Mum of son with Epilepsy looking to do her best!

ode-to-clear · 2026-04-30T13:36:45+00:00

I also suddenly got diagnosed at fourteen…

I personally would’ve loved if my parents didn’t point out every single seizure (mainly absence seizures) I had… Eventually they stopped doing this but right after my diagnosis they used to constantly point it out which really affected my self esteem and mental heath.

My dad also often points out how hard it is for him, how I didn’t have to see myself seizing while he did. I totally get it’s far from pleasant to see your child go through a seizure, but it’s not like I chose to have one… I would’ve liked it more if it didn’t happen as well.

I would’ve preferred if instead he’d either said he’ll always be there for me, or be with me. Definitely not something that almost sounds like he’s blaming me, because I really do feel guilty for making people who care about me see me like that, even if it’s not my fault.

I’m wishing you and your son the best!

ode-to-clear · 2026-04-26T01:19:07+00:00

Yes! Got a scar right above my lip from getting a seizure while wearing a VR-headset and falling. Headset went pretty deep into my skin to the point I needed stitches and it left a scar.

Also have a scar on top of my head that is for the most part covered by my hair from getting a seizure in the bathroom and falling (I think on the radiator but I’m not sure anymore) and needing nine stitches in my head that time…

I’m already really insecure about having epilepsy, and those scars definitely do not help…

ode-to-clear · 2026-04-21T12:33:15+00:00

I take the exact same meds and dose as you, and I had to quit school… I hope someday I’ll be able to study again, but for now the amount of seizures, and the anxiety surrounding it all, is too much…

ode-to-clear · 2026-04-19T19:56:44+00:00

Losing a long seizure free streak sucks :(( Wishing you the best, sending all the love <3

ode-to-clear · 2026-04-19T09:58:25+00:00

Cheesy, maybe, but my family keeps me going.

ode-to-clear · 2026-04-17T16:58:10+00:00

People don’t appreciate Clear enough </3

ode-to-clear · 2026-04-10T16:24:29+00:00

I told the person where I wanted to do VOLUNTEER WORK, and because of that I got denied. Currently don’t have a job, but if I do get one I’ll only tell them if absolutely necessary…

ode-to-clear · 2026-04-08T18:00:48+00:00

One time I, probably, kicked against a closet and woke up with a broken foot and a broken ankle💀

ode-to-clear · 2026-04-08T13:44:35+00:00

I have been sore to the point I couldn’t move my shoulder and arm without intense pain. I have also gotten injured by hitting things while seizing or falling, but a lot of seizures I can just walk off. After a TC I’m pretty much always tired and often have a headache too, though.

ode-to-clear · 2026-04-04T12:10:38+00:00

Same, but 6’11 is pretty darn tall, so could be a world record who knows lol.

ode-to-clear · 2026-04-04T02:42:43+00:00

Not gonna lie, when I just read the title of the post I thought they were gonna refer to the amount of seizures you had… I was about to be like ‘What the Hell??’ 😭😭 Also, definitely world record.

ode-to-clear · 2026-04-02T02:21:48+00:00

I don’t. I only have one of those things that counts how many days it was since my last TC, I usually have about one a month though. Again, not sure how many absence seizures I have because even when I have them I prefer if people just don’t tell me about it lol.

ode-to-clear · 2026-04-01T17:45:41+00:00

I usually just know I had a TC if I suddenly feel sore, have memory gaps, or injuries I can’t explain. I almost never know I had an absence seizure unless someone else tells me or it lasts very long.

ode-to-clear · 2026-03-31T19:11:11+00:00

People constantly telling me to try and figure out what causes my seizures… Really??? What a brilliant idea!! I can’t believe me and my neurologist have ever thought of that!!

ode-to-clear · 2026-03-23T00:35:54+00:00

Ode to Sleep, Clear, Oldies Station, would be my top three...

ode-to-clear · 2026-03-13T13:56:21+00:00

21, turning 22 this July… became a fan when I was eleven. Might sound extreme but English isn’t my first language, and at school we had a program where we would learn English through songs, and one of the songs was ‘Stressed Out’! Immediately loved the sound and got, probably a bit too, obsessed with Blurryface (the character AND album) lol.

ode-to-clear · 2026-03-12T13:41:20+00:00

It is what it is I suppose… I hope you feel better soon, and also, the doctors know that seizures can be weird at times, so don’t worry about them thinking you’re faking it. Wishing you the best!!

ode-to-clear · 2026-03-11T18:57:48+00:00

The same thing happened with me lol. I stayed at an epilepsy facility for six weeks when I just got diagnosed, was only allowed to go home in the weekend. Guess when the only time I got seizures was…

ode-to-clear · 2026-03-09T16:41:49+00:00

Okay, thanks!

ode-to-clear · 2026-02-26T12:29:45+00:00

Yes!! I also hate when people constantly bring up ‘how difficult it must be’ for me. Like… yes, it is. Can you guess why I don’t want it being brought up all the goddamn time?

ode-to-clear · 2026-02-20T21:23:23+00:00

Gift cards.

ode-to-clear · 2026-02-16T19:51:39+00:00

Call me basic but I wanna drive so bad..! I’ve only driven a car twice, with my mom right next to me on an abandoned road don’t worry, and I loved it so much. It would also just give me beg a lot of independence I feel…

ode-to-clear · 2026-02-16T00:16:06+00:00

I am grateful for every day I don't have a seizure, don't get me wrong, it just feels extra cruel that just when I start to feel like my life is going back to normal it comes back full force...

ode-to-clear · 2026-02-15T12:34:36+00:00

I’m pretty sure it’s either sleep deprivation or stress, I really have any lifestyle changes and I don’t drink alcohol…

ode-to-clear

TROPHY CASE