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marculees · 3 years

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Epilepsy Awareness Month💜

I recently seen this post by @interstellix who made great points about epilepsy for Epilepsy Awareness Month. It sums it up really well so I suggest you give it a read and reblog! Its nice to find another photosensitive here too because we’re such a small group within the epilepsy community. I deal with anxiety on top of my epilepsy and while they aren’t always related to each other, I don’t hear enough about the day-to-day worries of epileptics. Things that seem completely normal or fine to some people can be dangerous for me, which is why stuff like giving trigger warnings are much appreciated. But often, non-epileptics don’t know about what its like to actually live with epilepsy - not just having seizures. I want to add on some of my own experiences with a funky clickbait title, below the cut. Anyone who reads this all is a star and ily⭐️

10 Things Non-Epileptics Don’t Get (Yet)

1. That moment in movies when the character wakes up and a bunch of faces are gawking down at the camera uncomfortably. Always have someone to stay with the person having a seizure. But out of care for both that person and the people around, its best to get everyone else away. No one enjoys watching someone have a seizure - it’s scary and knowing you can’t stop it can ignite feelings of guilt or panic. For the person having the seizure, its embarrassing - they aren’t even conscious of what’s happening and for all they can remember, they were minding their own business and now they’re waking up and barely able to move their body without wincing in pain.

*TW: BODY FLUIDS* I’ve literally puked, shit and pissed myself all at the same time unconsciously in front of a room of people. I’m lucky these people were my family but it doesn’t make it any less embarrassing or upsetting knowing that everyone there saw me in such a state. A fear I had growing up was having a seizure in front of my class and the students making comments about it, thinking it was funny. In today’s age, filming seizures is something to worry about too because of how easily it can be shared to others online. Even if you aren’t an arsehole like that, try to be as respectful as possible and get everyone else to evacuate the room. At most, have three people to stay there: one person to stay close and time the seizure, one person to move furniture away and find something soft to lay under the epileptic’s head, and one person for crowd control who is keeping everyone else out and reassuring them all it’s okay.

Whatever you do, don’t make the epileptic feel bad for having a seizure. They can’t control it. Afterwards, comfort them and let them know its all over and you’ll stay with them until they feel better (unless they say they would rather be alone). Most of the time, the epileptic will be so tired and sore after their seizure that they’ll fall asleep. Let them; they need it. I’ve woken up on a couch, in my bed, the back of an ambulance or in a hospital bed and sometimes I was laying there for half an hour, sometimes a whole day. Knowing someone was there is relieving. Knowing everyone was there is shaming and it doesn’t make you feel any better when they’re all in your face afterwards too. Don’t be the camera crew.

2. Travelling alone is either a dream or everyday reality for a lot of people, but its a no-go for some of us. I was raised in a very overprotective household and still today, I don’t have a lot of freedom. Driving is usually one of the first bits of independence you get, but not for me. I’ve had seizures while out travelling because of the SUN. The sunlight flickering through trees, railings or bouncing off surfaces have triggered seizures in me where my family have had to pull over. The thought of being the one driving in such a scenario is terrifying to me, my loved ones and everyone else on the road. Driving is such a normalised thing for people my age that I’m embarrassed to bring up my own case unless someone specifically asks.

Then you have public transport. The sunlight issue is also here but this time, you’re with a bunch of strangers (see Point 1 again). Something my mum drilled into my head since I was younger was that if I ever got public transport by myself, then I could have a seizure and someone would film it and another person would rob me (and then you wonder why I have an anxiety disorder). I got my first bus by myself when I was 19 and for something so mundane to most people, it was like a little adventure to me. My mum didn’t approve but she complained about having to drive me everywhere too. While its fun to get the bus into town every now and then though, it becomes a bigger issue when travelling is a daily requirement and you aren’t able/allowed to drive yourself.

Free public transport doesn’t always include those with epilepsy, depending on which country you live in. What do you do when an employer asks if you can drive? What do you do if you have committments to go to and no one is around to drive or come with you? Or you need to explain why you’re going out, every single time, because someone else has to decide whether its worth the risk. Sunny roadtrips? Want to be a pilot? That last one isn’t a joke, by the way! I used to get a coach/private bus to college and if it was sunny, I’d pull the curtain over, wear my sunglasses and try to nonchalantly cover one eye to help. You can’t really get a curtain while driving your own car though and driving one-handed is not cool, its irresponsible.

3. Staying up all night talking with someone you love isn’t as romantic as we’d like it to be. All-nighters, i.e. lack of sleep, are a huge trigger for many epileptics. I wasn’t allowed to go to sleepovers with friends as a kid until I was 13, and at that sleepover I ended up having a seizure in the middle of the night after waking up to use the bathroom. Not to flex, but I had a seizure on the toilet. Where’s the weirdest place anyone else has had a seizure?. As a result of that, I was put back on medication after being told I was growing out of my seizures and had been med-free for one whole year. I’d love to stay up with a loved one and spend the night talking or watching movies, but I think a seizure would be more of a killjoy than going to bed early.

3. Unless you’re the paparazzi, camera flashes won’t give photosensitive epileptics seizures. Its a small gesture and I do appreciate it, but don’t worry - one small flash from a camera will not send my brain into override. Just don’t be taking photos from 5 different phones at the same time for more than one pic. Standing and waiting for people to take a photo all at the same time is awkward already because you don’t know who to look at, what to do with your hands, if you should change pose, smile or not, etc. Just take one flash photo and be done, or don’t use the flash at all if you don’t need to. Ring lights are a common thing now, by the way and I love them? Bye-bye camera flash!

I don’t blame anyone for having these types of concerns though. The only time you’re probably warned about flashing lights is when you’re about to watch a news report or awards show where there will be paparazzi and performances will be aired. Concerts are another thing that can be risky depending on the genre, size of the venue, whether its indoors or outdoors (if you’re like me and enjoy EDM music, you’ll have a very low chance of actually attending or watching anything live fdkslbjfdhb). Those things we avoid. But you taking a photo with a once-off flash will be okay, don’t worry. Seizures aren’t triggered by a single flash, but rather multiple flashes in a short period of time. They’re called Hertz and that shit hertz when its between 3-30 flashes per second. Also, fuck strobes, the Incredibles 2, Into The Spiderverse and any other movie that uses these for unnecessary effect.

4. Not everyone is diagnosed with epilepsy in their childhood and though some might grow out of it as they get older, not everyone will. I thought I had been growing out of it on two occasions (see point 3 again and point 9). Some people only get diagnosed with epilepsy later into their life. If you’re diagnosed while young, its easier to adjust your life because you’re growing up with it as your norm and its something you’ve just learned to live with. But for some people, they suddenly have to change their entire routine that they’ve established since they became an adult. Be sympathetic to those with epilepsy in their adult years, especially those who only got a diagnosis. Its not just a disability for children.

5. There are different types of seizures and one that’s commonly misunderstood is the partial seizure. These types of seizures have been mistaken for people being drunk or high (i.e. slurred speech, difficulty standing up or walking in a straight line, etc.), which has led them to getting kicked out of venues for something they have no control over. Swimming pools seem to be a common place for these bans, as well as gyms. Sometimes, these people are still somewhat aware they are having a seizure but cannot control them, which is really scary to think about. I don’t have them myself but I cannot imagine how frustrating they must be to not be taken seriously and instead as someone being high or intoxicated and then being punished for that. Alcohol is usually avoided as it can trigger seizures but when these seizures happen at social events, people can get the wrong idea. If you know someone who has these types of seizures, keep an eye on them if you’re out together. We’re usually only allowed one pint and hardly anyone gets that drunk after just one, so be aware that its likely they aren’t actually hammered but having a seizure instead.

6. Nobody likes being overworked but school, college, jobs and sport can very hard on us. Unless you’ve had a seizure, your teacher or boss probably won’t extend a deadline for you. The latter might even fire you. Chronic fatigue isn’t taken seriously. School is one big memory test in most countries, but for those with aura seizures, their ‘spacing out’ can affect how information they are actually taking in. Side-effects of meds can also make concentration and memory tough, and I hate how forgetful I can be because then I feel like I’m unreliable even though I push myself to give 110% anyway. Some activities like sports and physical education can be more draining than they would be for the average person, and sometimes I’d have to sit out during these activities because I felt an aura coming on after overexerting myself. I wish I could sit out having multiple assignments and group projects due in the same week, but college doesn’t work that way. I wish I could tell employers that I might not have that presentation done by the end of the day, but that wouldn’t go down too good either.

If you know someone who takes longer to complete tasks that might seem simple to you, ask yourself if you’ve ever considered they might have epilepsy or another chronic illness or disability. Don’t assume they’re lazy if they need to take an extra day or two to complete their final essay or have to stop their beep test earlier than the rest of the class. I didn’t know a good average for the beep test was 8-9, because no one ever told me. I pushed myself to 16 because I was scared people would think I was lazy and that I was dropping out to be with the other girls who agreed beforehand. I then ended up having an aura that almost slipped into a full seizure. I also almost had a seizure an hour before my religion exam in my Junior Cert at school. My mum even insisted I stay home and miss my State exam because of it. I still went though, took a bathroom break because I had another aura, and finished with an ‘A’ but had it been a different day, I might not have been so lucky. Its about knowing yourself and your limits, but we aren’t always informed that they should exist and then you end up doing stupid things like me that could hurt you. Likewise, its important to be understanding that not everyone can work at the same pace as you. It doesn’t make the quality of our work any less even if we need more time or energy to do it.

7. Side-effects aren’t always in the short-term. My own meds are advised to not be taken long-term as they weaken my bones over time. I’m 21 now and I’ve been on meds since I was 8. I wanted to reduce my dosage and eventually become med-free last year but the neurologist told me I still had brain activity and needed to stick with them. In fact, they almost ended up prescribing me more even after I had told them I was five years seizure-free. Why? See point 9. I’m lucky though because I’ve only been on one type of med. Some people can take years to find what works and their neurologists will prescribe them all sorts and leave them with awful side effects. Only last year I was chatting with a woman whose meds had caused sudden depression and fits of anger in her after she had been diagnosed and given her prescriptions. She eventually got brain surgery instead.

8. If you have a uterus and/or want to have children, do your research and a LOT of it. Birth control is usually a tough decision to make and often times, it can feel like you have no choice. Its so important to check with multiple neurologists and doctors which form of birth control is the best for you with your medication, because even the slightest new introduction to your meds box can have unpleasant side-effects. With the current medication I’m on, I can’t take the pill unless I want to increase my current dosage of meds as the pairing cancel each other and make me more vulnerable to seizures and other side-effects. I’m not pregnant and yet I have to take daily folic acid supplements because my meds cancel that out too. Every month or two, I will faint or almost faint on the first day of my period and I’m more vulnerable to having a seizure during that time. If I ever want to give birth, my children can possibly inherit my condition or be stuck taking care of me when I should be caring for them. I wouldn’t wish that upon anyone.

This is not to say that people with epilepsy can’t have fulfilling sex lives or raise families. But we just do it at a greater risk that even some neurologists aren’t aware of. I had to tell my neurologist last year why I didn’t want to go on the pill because HE didn’t know it interacted negatively with my meds. I’ve known women who were prescribed the pill or meds BY A PROFESSIONAL that interacted negatively with each other and gave them seizures as a result. It takes ‘find the right method for you’ to a whole new level. If your partner has epilepsy, its so important to discuss birth control and take their condition into consideration. I hear men telling their girlfriends to go on the pill so that they don’t have to use a condom, which is really selfish for a start and also disregards other forms of birth control. Do your research but let them and their own trusted neurologist decide which form is best. You should still be using a condom to protect yourselves anyway! And if you and your epileptic partner decide you would like to have children, do the same process and make sure that they are in a safe position to do so.

9. *TW: DEATH* Threatening (even ‘jokingly’) to trigger a seizure in someone is playing with that person’s life. SUDEP (Sudden Unexpected Death in Epilepsy) affects roughly 1 in 1000 people each year. Even if that person doesn’t die after their seizure, you may have just broken a record they set for days, months or YEARS without a seizure. You just revoked their driving license and they weren’t even behind a wheel. You just prescribed them new doses of medication without any years of medical school.

Growing up, I had countless incidences where classmates would joke about making me have a seizure. If the teacher left the room for anything, the first thing they would do is run up to the lightswitch and fuck around with it. In secondary school, I stopped using the bathroom at lunch because one of the girls thought it was funny to deliberately flick the lights on and off anytime I was inside. She would snicker and call out to me while I was in the stall, asking if it could make me have a seizure. Even after saying yes, she continued to do it. If I did end up having a seizure in that bathroom, god knows what could have happened. I had a seizure in a bathroom before and was lucky I only hurt my jaw as my head slammed against the wall. Others aren’t so lucky. Injuries from seizures can be brutal, just like OP said. Yeah, you might not kill them by triggering a seizure, but what injuries do they have to deal with after?

Imagine playing a game for years and you spent ages collecting all the items, defeating every boss and proudly showing off the trophies you won. Now imagine someone suddenly pulls the cord as you’re playing; your game freezes, the screen shuts to black and when you try to frantically start it up again and see where you had remembered to last save, it says your data is corrupted and deletes everything without your permission. It doesn’t matter where or when you saved. You have to start your progress all over again. You can try memorise the strategies from before but the game switches things up and suddenly you’re hit with a difficulty spike out of nowhere. The person who joked around and pulled the plug doesn’t have to do anything. And if they wanted to, they could do the same thing again and again. Don’t be that person. Be their Player 2 and help them. If they need to go into a dungeon but they’re scared to be alone, offer to cover their back. If their health is low, find them a safe spot and let them heal. The same goes for appointments and seizures. Its not a multiplayer game by default and while they can power through solo, that doesn’t mean they don’t need help if they’re ever stuck.

10. To end on a more positive note, there are lots of successful people out who have/had epilepsy and you probably never even knew. Cameron Boyce’s passing brought attention to SUDEP and celebrities with epilepsy but did you also know about these people and their own cases and seizures?

Prince

Elton John

Lewis Carroll

Danny Glover

Lil Wayne

Neil Young

Hugo Weaving

Charles Dickens

Julius Caesar

Vincent Van Gogh

Theodore Roosevelt

Adam Horovitz

Susan Boyle

Rick Harrison (the Pawn Stars guy!)

And some who are not confirmed (due to medical practices of the time) but are suggested as a result of numerous seizures:

Leonardo da Vinci

Michelangelo

Edgar Allen Poe

Agatha Christie

Socrates

Napoleon Bonaparte

Aristotle

Alexander the Great

Epileptics are humans, normal people just like you. And like you, they’re capable of great things too. If you think about making a crude comment to someone with epilepsy, think about these people and ask yourself if you would say the same things to them.

If you read all of this, comment with a ⭐️ and please reblog to spread awareness. Whenever we talk about epilepsy, we start and stop the conversation at seizures. Its good to bring awareness to the other things too because its something that affects every part of our lives. Its an invisible disability but that doesn’t mean we are hidden from the disability community and discussion!

#actually epileptic #epilepsy awareness month #epilepticon2020 #just epilepsy things

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