#and I mean seizure triggering amounts of stress (thank god it wasn’t anything worse than usual omg. it felt like it could���ve)

[fruityfroggy]

You ever feel so eepy that life be lagging in real time?

Like do I even exist rn?

[interstellix]

november; epilepsy awareness month

since november is epilepsy awareness month, I’ve been considering dropping something like this for a while now, though hesitated since I wasn’t sure how many it would reach out to. however, not too long ago, I got the request of writing about it and explain what it is like to live with the condition (thank you anon :’)) and i figured that, really, there’s no harm in doing it. so, i decided to put this out there and hope that this reaches out to as many people as possible. admittedly, this ended up longer than planned but if you still decide to read it, thank you, big kudos to you :)

before actually going on, i may add that epilepsy, like most conditions, is something that varies from person to person so part of this is written based on my own experience with it - if a fellow epileptic wants me to add something, or feels like there’s something to correct, please do let me know.

i'm writing this purely to let people know about at least some of the pain with epilepsy, because it's not just having seizures. it's also worrying your family and friends, having to adjust your lifestyle to it (which i’ll come to a lil bit later), medicination, the side-effects of medicination, the fear of forgetting medication, the side-effects of forgetting taking medication even just a single day, possible anxiety or depression, embarrassment, hospital visits, tests, not being able to do certain things you want to do, people joking about it and making fun of you, scary and random body jerks, fear of waking up in an ambulance, fear of waking up with serious injuries or fear of not waking up at all - all of these are things that come with epilepsy and it's more of a pain than, to be honest, non-epileptics can imagine.

all that said, to those who have heard about epilepsy (or not at all) but don’t know what it actually means, is a neurological disorder; the activity in your brain becomes abnormal and uneven which mostly leads to seizures but also various sensations or loss of awareness. so it’s not constantly on-going and only actually happens when something triggers the brain to have that abnormal activity. it can happen to anyone, and when i say anyone, i mean anyone can have seizures, it’s just that it doesn’t automatically always mean that you have epilepsy (basically, epilepsy -> seizure; seizure -> not always epilepsy).

again, the condition is different from epileptic to epileptic, meaning that the triggers for seizures can vary a lot and depending on what kind of epilepsy it concerns. my own main triggers are flashing lights (also called photosensitive epilepsy) and lack of sleep but it can also be stress, skipping meals, overeating caffeine/alcohol/drugs/medicine, head trauma (aka head injury), brain damage (for example a tumor or stroke), etc.

symptoms for seizures can also vary. i’ve noticed that a lot of people think it’s always going unconscious and violently shaking/jerking, but it can also be staring blankly at nothing for a short amount of time, losing awareness, have rapid twitches in arms and/or legs, body stiffening, muscles going limp, and on and on.

honestly, one particular thing i feel like people need to know is that epileptics are just as human as others. aside from the condition itself, it socially and emotionally feels like shit when we’re treated differently. what i’ve, personally, often seen epilepsy being treated as contagious, a disease, mental disorder/illness or psychological disorder is in reality a neurological disorder. for the love of god, please take that into mind when you meet someone with epilepsy (especially if it’s your first time) because, while there’s nothing wrong with any of those, it’s really not fun when people treat you like it. we’re still human, and more human than those who think otherwise. on top of that, most epileptics are able to live just like anyone else, sometimes perhaps on the cost of adjusting your lifestyle to it, but by the end of the day many of us can live the same way as anyone else.

adding to that, if someone actually opens up to you about their epilepsy, tbh i hope you’re feeling grateful. for some, it’s not always an easy topic to talk about it so when they actually do let you on about it, you should know that it’s because they’re putting their trust in you.

something else i want to bring up is the do’s and don’t’s if you see someone have a seizure. it can be scary, understandable and this might sound ridiculous, but stay calm, for the sake of yourself, the person who’s having the seizure and people in your surroundings. this one got quite lengthy, so i’ll put it under the divider. thank you for making it this far, seriously, but it’d be great if you continued since this, no joke, can save a life.

time the seizure: most seizures end within a few minutes but if it’s still going on after five minutes, call an ambulance, whether you know if they have a history of seizures or not (what goes that, you can also check if the person is wearing some kind of epilepsy i.d)

surroundings (brief mention of blood): basically, bring the person away from harmful objects. to bring up my own personal examples, i have, during two different seizures, hit my head against a table (literally broke the entire thing) and against a shelf. while the first one miraciously didn’t give me more than a bump, the latter caused a jack and i ended up bleeding from my head. keep in mind though, that the objects don’t always have to be harmful for the head, but any part of the person’s body. obviously (i hope), bring them out from water if that’s where the seizure started.

turn the person to lay on their side: while they’re still unconscious, don’t let them lay on their back as this can block the airway. instead, put something soft under their head and loosen anything tight that might be around their neck.

don’t put anything in their mouth: for the love of god, just don’t. be it food or a cloth or something of that kind. a lot of people do especially the latter to prevent the person to bite their tongues off or swallow it (no, you don’t) but this just increases the risk of blocking their airway or making them choke on it. yet again my own personal example, this happened during my first seizure and i ended up having a cardiac arrest (how the hell i’m still alive, i still don’t know).

don’t restrain or hold their body: aside from turning them to lay on the side, don’t restrain their body, for example holding onto the parts that are jerking. this can also cause injuries or make it more aggressive.

stay with them: not only during but also after the seizure, stay with them. seizures are really, really exhausting both the brain activity and since the muscles in their body stiffen during the seizure. it can also cause one hell of a confusion/dizziness and stress so stay with them and calmly explain what happened as well as where you are. if you called for medical help, please, try to wait until they’ve arrived.

don’t give them cpr during the seizure: just don’t, it’ll only make it worse. you can, however, do it after the seizure in case the person doesn’t wake up and has stopped breathing.

also, if you’re an angel like @astronomlns and warn an epileptic for something that might include flashing/rapid lights, i love you and hope you’re having a good day :D