@A MyEpilepsyTeam Member I’m so glad I’m not alone in this! The self-blame for being ‘weak’ is strong! This morning I decided I could carry at least 2 trips of stuff down 16 stairs in one load! Almost missed the last step and fell! And WHY? For WHAT? I guess sometimes I’m afraid if I stop, I won’t get started again!
I really like your idea of putting notes around like you do. It’s a reminder that I need, and seeing it in writing may really help! Thank you for that! And good luck to both of us in this REALLY REAL struggle! ❤️

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A MyEpile...

I am SO much in the same space as you with this. I've always tended to PUSH through everything in life. Always taking stairs 2-3 at a time by habit, carrying as much as possible in one trip, if I feel tired then I blame myself for being weak and take caffeine or something to try to push through it. Most of my life it has worked great - giving me success in everything from professional sports to business success.

But now --- I'm getting older, and still have seizures - so needless to say, this isn't smart behavior for an epileptic! I'm finally learning, putting notes up for myself saying things like "Who are you racing?" and such to make me breathe and slow down. Good luck to you! <3 I'm still working on it for sure!

@A MyEpilepsyTeam Member you are speaking my language!! I’m not saying that it’s better getting epilepsy very early in life… it ALWAYS sucks!! But when it doesn’t come until later, when you’re an adult, and you’ve already gotten a groove, it’s so difficult to hold back. You just want to be who you used to be. At my job as an engineering administrator, they used to call me Shoes because I ran to get things done! I’ve worked 24-hour shifts to meet deadlines before. To be able to concentrate on one thing now without a break, I can maybe do two hours, if it’s not hard work!
It’s nice to feel normal and not get that ‘broken, less-than’ feeling! I’m lucky that we have perceptive kids… my son and daughter-in-law both know how to say, ‘mom, go lie down!’ They see the signs before I do! We’re so lucky to have them, aren’t we?
And, yeah, we can push once in a while on good days! We just have to know when to ask for help… carrying an awkward bucket down cellar steps, taking heavy trash bags out to the curb, etc. it’s hard to do!! And also, just remember to rest on the bad ones.
Thank you for your encouraging words. It’s good to know I’m not alone. 😊❤️

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A MyEpile...

I do the same! If I'm having a good day I definitely push myself; as if i don't have epilepsy anymore. But then something happens. It's hard to not be who we use to be. It's like being broken, less than & I don't want to accept that. My daughter gets after me when I push. But pushing makes me feel somewhat normal & I miss feeling normal, strong without anything holding me back. I'll try the notes. Anything to help. We don't have to go all in & push like we use to. But I think it's OK to push just a little & I mean little. Like 2 trips with1 bag in each hand. It's OK to ask for help. I day at a time right💜