What does it mean to Live Well with Epilepsy? In an ideal world, there would be no epilepsy to worry about. But as it is, epilepsy is a fact of life. It is our challenge to live with it as best we can. Over the years, I have discovered a few tips that help me live well with epilepsy.
As a person with epilepsy, I wish I could be seizure-free. That is, I suppose, anyone’s hope in my position. Right now, I am seeing a seizure reduction, but I don’t want to jinx myself by saying I’m on my way!
The truth is, I still have short seizures almost daily, and just the other day, I had a big, complex partial seizure at work which incapacitated me. I could not respond to my coworkers. Understanding people and not being able to reply was extremely frustrating. When I finally recovered, I was ready to get back to work but knew better. I had to go home and rest. My mother picked me up and drove me home. My big mistake was that I walked to work. I thought it would be good to get some exercise, and the temperature was in the low 80s. However, the heat was enough to trigger a serious seizure.
So, how do I try to live well with epilepsy? Here are 5 tips you can try to live well with epilepsy.
5 Tips to Live Well with Epilepsy
1) Develop a strong support system
This can include family members, doctors, support groups, friends – it really doesn’t matter who is on your support team as long as you feel lifted up by all the members of your team.
I am very lucky to have all of these. I have been through a lot of ups and downs, and my family, friends, and epilepsy support groups have been there. My doctors have been incredible, trying everything and thinking outside the box. I’ve tried treatments I never thought I would ever try. Now, I have the RNS implant.
2) Maintain a regular schedule
Living in moderation like this can be difficult especially when you are first diagnosed. But I’ve found it’s worth it in the end. This includes having good eating, sleeping, and exercising habits. It goes without saying that you must take your medications regularly. Every morning and evening at 9:00 I take my meds, and in the evenings I perform my wanding ritual for my RNS.
3) Minimize stress levels as much as possible
The pandemic and global politics have shown us that keeping stress low is not always possible. But finding ways to manage stress when it comes is an important tool for everyone living with epilepsy. Learning to make use of breathing and meditation techniques can be especially helpful.
I always do a morning meditation when I wake up. It refreshes me, and gives me hope for a seizure-free day (until I have one later in the day). Breathing in itself is very important to keep yourself centered and not to get caught up and react automatically to negative stimuli. I have to remind myself of this.
I also find that if I feel an aura, often I can stop a full-blown seizure from coming by consciously breathing, taking a big inhale and exhale.
4) Slow down
This goes hand in hand with breathing and meditation and with life in moderation. Since you are slowing down, you are doing things purposefully and not automatically. However taking things slower than you would prefer can be frustrating and annoying. Be patient with yourself, learn the limitations of your body, and try to adjust so you can better listen when your body is saying “STOP.”
5) Play relaxing music
This is one thing I cannot do without. Whether it is listening to the radio, a CD, or playing the piano myself, music is very soothing. This doesn’t have to be classical music. If 80s rap, 40s jazz, or 60s French pop chills mellows you out, then have at it.
So, right now I am not expecting seizure freedom. Rather, I am taking it one day at a time, trying to remain aware of my triggers and hoping that I don’t have a seizure. But if, and when I do have a seizure, that’s how it goes.
Despite having seizures, I have much to be thankful for. My support system really makes the whole thing work. I am able to live well with epilepsy by following a regular daily schedule and lower my stress level. I hope others can do the same.
Soo Ihm lives in Southern California and writes Soo’s Epilepsy Corner to educate and tell her personal story.