Being Epileptic | My Story

The reason I started my blog was so I could write about my personal experiences and share my stories with others, hopefully inspiring in some way.  However, writing posts about things that are so personal to you is easier said than done.  I have been planning this post for weeks, but never had the guts to write it.  What do I say?  How do I say it?

Then I realised, if I don’t do it now then I probably never will.

As you can tell by the title of this post, I have Epilepsy.

Some of you may be wondering, what is Epilepsy?  This is a question that I ask myself on a regular basis.  Although I was diagnosed 4 years ago, I still find it difficult to understand what it is.

“Epilepsy is a condition that affects the brain.  When someone has epilepsy, it means they have a tendency to have epileptic seizures.” (Epilepsy Action)

The brain is such an important part of our bodies.  The cells in our brain, also known as neurons, are constantly sending messages to each other through electrical activity.  How I tend to understand this is, I imagine tiny people inside my head communicating to each other from different parts of my brain.  Like they’re on the phone or sending a text.  However, suddenly, too many messages are being sent at once and it is too much to handle.  The systems start to go out of control, nothing can get through, and it causes everything to stop.  This then results in a seizure.

Not all seizures are the same.  There are many kinds of seizures out there!  The most common types are focal seizures and tonic-clonic seizures.  I have tonic-clonic, this is when you lose consciousness and your limbs jerk controllably.  When you eventually gain consciousness, you don’t remember anything that happened.

From this post, I hope to spread awareness of Epilepsy and share my experiences of having seizures, hopefully helping others who are in the same position as I am.

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My name is Lisa, and this is my story.

I had my very first seizure near the end of January 2013, while I was at work.  Prior to this, I had just passed my driving test and so many changes were happening in my life.  On this particular day everything was fine, until my manager walked over and asked me how I was getting on.  For some reason, when she was talking to me, I could barely see her.  It was like she was just a blur, I was also struggling to hear what she was saying to me.  I didn’t know what was going on, I had never experienced anything like this before.  My manager kept asking me, but I couldn’t respond.  I felt like I was in a trance.  How do I focus?  How do I snap out of it?!

The next thing I can remember was that I was lying on the floor, and I could barely move my body.  It was like I had been turned into stone.  My manager and colleagues were reassuring me and telling me everything was going to be alright. Suddenly, I was put on a wheelchair and taken into an ambulance on the way to the hospital.  What just happened?!

It turned out I had a seizure.

After spending the night in hospital, I was told that it was the result of migraine and I went home.  Three months later, I had another seizure at work. Alarm bells started to ring, as no one was really sure why I was having seizures. After going to the doctor, and being referred to a neurologist, I was diagnosed with Epilepsy in June.

My heart was shattered! Why me? Why now?

Over the next few months, I was experiencing more seizures.  It was terrifying because I was waking up, lying on the floor, with no idea of what just happened.  One time, my mum recorded me as I was gaining consciousness.  It was basically me, lying on the floor, crying for 20 minutes because I couldn’t move.  It broke my heart, and I still feel emotional about it to this very day.  I can only imagine how terrifying it must be for my parents to see me like this.  Vulnerable and helpless.

I received so much support from my family, friends, work colleagues and professionals.  However, some people were more supportive than others.  I met with an Epilepsy Field Worker, she visited me every so often to offer me help and advice.  She was so supportive, and I felt like I could tell her anything.  I finally had someone who understood what I was going through, I didn’t feel alone.

So Lisa, what was the most terrifying moment you have experienced since being diagnosed?

In May 2014, I had a seizure at home when there was no one else there.  All I remember was I woke up lying on the kitchen floor surrounded by vomit. (disgusting, I know but true.) I stood up, which was impossible and started to walk through to my parents’ room.  However, I was still disorientated and I could hardly see where I was going.  Somehow, I ended up in my sister’s room and fell onto the floor.  Once again, I felt sick.  I needed help!!

Trying to use your phone and call someone after having a seizure is one of the more difficult things in the world.  After some time, I managed to call my mum.  I burst into tears and asked her to call my work for me, to let them know what had happened.  Some time later, I managed to stand up and walk through to my own room and fell asleep.  Luckily, my stepdad came home from work and was there to help me.

A year later, I celebrated my one year anniversary of being seizure free!  It was an emotional day for everyone.  That is one of my happiest memories, as everyone was so supportive and…  it also meant I was able to drive again!!  However, after driving twice for the first time in two years, I decided driving wasn’t for me.

Then, I managed to reach my two year anniversary.  I was over the moon.  I felt like my life was finally under control, I didn’t have to worry so much anymore.  However, in September of last year, I ended up having another seizure.  Once again, my heart broke in two.  After all that hard work, I was now back at step one.

Fast forward 10-11 months, and I haven’t had a seizure since.  I’m so close to celebrating my one year anniversary…  Again…  Hopefully nothing will happen until then. *touches wood*

I’m also determined to start driving again, previously my confidence definitely held me back.  I over thought everything and I was terrified whenever I got into the driver’s seat.  However, after spending a day with one of my closest friends, I was inspired and felt a strong urge to start driving.  I’m going to try and convince myself that being able to drive is a good thing!  My parents have also been very supportive, which means the world to me.  Knowing me, I’ll probably end up changing my mind but we’ll see…

Yes, the last four years have been challenging.  Full of highs and lows, but life isn’t perfect.  It doesn’t always go the way you planned, something happens and your life is suddenly turned upside down.  However, in spite of all that, I’m happy.  I’m surrounded by my wonderful family and friends, I graduated from college, and I managed to get my dream job.  I’m so grateful for the help and support I have received.  Now, I feel like I’m unstoppable.  If I can achieve so much, despite all the obstacles, I can achieve anything.  Nothing is going to hold me back. 🙂

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Sorry for the long post, but I hope you enjoyed it. ❤

If you would like to know more about Epilepsy, you can check out the links below.  They are full of information and are so helpful.

Epilepsy Action: https://www.epilepsy.org.uk/

Quarriers: https://quarriers.org.uk/services/epilepsyfieldwork/

See you again soon.

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7 thoughts on “Being Epileptic | My Story

  1. This was an amazing post! I may have been long but it was worth the read. I know someone who was recently diagnosed with Epilepsy so I might have to show them so they feel less alone about it 🙂 This is really amazing! Thank you for sharing.

    Liked by 1 person

    1. Aww, thank you. 🙂 I’m so glad you enjoyed it.
      I would be more than happy for you to show them, I can imagine how they must be feeling right now. I really hope they enjoy reading it, and please tell them they are not alone. ❤ xx

      Like

  2. Thanks for writing this, and letting me learn more! So glad you are seizure free now! I know it’s hard to write about challenging times, but I enjoyed this post and felt empowered reading your story! I appreciate you being so open; something I have to work on more, and this has definitely inspired me. Thank you for sharing your story.

    Arielle- littledismaid.com

    Liked by 1 person

    1. Thank you so much! You have no idea how much this means to me. ❤
      I was so nervous about posting it as I have never done anything like this before. I'm so happy you enjoyed reading it. 🙂 xx

      Liked by 1 person

  3. Seizures suck! I have been told I have non-eplileptic seizure syndrome. This all started when I was hit in the head by a locker door. My seizures are very similar to yours. I lose all awareness, my whole body on my right side jerks uncontrollably, and disgustingly I spit where my throat closes up. I awake not knowing what has happened, I just feel exhausted. Unfortunatly for me, there is no treatment, no pills I can take, I just have to “get on with it”. You are so brave for sharing your story. I’m glad you no longer have to suffer through them xx

    Liked by 1 person

    1. Aww, I’m so sorry to hear that. I’m so grateful that you shared your experiences with me, thank you. 🙂 I’ve been on medication for quite a while now, and they have definitely helped to control my seizures. Even though there is a chance I may have another seizure, I try not to think about it and just focus on living my life. 🙂

      I’m so happy you enjoyed it, and I wish you all the best! ❤ xx

      Liked by 1 person

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