Hey folks! Okay, rant time.
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.
Love you all!! xox