A Day in the Life of Someone with Epilepsy

Hello, everyone.

Today’s post is written by Ariel (formatted  and edited by moi), a courageous American woman living with Epilepsy. I would like to thank Ariel at Different Frame of Mind  for collaborating with Brains & Bodies to share an insight into what it is like for someone to live with this condition.

Ariel and I believe it is important to increase awareness of illnesses to try and improve how they are understood and perceived.

For those of you who don’t know much about Epilepsy, in simple terms it is a serious brain disorder which causes seizures. Just in the U.S, on estimate 2.5- 3 million people are diagnosed with Epilepsy (Health line, 2014). The type of seizures and frequency vary from person to person but may be attributed by similar factors such as; flashing lights, tiredness, not taking medication and stress. Some patients, do not know when seizures will arrive, which has a significant impact on their lives.

Now, that time has come to leave you in Ariel’s safe hands.

Over and Out.
my name


A Day in the Life of Someone with Epilepsy

One day I woke up and my mother was staring at me like she had never done before. I mean one of those stares that have you worried from the start, I was in the 3rd grade mind you. At that age you understand what is going on, but not to the full extent when you should. I repeatedly kept asking my mother what was wrong while she was crying.

She then told me that she believed I had a seizure in the idle of the night, as I was shaking uncontrollably for a few minutes. Which lead her to calling and scheduling me an appointment to see the doctor, more specifically a neurologist. When I received the news that this had happened to me, I simply accepted it and went on wondering what was happening to me. After doing an EEG, the doctors informed my parents and me that I had a condition called grand mal seizures, absence seizures and later on I would discover that I also had a sun sensitivity condition.

       Try telling all of that to a 3rd grader and see what they say.

brain

The doctors put me on some medication, but they said it was the dosage they would give to a 2 month old baby. I began to ponder why I was taking it in the first place. I did not have my next seizure until I was in the 5th grade, this was when I felt a shift in my entire life. I was typing up a report for school, when the computer caused me to have a seizure. I cannot tell you what happened. I can only tell you what others said happened around me. I woke up in the hospital with a cut on my throat, a knot on my head and a hurt tongue.

I was devastated and felt out of place, it had finally dawned on me that I was no longer a normal kid. When I returned to school, all of the other students judged me and made fun of me. I thought, “Great I have to spend the rest of my time at this school known as seizure girl.” Even the girl I fell on was afraid of me, from that point on I felt not normal, misunderstood and not accepted by society.

My entire life revolved around making sure I got enough sleep, to making sure I wore sunglasses or a hat etc. I had another seizure in the 7th grade and did not have another until I was 20. I spent most of my high school years not telling people about my seizures unless my mom made me hand my teachers a handout on what to do if I had one. I was completely devastated doing that, but I knew it had to be done for my protection. I tried out for track my freshman year, but ran into a dumpster and about broke my arm due to my sun sensitivity.

Sun sensitivity causes me to wave my hand back and forth in front of my eyes, looking almost as if I am brushing my hair back. I have zero control of my body when this happens, which means I could walk in front of a car without knowing or not see something and trip. I have had a few seizures caused by this. Which brings me back to my seizure when I was 20. I had just embarked on my first vacation with a friend but without any parental supervision. We finally arrived in Myrtle Beach, South Carolina and checked into the hotel. I knew I should have taken a nap since I barely got any sleep, but I was way too excited to see the ocean.

The bright sun shines on a blue sky background.

About 20 minutes into the vacation, I fell over on the beach and had a seizure due to my sun sensitivity condition. I woke up in the hospital, without anyone around that knew about my condition. My friend was supportive, but you could tell the friendship between us had changed. I wanted so badly to give up the vacation and just go home.

My mother talked me out of it and I ended up having a wonderful time. Although I do not have seizures as much as many people do, I still live with seizures. I still feel out of place and wish that I was normal. I love sitting out in the sun, but I have to find ways to shield my eyes from the sun. Instead of letting it get me down day in and day out, I find ways to learn to cope with it. I used to let seizures stop me from doing things that I wanted to do.

Now that I am older, I understand my condition better and find ways to control, deal and cope better with it compared to when I was younger. A medical condition only defines you if you let it. I still continue to work full-time and live my life to the fullest. My biggest piece of advice to anyone recently or in the past diagnosed with epilepsy is that there are others out there that understand it. I felt so alone, but you are never alone. Also do not give up on life or let the diagnosis define you, there are always ways to cope with this.


  About the Author

ariel

My name is Ariel and I am the creator of  Different Frame of Mind  blog.  My blog focuses on travels with little funds, medical and psychological disorders. I was born in Kansas, but currently reside in North Carolina. I am married and have two wonderful puppies.

I am a bucket list traveller and have plenty to still check off. I have been on a cruise, travelled to 34 different states, swam with the dolphins and so much more since 2010.

Join me on my journey on one of the social media links below.

Pinterest

Twitter

Facebook

Instagram

Xoxo, Ariel


Sharing is Caring 

We would love if you shared this post to raise awareness of what it can be like to live with Epilepsy.


Resources

Have you or know someone who has been recently diagnosed with Epilepsy? 

 Epilepsy Action  helps Epilepsy suffers learn how to manage their condition better. The accredited course costs £40 but can be done in an environment whereby you feel comfortable and lasts 8 weeks.  I (Morgan) think this is great to give you or a loved one confidence in managing the illness.

Epilepsy does not just affect the patient.  Epilepsy helpline can provide the patient or carer with emotional support if you are having a bad day.

Telephone number (U.K) 01494 601 400*

                                             * Check the website for opening times.

E-mail Helpline@epilepsysociety.org.uk


References 

Epilepsy Action Learning. 2017. Epilepsy and you | Epilepsy Action Learning. [ONLINE] Available at: https://learn.epilepsy.org.uk/epilepsy-and-you-june/?gclid=EAIaIQobChMI5batouLh1gIVwZPtCh2XKQfCEAAYAiAAEgJSr_D_BwE. [Accessed 08 October 2017].

*Epilepsy Society. 2017. Epilepsy helpline | Epilepsy Society. [ONLINE] Available at: https://www.epilepsysociety.org.uk/epilepsy-helpline#.Wdp_IFtSzIU. [Accessed 08 October 2017

Healthline. 2014. Epilepsy: Statistics, Facts and You. [ONLINE] Available at: https://www.healthline.com/health/epilepsy/facts-statistics-infographic. [Accessed 08 October 2017].

28 comments

  1. Thank you for sharing your story. I can’t begin to imagine what it is like, especially not knowing when you will have one, or not having control of your body. It is awesome you are getting out and not letting it control you though. I saw you have been to 34 states! That is very cool. And you are brave for sitting in that glass box (from your picture). I don’t think I could do it and I wouldn’t even consider myself afraid of heights =)

    Liked by 1 person

    • You are welcome! It is hard to not know when I will have one. This has created a fear of the unknown but I beat it with travel. Everywhere I go is part of the unknown, but eventually I figured it out and I become happy. And yes! I have been to 34 states. I’m excited to see all 50. That was probably one of the most out there things I have done sitting in the glass box. If you ever go to Chicago it’s totally worth it. 🙂

      Like

  2. I’m so glad you shared your story! I’m also glad to read that you are not letting your condition define your life. My uncle has had seizures and it’s scary. I can’t imagine that at such a young age!

    Liked by 1 person

  3. That is a lot to deal with as a child…the physical things to worry about and not knowing why or when it will happen. We have seen people in public having seizures and everyone rushes to help and doesn’t think it is strange. Everyone has their “things” that they deal with. You are dealing well with yours.

    Liked by 1 person

    • It really was a lot to deal with as a child. The unknown was what truly scared me. I had to learn to be a child, as well as cope with my disorder all together. I’m amazed by people who rush to help. Help is always appreciated! Thank you for your support!

      Like

  4. I’ve known people who has epilepsy and it’s really something that we should understand better. I’ve seen people turn their backs on those who have it, and I never really knew why. I think sharing a post like this will help raise awareness.

    Liked by 1 person

    • Thank you! I hope so as well. I feel as a human we turn our backs on things we don’t understand. A lot of people don’t know what they don’t understand. Or some are scared of what happens to a person with seizures. Some people turn their backs on stuff they are afraid of. Thank you for your support! I really appreciate it!

      Like

  5. wow its difficult to understand what its going on someone with epilepsy and its easy for me to say, you must bring the good from your experience, but being in your foot is very different. Not everyday its a positive one. Thanks so much for the effort and time you took to raise the awareness, we tend to judge without being emphatic but this post for sure will help a lot of people to focus on being careful, patience and loving if there is someone with epilepsy on the family. God bless you.

    Liked by 1 person

  6. The message communicated here is that we must not allow adversity on any guise to define us. You have earned your stripes as a result of a long journey. By sharing you have humanized the face of this disease . You are to be commended for making yourself vulnerable In order to provide enlightened perspectives .

    Liked by 1 person

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