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What You Don't Know When You Hear, 'I've Had a Seizure'

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I’ve had a chronic seizure condition for nearly 12 years now, and it has never had a noticeable pattern. The only consistency is that it’s affected by lack of sleep, fatigue, stress, anxiety, worry, illness and pain.

It’s become very normal for me to have a seizure. The severity has always changed, and I’ve had as little as one seizure in a year to up to five seizures a day. When my seizures are having a bad spell, hearing the words, “Ella’s had a fit,” is normal for my friends and family. It happens. They’ve all experienced it themselves with me before, they know how it works.

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But while you hear three words that you’re used to, I’m experiencing something that my body and I will never, ever get used to. I black out completely during a seizure, and have no recollection of losing consciousness. I suffer absence seizures where I zone out for periods of time, as well as tonic clonic seizures, which is a full body convulsive seizure.

Before I actually have the seizure, I experience symptoms like delayed vision, pins and needles and twitching, but I also obsessively focus on something. That could be something like using a pen to repeatedly scribble on the same area over and over and over again. It could be fiddling with my fingers. But sometimes it presents itself as self-harming behaviors. Sometimes my obsessive focus is on biting the inside of my mouth or my bottom lip, sometimes it’s grinding my teeth, and sometimes it’s scratching my face or body until I bleed. I don’t even realize I’m doing it, and I never remember having done it when I eventually come round.

Broken fingers, sprained wrists, sprained ankles, broken ribs, cracked ribs, bruised ribs, split lip, stitches, lacerations, black eyes, fractured nose, countless concussions and head injuries, scratches, bruises, chipped teeth. I’ve experienced all of these injuries at least once after falling during a tonic-clonic seizure. This means when the seizure is over, the pain isn’t over. It carries on and follows me for weeks – the pain causing more seizures, and more seizures causing more pain. When you hear, “Ella’s had a fit,” it’s over immediately. For me, it’s not.

After a seizure, I sometimes experience what is known as ‘Todd’s Paralysis” or postical pareses. This is where you experience focal weakness after a seizure, so sometimes I will wake up and not be able to move one side of my body, or I won’t be able to feel one of my legs or arms. The first time it happened I lost the feeling in the entire right side of my body and I thought it was permanent. I was terrified.

I was alone and I couldn’t reach my phone to contact anyone, so I had to lay on the floor until my husband realized something was wrong and came home a few hours later. The feeling came back slowly like pins and needles, and eventually I regained full feeling. This happens to me in around one in every 50 seizures, and scares the me every time. The paralysis can last anywhere from around 15 minutes to 48 hours after the seizure.

When I’ve come round, when I’ve realized what’s happened and I’ve registered the situation, thats when the guilt kicks in. The guilt that I’ve had to cancel something, the guilt that I’ve had to put my husband through the pain of it all. The guilt that I couldn’t hold it off.

Directly after a seizure, I feel like I have no value. I feel as though I’m a burden and only a burden, and I get into a bit of a funk. I beat myself up to the point that I convince myself that everyone is angry at me for letting them all down. I get angry that I can’t do what healthy people do, that I can’t handle anxiety, stress or pain without losing consciousness. I start to mourn for the life I could have if only I didn’t have the condition that I have.

The mental torture is without a doubt the hardest part of having a seizure. Finding the strength to pick yourself up after your body has failed you is more difficult than it sounds, and finding the strength to fight through the toxic thoughts is even harder. I have to remind myself that I achieve things and I’m successful in parts of my life despite my illness. I have to remind myself that not everyone will understand and that’s OK. I have to remind myself that people will always judge others, and that’s OK, too. It’s OK because at the same time, there are people who do understand. There are people who love you and support you even though you have to let them down sometimes. There are people who will never judge you for what you can’t help, and who will always be there to hold your hand when you need them.

So while you hear, “Ella’s had a fit,” and in the next thought it’s over, please spare a thought and remember that it’s not over so quickly for me or my husband. It could be a small seizure, it could be an injury, it could be something more sinister. It’s always a painful, exhausting and embarrassing experience and it’s always more real than, “Ella’s had a fit,” for us.

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Thinkstock Images By: Grandfailure 

Originally published: February 27, 2017
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