My Life with Epilepsy

The seizures of my life

this is describing my personal seizures and how I like to be helped during a seizure

I have several different types of seizures.

I experience atonic seizures, also as drop attacks…basically I completely fall to the floor. I have broken my jaw twice, lost many teeth, and looked like someone beat me up because of these.

Atonic seizures are the seizures that keep me in a bubble. I don’t do anything alone because of these…it’s too dangerous.

I experience photo-sensitivity seizures. Which means flashing lights, movie theatres, shows, concerts, nighttime activities, repetitive noises, and nighttime highway driving. Pretty much going from darkness to light and vice versa is a no-no.

I experience Clonic seizures. During a clonic seizure, I may begin jerking in various parts of the body. I may have confusion afterwards.

I also have Tonic-Clonic seizures, also known as grand mal seizures. The grand mal usually lasts 1-3 minutes until I come out of it, but then, boom, I’m back into it for what may last another 30 -40 minutes.

I take Ativan sublingual for it. It goes under my tongue. I always carry it on me. It’s my security blanket. During the seizure, I am convulsing maybe one side or both sides. I usually like to be covered up. But shouldn’t be so it can be documented what side is seizing the most. I don’t froth or have saliva. But I may make weird noises.

I also have Catamenial Seizures. Yes, monthly seizures. Good old menstrual cycle seizures. Hormones are jumping around reeking havoc on your seizures. Did you know that 30-50% of epileptic patterns correspond with menstrual cycles? Vulnerability to seizures is highest just before and during flow and at ovulation.

Seizure first Aid: please stay with me. Only call an ambulance if I’m really hurt, but for the most part you need to stick two ativan under my tongue. Don’t be scared. I’ll walk you through it. Or call my husband. Make sure I’m safe laying down. Time my seizure. It will feel like forever. I may cry. Don’t keep asking me questions. I will talk to you when I’m able to. And remember, thank you for being there. Oh and don’t put anything in my mouth or restrain me.

I am always thankful for anyone who sits with me.

A gentle touch is fine. I just want to know I’m not alone.

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photo courtesy of supportepilepsyfighters

First Experience with CBD

I was always a bit afraid of the whole medicinal pot treatment. I think my drug and alcohol counselor kept creeping out and saying “no.” With a little help from someone, I was then set up and ready to go.

Now came the tough part: whether to use it. Wow, I felt like I was in high school. Back then I always said no.

So I have CBD (cannabidioloil) oil and CBD with a tiny bit of THC. I try a bit of CBD with THC. Well big mistake. I can’t move. I’ve lost concept of time. I need help getting to the bathroom.

Finally, I fall asleep.

Well that was a waste of time. Apparently I put way too much on the almond. This is all new to me. So I start taking straight CBD oil. That’s much better, but it takes two hours to take effect.

It seems to help as I go a couple of weeks without seizures, but after awhile the seizures return. I am advised to try vaping. I haven’t yet, but I’m still a bit on the fence.

Not sure why I can’t go any further.

I Have A Bubble

We live in a back split which means stairs everywhere. Which means bumming it down all the flights of stairs.

Do I always do it? No.

Do I hate it? Yes. Actually, I despise it.

Do I like being watched for my bath? No, but it’s for my safety.

I don’t enjoy being in my house for several days. I know people are busy and they work . And I know some people want the freedom of shopping alone and then stopping by for a coffee. Sure, she makes it, but I don’t leave.

I want to go to the library. I want to go to Fairy Lake to enjoy the outdoors. I want my friends back.

…Today is a bad I try to be positive but some days just plain suck. I miss freedom and independence. Today is a bubble day I will be stuck in my house. Hopefully tomorrow will be better.

Photo courtesy of epilepsy awareness

Trying to be Positive

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Picture courtesy of epilepsy awareness.

I feel I am pretty positive about my life. Sure, I have my down days but I think that comes with the territory. I love this picture of a girl telling you to rock on and be yourself. To me, that’s positive and inspirational.

Serendipity

Serendipity:”What people call serendipity sometimes is just having your eyes open.” -Jose Manuel Barroso.

I met my husband on November 29, 2003. We danced to the song “Dilemma” by Nelly and Kelly. We talked for a while. He seemed really nice and we exchanged phone numbers.

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We talked on the phone for a few weeks before going out on a date. We both had busy schedules and lived in different cities. But we always found time to talk on the phone.

I never once told him I battled with epilepsy.

Finally it was our first official date. I was so nervous. What if I have a seizure?

On the way to the restaurant we made small talk. One of the questions was, “Do I drive?” “No, I have epilepsy.”

He knew what seizures were but had never seen one or been educated about epilepsy. He was fine though and unlike others didn’t make up an excuse for why he needed to go home.

And this is how I met my husband.

Photo: On behalf of David Wolfe

WEDDING DAY

I think everyone has wedding day jitters.

I had to get my hair and makeup done, and I am so far from being a girly girl…

As I prepare, all these thoughts run through my mind:

“Oh crap, I need Ativan.”

“I’m so stressed out.”

“Have I eaten yet today?”

Finally, time to get dressed.

Wow I feel like a girl. Photographers are here. Smile, pose. “No, like this, stop fidgeting.”

It’s time. Instantly my mom knows I am about to have a seizure. We need a few minutes alone. I’m terrified of falling. She grabs my hand.

Amanda Marshall’s song, “Will you marry me” begins that’s our cue to walk the aisle . I make it down the aisle to Dave to experience the best day of my life.

All photos courtesy of Sabrina Savoy.

Being Thirteen

I was 13-years-old when I experienced a grand mal seizure, which was witnessed by my mom.

It was extremely confusing and terrifying at the time. Not much was discussed.

In the morning I was experiencing a seizure hangover. We were waiting to go to the doctors.

My mom went in first alone.

Then I was called in. I was told I was epileptic. I had no idea what that meant. The doctor had to explain everything.

I was baffled, but then came the bad news. The list of what I can’t do.

I can’t drive. My heart broke. I was only 13, but already obsessed with driving.

I was angry. Why me? I was just about to start high school in a few months.

I asked why and nobody could answer me. Hopefully I can be supportive to someone who is diagnosed with epilepsy because I found my inner strength.

My Escape

Sometimes epilepsy has some barriers. And sometimes loved ones have built walls around you

I have the type of epilepsy where you are never left alone.

Even taking a bath, I need someone there. “Can you hurry up?” No, I can’t, leave me alone.

Kelly, don’t walk on the driveway. Don’t walk across the street. Don’t go out with that friend. Sometimes I’m stuck in this house for five or six days.

I hate the thought of winter coming. It’s so lonely. The colder weather is when social media becomes my friend.

I would love to escape one day. Go to the library. I could blog there and people watch. Or Tim Hortons where I could use free WiFi and type for hours .

But I can’t, so I don’t. Sometimes epilepsy has some barriers. And sometimes loved ones have built walls around you.

People forget you need your freedom.

What The Hell Is Happening?

Hey, what is happening? Why is my vision all blurry?

Oh no, it’s starting again. It’s spreading through my body. It’s like last time. The room goes dark. I can’t properly see. The room goes silent. I can’t hear a thing.

My tongue is numb and now I can feel it coming.

No, please go away. I don’t know you. Leave me alone. I don’t deserve this.

My leg is shaking and I begin to lose control. I’m finding it hard to breathe. Please, stop whatever this is.

Why does this happen every night when my mom shuts the bedroom door? Why won’t this stop?

This doesn’t seem normal. Do all 10-year-old girls experience this every night?

I can’t call for help, as they will think I’m crazy, so I wait through the pain.

Finally it is over.

My mom wakes me up in the morning and I realize I am bruised and have pulled muscles. I ask to stay home from school because I am so exhausted, but my mom thinks I’m faking it.

I can’t tell her anything she will think I’m crazy, plus I have no idea what happened to me. It was so long ago.

Hi, my name is Kelly and I have been epileptic since the age of 3. What I’ve described was my childhood and something that has changed who I am. Epilepsy wasn’t talked about much growing up unless it was a fit or spell in the public, so I’m opening up to it now.

This will be my blog. It will be where I will share my stories and connect with those who have gone through similar experiences as I.

Please follow my writing as I describe my life with epilepsy.

Epilepsy Can Be Fun

It sounds odd, but epilepsy can be fun. It just depends on your outlook on life.

For me, this weekend is Buskerfest in Toronto at Woodbine Park and all proceeds go to epilepsy foundations. I personally have never been.Epilepsy Awareness Day is also fun.