Actually Epileptic - Blog Posts
First day using my cane went bad tbh-
I didn’t have it at the correct height so it hurt my shoulder for a while and now it’s sore and some people stared at me but it stopped me from falling so many times which is great I feel really supported by it which is great! My friends say that it matches my aesthetic which idek how it does but thank god it does
I’ve noticed this too but I don’t have frontal lobe epilepsy but since my first seizure I also noticed worsened autism and tic symptoms. I am photosensitive. Has anyone else noticed this?
Just a little something about me. I've had epilepsy for 3 years now and it is tough. This just came to my mind because I have memory loss everytime. That's the name of my epilepsy 'Temporal Lobe Epilepsy'. As I've started my new job, I've been forgetting a lot of things that I've done and when I explain something new to my friends or family, I then forget what I'm saying or what I've done at work 😓. But it's not only work, I lose my memory quick anytime and takes me a while to remember. Good thing that I have an appointment with my epilepsy nurse next month. Need to talk to them more 🤲🏻💖
No, not all people with epilepsy have seizures when you flash the lights. No that doesn’t mean you should test it out right now. Your just going to do it anyway, aren’t you?
Epilepticon Day 1 Prompt
Hi guys! Welcome to Epilepticon! I hope to be seeing everyone’s awesome posts throughout the month! As today is the first day, and this month is Epilepsy Awareness Month, we’re going to start off with a classic serious prompt:
What’s one thing you wish people understood more about epilepsy? Is it something you find yourself explaining over and over again, or something you don’t even attempt to explain because you know people won’t understand anyway, or just a common myth/disinformation/misunderstanding?
Today, I was out with my nan, eventually we got to the discussion of me getting a job. My mum doesn’t want me to get a job until 3 months into the school year because I’m doing VCE history in yr 10. I spoke about how ill have to look for an employer who doesn’t care about my epilepsy, which is going to be a bit difficult because there are so many teens looking for jobs rn, and I’m pretty sure an employer is going to choose a non-epileptic person rather than me. I made a comment about how crappy it is having all your friends work and you being the only one not working, my nan then proceeded to lecture me about ‘how it’s just the way it is, and that it’s like your pop, he has PTSD, but he can’t do anything about it.”
I’m so sick of all these people, more specifically adults, talking to me and lecturing me and telling me off when it comes to my epilepsy like they know what I’m going through, like they understand. They can sympathise sure, but only on a certain level, their understanding doesn’t go as deep as mine does, and I’m so sick of them pretending that they have that understanding.
And it’s not just the adults in my life that do it, so do my friends. They try to understand, they try to say things to support me when I’m anxious to the lead up of a hospital appointment. They don’t understand that this hospital appointment could literallly change the way my life is operating, it could change everything. They don’t know that anxiety of whether this hospital appointment is going to be the one when they tell you that your never going to come off your meds. They don’t know the utter disappointment and regret that you feel when you come to consciouness after a seizure and realise what happened. They don’t understand that gut wrenching fear that you feel coming out of a seizure, on the floor, limbs sore, nauseous, with an excruciating headache not having a clue what happened or where you are.
Being a teenager is overwhelming. Being a teenager with a chronic illness who constantly lives in fear of having a seizure while also dealing with the crappy people who tease you for it or force harmful stereotypes on you is a whole other level.
The point of this post is that I’m so sick of people pretending to know what I’m going through, I’m so sick of it that it makes me want to scream. And I’m so sick of having epilepsy.
2025 leads to this 4th year of epilepsy life. READY FOR THIS NEW YEAR ♥️
The “want” after being diagnosed with epilepsy at 23 years old.
I just want to be pure.
Calling every chronic illness a "disability", is low-key stupid, don't y'all think like that? It is almost as if y'all tried to put a label on everything you don't understand. Sometimes, illnesses can, just... Not fit in your expectations. And y'all should accept it. Repeat after me, "Not every chronic illness is a disability!".
Not all seizures are epileptic, and not all non-epileptic seizures are PNES. Hope this helps!
And still, I'm curious how an appointment which I used to go to every week a few months ago, turned into something I'm afraid of. Making me have flashbacks over and over when I just hear the word "neurologist. Made me have a whole panic attack just because I need to go to a doctor. No, please, I don't want to be treated anymore... Can't you just avoid me? Don't remember about my disease? Make me live a normal life?
No. My epilepsy is NOT a disability. Why though? Because it doesn't prevent me from doing ANYTHING. It doesn't affect me all the time. Yeah, someone could say "B-but seizures are a disability!!!" Yeah, they could be. But, have you read the criteria to get disability with epilepsy? No? Okay, I'll list.
– Frequency of seizures. If they are too intense and happening too often (for example a few times per day.)
– Decrease in intelligence.
– Mental issues.
– Impaired ability to move.
– Developmental disorders.
So, that's why epilepsy doesn't make you automatically disabled, it just makes you ill. So, I prefer to use the term "sick, but able-bodied." Instead of disabled. Y'all should accept that disability is a status given by law. So, if you're getting money for your disability, and you have this status in your documents – you're disabled. Or at least if your disease is affecting you most of the time like POTS, fibromyalgia, arthritis etc. you're disabled.
But even if chronically ill means being disabled... I still prefer to be called able-bodied. I'm not disabled. So I don't deserve to be called disabled. Leave space for someone else, not me.
I'm waiting to be hated for my opinion. I don't mind anymore. I don't want to call myself disabled and bury myself in my illness. If I'd be hated for that, but I'd still be able bodied, I don't mind. You can call me like you want, and call yourself a disabled if you have epilepsy, because I'm talking about MY CASE not YOURS.
Thanks for reading. Stay healthy.
I understand everything. But y'know what? I'm still able-bodied despite being chronically ill. Yeah, I have some diseases and yeah sometimes they affect me. BUT. I'm not like this for the whole time. I'M NOT THE PERSON WHO DESERVES TO BE CALLED DISABLED. I'm sick, but able-bodied.
The sudden urge to delete all my disability related posts, so people won't see and won't like it, so it won't remind me of being sick>>>>>
To be honest, I feel kinda remorseful for making posts with hashtags like "disabled" and others. Why? Because thinking about my diseases constantly only worsens my mental health. I literally was about to go back to cutting or mutilating my body. Plus, I don't really think that I'm like... Disabled? Like my symptoms aren't enough to be called disabled or something... So, I think that I won't be making posts like this anymore... Or do them rarely. Hope y'all will understand. Thanks for being with me in those times. Take care of yourself.
And yet again nobody cares about my hobbies or how I feel. I'm just an ICD code. Right. Just forgot.
Invisible disability is still a disability. Even if you don't see it.
I want to kill myself because of being disabled. I'm a fucking mess right now. I feel grief, frustration and hopelessness. I wish I could cut myself again.
Trying to dump my sufferings to feel healthy again. I can't bear it anymore.
!!READ IF YOU'RE STUDYING JAPANESE AND HAVE EPILEPSY!!
There's an app called "Memory hint", and please, don't download it if you have photosensitive epilepsy or at least consult with a professional, because there's "Kanji catch" mode that could POSSIBLY trigger a seizure, at least if you won't lower speed. I almost had a seizure because of it.
Please, be careful with apps and videos you're watching, because sometimes there's no TW!
People's honest reaction when there are MUCH more physical diseases than infections ones or breaking your limb
I'm so fucked up with these diseases thing. Everyone is taking in my disability first instead of my personality. Everyone wants only to discuss my disease instead of my new hobby. Maybe I'm really just a code in ICD... Ehh... Why can't I throw away my feelings and just accept the fact of me being a living movement disorder.
"Diagnosis isn't an excuse!!" Then what is an excuse for my uncontrollable movements, huh?
It's always "we will represent disabilities!" Until it comes to dystonia/atethosis/chorea/etc. Until they see a REAL seizure, not when a person just shakes on the ground. Until when they see how a person can't get up to go to the toilet due to fatigue. Until they see how a person suffers from pain all over their body, although they ate BUNCH of pain killers. Until disability ISN'T aesthetically lay in bed and sit on the internet. Until they see how a person can't go out on the street without someone who could help them, so they are forced to bed rotting all the time. Just please, if you speak about disabilities, talk about REAL disabilities, not "aesthetically" laying in the bed while everyone is pampering you.
How to explain to people that there's NO NEED in restraining a person when they have a seizure, like bro, just put them on their side and count time, and if the seizure doesn't end or lasts more, call the ambulance. NOT RESTRAIN a person, because either you either them will end up with a trauma.
Just accept the fact that flash warning doesn't count as a warning when it appears on a 0,1 second with a small font in the bottom of the screen. I hate it when people can't take a minute to make a good tw.
Why can't I just give up and stop visiting doctors and let myself rot until it's too late? I feel like I'm already starting to decompose, just leave me alone, so I can rot
Some people are just: "we're tolerant! we would never bully or laugh at anyone!"
And then they see a disabled person, and start to laugh at them, or say "you're just pretending!" shit
When people are saying that I'm sick, I don't really want to admit it. I don't feel like I'm suffering enough, like, c'mon... Isn't the word sick means just something more hard to bear? I'm literally doing nothing, but laying in bed and complaining about how hard my illness is, while I still can walk and do some things... Jeez, how tired I'm of these physical conditions...
Having a serious disease is just like:
"Oh, that's just an illness and I don't need to feel guilty because of it, because I can't control it"
And then:
"FUCK, HOW MUCH I HATE MYSELF, I CAN'T DO BASIC THINGS, I'M ALWAYS ISOLATED, MY DISEASE JUST BECAME A MEME, WHY DO I HAVE IT??? JUST WHY?? IS THAT I DESERVE??? WHY I SHOULD I LOVE MYSELF WHILE EVERY FUCKING SECOND I'M WASTING AWAY??!"
People who have any physical issues, I've created a discord server for you all! Hope that you'll have fun!
https://discord.com/invite/MgU9nvnK
People with physical health issues, what do you think about making a group of us, to support each other? We could also make some representation to spread awareness about our illnesses! Just tell me where you'll be comfortable to chat! And also, there's no matter which diagnosis you have, because we'll represent every physical health issues!