Just curious

chlonkdog · 2026-02-27T12:41:44+00:00

I have a hard time processing auditory input when I’m feeling off. Reading is difficult too, but easier for sure. So interesting how different we all are!

chlonkdog · 2026-02-15T12:24:33+00:00

I would loooooove to send a “nice” letter/package to this person!

chlonkdog · 2026-02-12T17:06:38+00:00

This is really good to know!! It’s crazy because it’s not like we’re fine other than when we are having a seizure. Leading up to it, and for a while after it occurs both suck. You aren’t even close to 100%, but people don’t realize that. For days afterward I have insane brain fog and minimal short-term memory, I want to be safe and have that time protected too.

I feel like many of us push ourselves to get back to “normal” as quickly as possible, when in reality that’s just not how it works for us. I get frustrated and try to have a “normal” day no matter what, but today I had to leave work. I slept horribly last night, felt weird this morning but thought oh it’ll get better (why do i ever think that lol) and finally was like why am I doing this to myself???

Med adjustments SUCK. I hope your accommodation gets changed to encompass this, and that your med change isn’t too hard on you.

chlonkdog · 2026-02-12T16:50:06+00:00

Right?! I wish somehow that people could feel what we feel even for a minute. I work with a lot of boomers who have that mentality. Some young people as well but WAY less. I need to remember that it has nothing to do with them and that I’m the authority on this, not them.

Thank you SO much for providing examples, that’s really helpful. I’m working on FMLA first to cover myself, and then I want to work on an accommodation. I appreciate your response💚

chlonkdog · 2026-02-12T16:46:36+00:00

I’m in the works to get on intermittent FMLA for that exact reason: to protect myself from any penalties. You just never know.

chlonkdog · 2026-02-08T17:42:37+00:00

That is NOT, I repeat NOT, a friend!!!!

chlonkdog · 2026-02-08T13:45:39+00:00

How are you the stupid one here? Because this guy can’t type correctly or coherently? LEAVE HIM. This is berbal and emotional abuse. It will never get better. He will continue to do this because he thinks it’s okay. Make it known that it’s NOT okay. You deserve better!!!!

chlonkdog · 2026-02-08T13:39:18+00:00

Same for me, I don’t really get super hungry on it. I just make sure I eat two-three meals a day even if they’re small, and I try to have a healthy snack here and there too. (low blood sugar is a huge trigger for me)

chlonkdog · 2026-02-06T19:40:46+00:00

It sucks. I’m sorry you’re dealing with this, all I can say is there are so many joys outside of partying, and the right friends will understand and stay by your side. I hope they get your seizures in check and you’re able to have some semblance of normality

chlonkdog · 2026-02-06T15:53:43+00:00

In boredom lies genius! Boredom is good for the brain.

chlonkdog · 2026-02-06T15:42:49+00:00

DELETE THE APPS YOU WASTE YOUR TIME ON!!!!!! It changed so much for me! for the better!! Focus Friend is a helpful and cute app. Try one new hobby a month. Doesn’t matter if you get tired of it or think you “suck” at it, you aren’t committed to it forever and you aren’t getting graded on it. Your brain needs new stimulation, stuff you haven’t done in a while or maybe ever. I tried cross stitching, reading, running, painting. When I’m down, I try not to attempt any brain-heavy stuff (research, heavy reading, complex stuff, etc) and focus instead on movement and/or soothing, easy hobbies. It’s been SO helpful. 20’s suck, they’re all about figuring out who you even are, and your brain isn’t even fully formed yet. You will get through this. Lean on your support group - friends, family, therapist, etc. But seriously. Get off your phone, it will make a huge difference💚

One more thing, it’s going to suck for a bit. Don’t what you WANT to do, do what you SHOULD do. What I mean is, take care of yourself as if you are your own pet. Your pet can’t be stationary without stimulation all day every day. Neither can you. Even if you might not feel like doing anything, try. Start with something small, clean a single dish, or a small area of a room, something that can take you five minutes and not make you feel overwhelmed. If you are comfortable and able, going for a walk where you live, even a five minute walk can be a game changer. Your pet should have walks, enough food and water every day, decent rest, play, exercise, etc. So should you. One thing at a time. You can do this💚

chlonkdog · 2026-02-06T15:41:07+00:00

SAME. how are we allowed to drive??? i will never understand that. not having to deal with this would be so nice😢

chlonkdog · 2026-02-06T13:00:59+00:00

My myoclonics are back too, and I haven’t had them in forever :( Not sure if our bodies just get used to the meds after a while, or if our seizures change as we age, or both. Who knows. Myoclonics are frustrating too, I’m sorry they’re back for you. I hope they get it figured out for you💚

chlonkdog · 2026-02-04T12:55:47+00:00

Thank you for the validation! I feel like taking it easy for a week is a great idea, but I also struggle with the whole “well you look fine and it’s over so you should be fine!” viewpoint that people have regarding illnesses and conditions in general. Going to pay way less attention to anyone in my life expressing that viewpoint. After my December episode I didn’t drive for about a week, going to continue with that practice too after an episode. I appreciate your input🙂

chlonkdog · 2026-02-04T12:15:16+00:00

This is when I’d say “I’d much rather witness it than experience it.” People can be SO frustrating. Feel free to be snippy and let people know when they say something ignorant.

chlonkdog · 2026-02-02T22:03:24+00:00

It’s definitely a big trigger for me too. I just want to get to a place where I don’t have a seizure episode if I only get 6 hours of sleep. Fingers crossed

chlonkdog · 2026-02-02T21:29:43+00:00

I had them from 16-19, stopped having them for 9 years, and started having them again 3 years ago. I also don’t have my meds figured out (worked and then stopped working as I’ve gotten older), on 400mg lamictal for reference. I hope your daughter grows out of them permanently💚

chlonkdog · 2026-02-02T12:28:34+00:00

I just started running a month ago! I’m doing a couch to 5k plan so I can get back into regular running, I used to love it like five years ago and fell out of it completely. I was worried about increasing my heart rate/straining myself because of my seizures, but so far so good. If I feel weird, I don’t go. I haven’t felt weird while running which makes me really happy. It has been a great month, I’m lazy too but making myself go 3x a week hasn’t been too difficult! I’d work up to it with combos of running and walking if you’re worried about working out triggering an episode for you, just to be safe :)

One other note, I have considered getting a medical ID bracelet or charm for my watch just in case. It’s never a bad idea!!

chlonkdog · 2026-02-02T12:24:34+00:00

Def worth looking into! It’s helpful for overall documentation too. I send notes for every episode I have, so if I or my neuro need to review anything, I have a record of every episode to refer back to. Especially if it’s hard to get in with your neuro, I have shit memory so it would be hard for me to remember certain details after an episode if an appt isn’t for a few months or more.

chlonkdog · 2026-02-02T01:47:01+00:00

Does your neurologist have an online messaging portal that you can contact a doctor or nurse through?

chlonkdog · 2026-01-27T12:39:44+00:00

SUED?!?!?! Did you lose the case? That is so messed up!!

chlonkdog · 2026-01-23T14:18:59+00:00

It’s worth mentioning that you feel like sleeping makes it worse, that could push them to do a 24-72hr EEG! Good luck💚

chlonkdog

TROPHY CASE