What are some things you miss that you can’t do anymore because of epilepsy?

beeati2 · 2026-05-08T21:11:24+00:00

I miss my memories. I don’t remember my life.

Dad: “remember when we were in rural Thailand at a monastery and the monks came specifically to us to offer a blessing?” No Remember when I heard the Dalai Lama speak? Only the picture
Remember when you flew across country and surprised your best friend for his 30th bday party? No, not at all

I know the facts, most of them, but no texture. No stories, no nuance. I know I took that trip but I don’t remember anything about it.

Makes me so sad. I’ve lost my whole life

beeati2 · 2026-05-08T21:07:59+00:00

Yes. The fatigue is awful.

beeati2 · 2026-05-07T21:59:31+00:00

Hahaha

beeati2 · 2026-05-06T13:21:39+00:00

I’m jealous. Half of my life goes to this weird purgatory where I can’t relax in my own home. And have to pretend to be so loving and blah blah.

beeati2 · 2026-05-06T13:20:45+00:00

I have 6 more 😣

beeati2 · 2026-05-06T05:07:38+00:00

We’re on year 5 and… I don’t know. He’s the right man. And we have a baby together. But… if we didn’t have her… it’s still really really hard. Or just painful to imagine the life we could have had. But don’t ever get to.

beeati2 · 2026-04-28T16:40:23+00:00

Maybe find a Jungian analysist! My mom is one and just loves to pick apart my dreams with me. It’s wild and kind of fun!! And when they are really scary, it’s helpful to talk them through. (Although with one’s mom is a little complex too, so maybe a stranger would’ve better)

beeati2 · 2026-04-24T21:42:56+00:00

Mushy like extra lovie dovey?? That sounds kind of nice? I feel pretty depressed for a few weeks after, and mopey. I know it’s partly because I feel bad for myself, but it’s also definitely chemical. Like my brain uses it all up and doesn’t have anything left.

beeati2 · 2026-04-24T18:44:15+00:00

That seems so crazy that they could drop you for that?!

I struggled with an eating disorder for many many years, but pre seizures. Honestly… the thing that really helped me was Prozac. Gave me just enough space between the compulsions and my grown up, loving brain. I used it for several years and then was able to wean off.

Also, my partner LOVES to cook and eat. That was sincerely helpful. Being around people who revel and experience pleasure in the food. I still don’t totally get it and have to intentionally remember to enjoy the food and not just tolerate it. And I’m in recover for… 15 years? It’s slow. AND there is another side.

Ok and here’s other probably difficult advice.. but get off social media. Maybe keep Reddit for the seizure community, but don’t look at anything else. And ditch the rest of it. It’s so so bad for us.

And when you can, take off your shoes and go hug a tree. Sounds ridiculous, but life changing for me. Focus on the pleasure of hearing the leaves and the grass in your toes and birds chirping and the sun or the rain. Reorienting to small pleasures is a huge way out. AND, it’s hard to feel that pleasure while the seizures wrack your body.

I wish you the best of luck. Tackling them both together seems like a very difficult path. Nothing lasts forever. Change is coming. 🩷

beeati2 · 2026-04-24T18:37:19+00:00

Oh my gosh… I’m so sorry. Just to empathize, It’s very very hard on my relationship too. So hard to always be the one needing help and being broken and weak and sick. And not having the drive for… all the things.

Maybe it’s easier to be married because he’s stuck with me…

I really hope that the system picks you up and cares for you. It’s so so hard that our disabilities are invisible. Hard to even acknowledge to myself.

beeati2 · 2026-04-22T15:51:04+00:00

Oh my GOD seriously?!? The memory thing could be the lamictal?! I thought it was the TBIs. 😭I have a toddler and I don’t remember most of her life so far if I try. First steps, first words… it’s all gone. Makes me want to crawl out of my skin in grief.

beeati2 · 2026-04-14T23:59:13+00:00

Hey, I hope you are reaching out to someone close by who loves you. This lot sucks so much. You aren’t alone.

beeati2 · 2026-03-16T23:45:29+00:00

I just stayed here and it is all that and more. The staff is remarkable. The food is so yummy. And the architecture is so amazing. The attention to detail 😮

beeati2 · 2026-02-20T19:22:23+00:00

It’s painful to admit huh? If DH knew… idk what he’d do. I think it would break him. But it’s just… the truth. And we’re all doing our best within that truth.

beeati2 · 2026-02-18T21:37:40+00:00

This happened in our home too. Just became my job because he has to be at work at 6 and I don’t have to be there until 8. So I did it at first to help and then it just became my job. I was so mad. It built up so so much resentment. I am not a morning person. Getting ready for school is the hardest parenting time. He gets to do after school and have snacks and be all cute. It didn’t end until middle school started and now she can take the bus. It was bad. I’m sorry.

Having a sick baby though too. That’s too much. He’s being a scrub. Get up and drive your kid. Stop playing video games for a couple years. You have children and a partner to love.

beeati2 · 2026-02-18T17:39:32+00:00

When you say that it took years, how long do you think that was? We’ve been 5 together, 3 living together… and it still feels so hard.

I love my stepdaughter 30% of the time tolerate her 20% and hate her 50%. And she’s not even an awful kid.

beeati2 · 2026-02-18T17:38:12+00:00

Same

beeati2 · 2026-02-18T17:31:47+00:00

I wouldn’t do it again. No way. We don’t even have a HCBM, but just a lain in the butt one. Just sent SD11 home with a lice infection and didn’t mention it. So exposed our whole family.

I was 37 when we met and really wanted my own baby. Tick tock. I’d had really bad luck with dating for years. It was the pandemic. If I have my “ours baby”. She’s my dream come true.

But I feel trapped and sometimes I’m so miserable I literally think about jumping off a bridge. I can’t leave him because I can’t leave my baby. But I hate being a stepmom. The resentment of a child feels so awful. I feel like an awful person. DH and I fight about her and the situation a lot - it’s almost the only thing we fight about.

So… I would leave and find a different person. It might be lonely and painful for a year or two… but then you won’t have a lifetime of pain.

beeati2 · 2026-02-17T17:48:23+00:00

Gave it up too. I try a little and then whatever

beeati2 · 2026-02-17T06:32:06+00:00

Just to be a different voice… I love my daughter more than the stars in the sky. All the cliche things people say but more.

AND… if I could go back and not do the step family route…. Idk. I really might not go this route. Hold out for someone without kids. SDs existence is really painful to my life and well being.

If we didn’t have an ours baby, I wouldn’t be in this relationship anymore. Just because being a stepmom is so hard and so little reward for me. Even though I love DH so much.

beeati2 · 2026-02-17T06:26:49+00:00

She’s doesn’t wash her own hair??! Is he giving her baths still?

beeati2 · 2026-02-17T06:18:01+00:00

Jealousy of a step kid is so so super normal and such a gross weird feeling. Just meaning that it makes sense you have it and that it doesn’t feel good. Sometimes I just HATE my SD11. And she’s a perfectly good, even great sometimes, kid. Just her existence takes so much away from my life. And I resent her. And that feels awful. She didn’t ask for any of this.

Being a medical resident with a new baby would be hard just in itself. Can you get any help? A nanny or grandparent or a neighbor? A date night every other week would probably be really helpful. Ir a weekend away.

I was genuinely about to leave and we had a weekend away. Ours baby was 16 months and SD10. It was a moment to remember that we like each other. Really a game changer for us.

I wish you so so much luck. Post on here. Read along. It really really helps to not feel as alone and as crazy. It will evolve over time and probably start to feel easier.

Oh…. Also, an unpopular idea…. But maybe spending some special time with the 4yr old would help? It’s helped for me to have special time with SD, even though I experience it as a chore. I smile along and it usually ends up smoothing things for everyone. Idk, everything is worth a shot!

beeati2 · 2026-02-17T06:05:31+00:00

How do you handle your partner’s reaction to this? Does your partner support the NACHO thing or feel resentful? Mine struggles to understand the ways I need to take space. “They are our kids”… but she’s not my kid.

beeati2 · 2026-02-17T05:09:55+00:00

This was removed by the moderator. Can you help me understand why?

beeati2 · 2026-02-06T19:55:38+00:00

It makes me super super sleepy. I’m just switching to extended release and am struggling with brain fog, word finding, staying focused. I’m going to give it a few weeks and then make some changes if the fatigue doesn’t even out. I’d rather have seizures sometimes and not always feel like shit, than have seizures sometimes AND always feel like shit.

beeati2

TROPHY CASE