6 Reminders for Families Learning to Live with Epilepsy

As part of our commitment to sharing about epilepsy every November, we are making a video this year. There was too much info to fit and this is something I thought might be a good blog list.

Our list of reminders for families first getting accustomed to fighting this battle.

1.  Face the monsters. Don’t be afraid to let others see epilepsy. It’s hard, but it’s also a powerful way to get people to understand you need their support. A very brave woman has a TED talk about how we each have a closet we are afraid to come out of. I think as parents we feel vulnerable opening up to others because it feels like we’re admitting we’ve failed as parents, because we can’t fix this problem without help. Don’t be afraid.

2.  Get organized. We are drowning in mail, appointments, bills… it never ends. We have a digital and a paper system, and since neither is perfect, it makes us feel better to have both. But this is one that I cannot seem to overcome. But I think if you can start out more organized you won’t get buried like we have. So again, let people help you. Especially someone who doesn’t carry the weight of your problems, so their head is more clear.

3.  Find your inner-Yoda. Patience is required in so many ways. Especially when it comes to answers. They could change weekly, don’t get too attached right away. But they can also drag on way too long, leading your minds  to the worst places. Stop before you go there. Patience will definitely save you some angst along the way.

4. Beware the Web. Don’t read too much, but do educate yourself. There is a fine line with the Internet calling your name… It will torture you if there is unknown like there has been in our case. So read some basics to be able to ask more questions of doctors, but don’t join too many message boards unless you are sure of a diagnosis.

5. Think and act like an All-Star team. Caring for an epileptic person requires teamwork. Make sure everyone who wants to feel involved has a role. Find your balance and find a way to stick with it. You lose your routine and it’s so hard to get back that rhythm. But reality is change will come, so be ready to roll with it. We like having a Plan B ready for that “just in case” moment.

6. Give yourself a break. We are exhausted all the time. Even on a good day, we realize the emotional toll tires you out in a way that no amount of sleep really can resolve. But quiet time for your brain does refresh you. Find your release and make sure you do it every once in a while. Read, music, playing outside, exercise, you name it. My writing helps me immensely.

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