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Leila’s Ideas: Balancing Life and Epilepsy

Dancing the night away, one of my favorite activities!
Dancing the night away, one of my favorite activities!

I like to be able to do it all.  When I was younger, this meant being involved in multiple sports and activities, social groups, and keeping up in school.  Now that I’m older, it means working multiple jobs, meeting up with or hosting friends and family, and still managing to make time for myself.  Being busy makes me feel as though I’m living a complete life and that I’m accomplishing much of what I want to.  The problem is, sometimes I simply can’t.

Making a Choice

Last year, I began experiencing more migraines than normal.  I brought this to the attention of my neurologist, so we could figure out how to treat these episodes.  Through some discussion, we hypothesized that my increased pain was due to my many responsibilities. At the time, I was working 2 jobs and going to school full time.  My doctor gave me an order: keep 2 things on my plate at all times.  This meant quitting one of my jobs or quitting school.  I wasn’t about to leave my Master’s program, but I pleaded with her that I needed the money from both jobs.  She asked “Which is more valuable: the money you are making or your health?”  This hit me hard.  It was obvious that my health was more important; my budget could be adjusted to make up for the decreased income.  So, I quit one job and found my migraines decrease almost immediately.

Listening to My Body

This summer, I tried to test the waters.  I thought, since I had made it through the past year with relatively good health, that maybe I could kick up my activity level again.  I finished my schooling but, at one point, I was working 3 jobs and leading an involved social life. Unfortunately, I found myself in the same situation as last year.   The migraines came back with a vengeance.  My brain clearly did not like me spreading myself so thin–I was stressed and worn out, even if I didn’t think I was.  I am now forced to make the same choice I was last summer.  With some adjustments to my medicine and my schedule, my migraines are back under control.

Balancing Life and Epilepsy

Typically, I believe that I have more power over my Epilepsy than it has over me.  I don’t like to be defeated by it and I want to keep a “normal” schedule.  Yet the truth is that sometimes episodes, due to my Epilepsy, sideline me.  My body is affected negatively; I need to take a break when others without Epilepsy may not need to.  I can’t keep the same schedule as some of my friends because I have to manage my health.  And that’s okay.  It’s okay that my life has to be altered in order to keep myself healthy.  That doesn’t mean that Epilepsy has won, that I am weak, or that I am giving up a part of my life.  It simply means that I have different needs than other people.  

I’m still learning to adapt my lifestyle to my needs.  Even after having Epilepsy for so many years, I must remember that my needs change (and so do the needs of my Epilepsy) and I have to change with them.  Your needs may change, too.  Remember to talk to your doctor if you think changes in your life which may be affecting your health.  Listen to your body; it will tell you when you need activity and rest.  Don’t think that taking a break is allowing Epilepsy to control you; instead, know that it is you keeping it under control.

Your experience

Are there times when you have felt like Epilepsy controlled your daily life?  How did you deal with it?  Let me know in the comments!

Leila Shields
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Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.

  1. Emily Sian
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    Great writing as always, well done! x