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Epilepsy Blog Relay™: Chantal on Epilepsy in Everyday Life

This post is part of the Epilepsy Blog Relay which will run from November 1 through November 30.  Follow along and add comments to posts that inspire you!

Chantal’s Story

Epilepsy in everday life, I think we all know it’s not always that easy. But you can make a difference in the perspective on how you look at being diagnosed with Epilepsy. And whether or not you let Epilepsy control your life.

Couple of months ago I wrote another blog, because I noticed some of my followers are from overseas.  I’m from The Netherlands, so my blogs are in Dutch. Feel free to read: Epilepsy | Electric Superpowers

As you might have read in my other blog I have a VNS, for almost a year now. The settings of my VNS were modified multiple times in the last couple of months. It’s still not really working for me yet, so my Epilepsy-counselor and I are still looking for the settings that will hopefully give the results we want!

If we find a setting that works, it will change my life! I still have 10-15 seizures a day. For those who are familiar with VNS, you know that it comes with a magnet. I have not had the chance to try it out as often as I want, to be sure it really works with the Tonic-Clonic seizures. But the times I have used it, it seemed to reduce the seizure a bit. Which is a good thing!

A letter to my epilepsy

I think it’s important to make ‘fun’ of Epilepsy. So my blogs contain humor, sarcasm and self-mockery. It sure helped me to accept all of this. I often write ‘letters’ to my Epilepsy, so I choose to do the same for this Epilepsy Blog Relay.

Dear Epilepsy,

You blew away several certainties in life. I am fighting this battle now for almost nineteen years. You force me deal with you every single day. But I won’t put the blame on you, you are just being you. Doing what you do best. But you, dear Epilepsy, should not take me for granted. Accepting you the way you behave, you should be thanking me for the way I treat you and deal with you.

I won’t lie to you that I sometimes really hate you. You have a lot of power, but it’s a waste of time. Because I not giving up to find a good combination with medication and the VNS that I got implanted specially for you, close to my heart. I will keep you company. And if I could I would wrap my arms around you. Instead of being in my brain with your electric superpowers, I would put you under my skin to keep you warm.

You have these sudden moves, but they don’t scare me anymore. So welcome to my life, accepting you for what you do.

It took me a while, but I have found a way to cope with your flaws. I embrassed you. I know that you are here to stay. But you, dear Epilepsy, never will have a hold on me.

With love,


READ THIS IN DUTCH: Be sure to check out this post today in Dutch on Chantal’s site http://levenmetepilepsie.com/ LivingWellWithEpilepsy. For the full schedule of bloggers visit the Participants gallery.

img_06192NEXT UP: Be sure to check out the next post tomorrow by Abby Gustus-Alford. You can find her post at https://livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.


DON’T MISS IT: Don’t miss your chance to connect with other bloggers LIVE on the #LivingWellChat on November 30 at 7PM ET.