Rant Time!! Change is Needed in The Way we See Seizure Free Days!

Hey folks! Okay, rant time.

grumpy bear-753475

I have been part of the “epilepsy community” for the past four years now (prior to that I never needed support for it) and I have noticed one prominent, bulging thing: people mark their seizure milestones of a couple months, years, etc.

I think that this is great, because if you have serious seizures to the point where you can barely go anywhere, this is a huge milestone. You have a new life! There are many young children who have uncontrolled seizures, so when I see the 3 year or 3 month milestone poster for a little girl or boy on my Facebook, it makes my heart melt with joy. I just hope for them that they continue in that direction.

But here’s the thing with me. If I am let’s say, one month seizure free but then have one bad day of 5 seizures, does that mean I have to start from scratch? I have talked to my health professionals, and they have deemed me pretty healthy because I am out and about living my life with ease. Yes. I still can’t work. See below.

So could we perhaps in some cases focus on the quality of our lives rather than the number of seizure free days? As a true hard perfectionist (not fun I guarantee you) I feel like I have “failed” my health when I have a bad day. So I would really really like it if people got on board with the idea of quality of living versus the number of days. I am sick of counting days, I lose track, and people always get disappointed when I say I was a month seizure free then had a bad day. I also feel depressed from the seizures. So let’s try something new.

Rant over.

Love you all!! xox

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2 thoughts on “Rant Time!! Change is Needed in The Way we See Seizure Free Days!”

  1. I understand what you’re saying, but I think the ‘days’ thing is, for some of us with ridiculous notions of somehow one day getting back drivers licenses, relevant.

    Today for me is a hard one as I’m back to day zero and I’m being forced to accept, for the umpteenth time, that I’ll probably never drive again. I know it’s not the be-all and end-all, and I have accommodated better than I thought I would, when I lost it eight years ago, but it’s that slice of independence that it steals from you, that I don’t think I, at least, will ever stop wanting back.

    For the most part though, I try not to dwell on living with this damn inconvenience. I feel down today, but I’ll use that to propel myself to greater things in the gym. Get up, get on and fight, is always my motto. Things could be a lot worse.

  2. Hi! I’m Megan, editor of TheMighty.com. We’ve recently started an epilepsy awareness initiative on the site and in looking for epilepsy bloggers, I stumbled upon your blog. I particularly love this post because you’ve put into words a sentiment a few of our bloggers have echoed to me. If you’re interested, we’d like to republish this on The Mighty (linking to you, of course). If that sounds like something you’d be into, can you shoot me an email at epilepsy@themighty.com? Hope to hear from you. Either way, thank you for sharing your story. All my best, Megan

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