“I’m me. That’s just how it is.”

“I’m me. That’s just how it is.”

by Chrissie Parker

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I have a saying. “I’m me. That’s just how it is.”

This saying describes everything about me, but more importantly my epilepsy. I was diagnosed with the condition when I was about eighteen years of age. It came after two years of having episodes (passing out). My mum was convinced it was epilepsy as other relatives had suffered with it, but the doctors weren’t so sure.

One day while sitting in a doctor’s office, my entire world changed. I was in my late teens, I had a job, I was learning to drive, I partied and I drank alcohol. No one can ever tell another person how he or she will react to bad news. Everyone takes it differently. But I was shocked when the doctor delivered the diagnosis.

I had epilepsy.

Suddenly everything changed. My driving lessons were cancelled and my license was revoked. I was told I shouldn’t climb ladders, scuba dive, sky dive or drink alcohol. I was told to avoid flashing lights, and not ride a bicycle unaccompanied. I felt like my life had stopped.

Worse. I felt like it was over.

I was now under long term care of my doctor, I would have to look after myself, get plenty of sleep, and take medication every day, probably for the rest of my life. I think that was the hardest thing, knowing that I was now reliant on medication, and that my medical condition would now dictate who I was and what I could do. It was a sobering thought, and it took me a while to process the news and deal with it.

The only thing that stopped me from completely going to pieces was that I remembered my Grandfather and Auntie. Both of them died from neurological conditions; brain hemorrhages, when they were young. It was at that moment that I considered myself lucky, I may be reliant on medication and I may have to curb my lifestyle, but I was still alive and that counted for a lot. I needed to live my life as best as I could, if not for me, for them.

In the years since my diagnosis, I learned to live with the ups and downs of having epilepsy. In 1997 I finally became seizure free and was able to re-take driving lessons. I passed my driving test the first time with flying colours and the freedom of being able to drive was amazing, I had so much freedom, and no longer had to rely on buses or lifts from family and friends. My medication was working and I felt like I was finally living with the condition, controlling it, and not letting it run my life.

In 2006 however things changed when my grandmother died suddenly. I had been overworking, suffering with stress and had stopped eating breakfast. In October 2007 I had been ten years seizure free, but I had forgotten some very important things. I had become complacent and not looked after myself. Couple that with grief and the balance tipped.

I collapsed at home and had a big seizure, and was rushed to hospital. In the hospital I had another seizure and ended up being admitted to a ward. When I was finally released back home, I felt like I had been hit by a bus. My energy levels were the lowest they had ever been, and I knew I had a huge mountain to climb. I tried to get back to normal, but I had burnt the candle at both ends for far too long, and my body needed time out, it needed to heal. I was sent back to a neurological consultant who reviewed my epilepsy. I had to undergo all of the usual tests and my driving license was revoked again.

I continued to have seizures and in the end I had to give up my job as the stress of it coupled with the long hours I was working weren’t doing me any good, so I resigned.

I took six months off, learned how to rest, how to relax, how to eat properly and live with my condition again. In those ten years of being seizure free I had forgotten how to live with epilepsy and had ignored the warning signs. I had to reacquaint myself with the condition and train myself to spot the signs again. I felt like I was right back at square one and it was disheartening.

It is now 2014 and I can (with a quick knock on wood), say that I have been seizure free for almost five years. I know I have been here before, and that it could change at any moment (touch wood again!), but I am keeping everything crossed that it continues. I have learned my lesson and it was a very big one. If I need to eat I eat, if I need to rest I rest, if I need time out then I take time out. I don’t work full time any more, I can’t, but I do work when I can and I have thrown myself into my writing and I absolutely love it. I don’t earn much money, but I am happy and most importantly I’m being me, the person I want to be, epilepsy or no epilepsy, and that is the most important thing.

I don’t just live with epilepsy, it lives with me because “I’m me. That’s just how it is.”

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2 comments

  1. I have epilepsy too. Due to prematurity at birth. I was placed in an incubator for two weeks. My mum said I had seizures until I was four then it stopped. Middle of 2002 at the age of 10. I got my first ever seizure again that lasted from 10pm-11am. Mostly doctors thought I have lost it. My memories and recalling my own identity and my family.. Sadly the doctor’s assumption was wrong. But I did had a bad time in studies. Took time to catch up and study.. and scoring for exams. It was a struggling situation.

    But 12 yrs had passed. I am now almost 23. Yes I have seizures. But not frequently, it comes 2-3 times in a week for 4-5 minutes only.. Every 4-5 months. It has now became like a routine.

  2. I also have epilepsy. Frontal lobe, with all kinds of different kinds of seizures. It got really bad starting about seven years ago and now I have some form or another every day. I used to be a hairstylist and an instructor of a beauty school. Now I cant work or drive, look forward to holding my grandchildren, babysit, take a walk by myself or even live alone. I was inspired by your story, and you are right I guess we are lucky because we are alive…it just doesnt feel like it sometimes.

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