Adapting to Life With Epilepsy

My seizures started my sophomore year of college when I was involved in different clubs and organizations every day of the week, beyond just my studies. I was in the gym multiple times a week and stayed constantly active with hiking.

So when my seizures first started, I had it in my mind that they were not going to change the way I did things. I tried my hardest to stay involved in everything as if nothing had changed. I had it in my mind that if I did not change my lifestyle then maybe – just maybe – I could just ignore the seizures.

I couldn't ignore my seizures

That mindset lasted me a few years, and more than just a mindset, it was pure stubbornness. Stubbornness that ended up with more hospital visits than if I would have just listened to my body, more flare-ups, more chaos. All because I had no idea how to balance my old life with my new life.

I started having seizures at 19 and I can honestly say it wasn't until I was in my mid-20s that I finally learned how to combine and balance the life I wanted and my epilepsy journey.

I had to start by changing my mindset that epilepsy was just a blip on the radar and that ignoring it could change anything. And then I had to change my perception of strength and teach myself that rest days were equally important to my body as being active. I also had to teach myself what limitations I needed and what to be cautious about.

But can you live a normal life with epilepsy?

There is no playbook when being diagnosed with epilepsy. There is the advice to not drive, to not take baths, and to not go swimming (alone). But in reality, our epilepsy affects so much more than just those activities. Epilepsy affects your body from the moment you open your eyes to the moment you close them. Every activity you do brings some risk.

It's important to lay out the risks and decide for yourself if the activity you wish to perform is worth it, and if it is, can it be modified to keep you safer.

It's all about adapting!

For me, I love hiking. I absolutely love reaching the top of a mountain no matter how many miles it takes to get there. Now I still go hiking but I have rules set in place for myself. I do not hike alone, whether it be a mountain or a trail. I make sure to stay hydrated even more so than I used to. I remind myself often that taking a break on the trail is not a defeat because I still make it to the top but sometimes it may just take me a little bit longer.

I gauge how I am feeling before I even leave my house and if I am having any sort of auras or feeling "seizurey" I put the hike on hold! Another important rule I set for myself is if I have had a seizure in the last 24 hours of the hike I will not go! My body needs time to rest and recoup after a seizure and going on a hike, even a small one, is not the best way to allow healing.

Whether you are into sports, baking, or the outdoors, there will be adjustments you have to make in your life once your seizures begin. And that is okay! Adaption is important!

Taking seizure precautions

If you like cooking, it's important to gauge how you are feeling first. Then set up an adaptive space! Sit while cutting vegetables, use the back burner when using the stove, do not cook if you are home alone, always point the handles inward.

When they told me I couldn’t take a bath I was honestly crushed. I love baths, especially after a long day. So instead of completely surrendering to the idea that I can never take a bath again, I set boundaries. If I am home alone taking a bath I am extremely cautious on how I am feeling. I do not fill the tub up deep enough for submerging. I will not stay in for a long period of time and I will not allow the temperature to get so hot that it triggers an autonomic response.

Now, if someone is home with me, I call fair game! I allow myself the freedom to take the hot bath with the tub filled all the way up because my significant other or family members who are home have their own set of boundaries for me being in the tub. They check on me often and they can tell me to get out at any point and I will listen because the majority of the time they can tell I am not feeling well before I can.

Living a full life with epilepsy

There are so many accommodations that can be used to allow yourself to continue doing the things you enjoy! You just have to take a step back and really think about what will work best for you and how to implement them. You do not have to change your entire life, you just have to adapt!