this.
2. I don't really want to draw your attention to me but to epilepsy

I gave you an in depth look on my personal struggles of being an epileptic.
Now, there are also many different types of seizures an epileptic can have.
It's probably different for each person.
But this is my experience.

I live a normal and happy life like any 22 year old.
I went to college and graduated with an English degree.
I dance and played soccer and ran track.

It didn't prohibit me living my life.

But its still something big enough that we shouldn't make jokes about.
It's still something that terrifies me and I don't think too many people will get and understand.

There are many other things and illnesses that people have and that jokes are made about all the time.
So, I'm not limiting this to epilepsy.
We should educate ourselves and not make jokes about what people have because it's actually not funny.
And if you were in that position you wouldn't be laughing either.

Having a stroke, having seizures, having cancer, having anything of the sort is not funny.

They are real and they are serious and it's something that the people who have them can't control and escape from.

So, all this to say, just try to be aware and supportive of people who face these type of things and be careful about what you say.

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