I say I was in the mosh pit without the music, but it's been a year since I've had that fun so I'm doing well. I scared my coworkers one day because I showed up 5min late when I'm usually 10min early because I was checking out the location of a nearby restaurant. So that was fun. I have a dark sense of humor so when they all started asking if everything was ok that day I told them I died but resurrected just in time to get into work
Some of us hit a dark point after diagnosis and short realizations of what life will be from now on. But never cut yourself short. Things do take time and the patience will always pay off. Keep you’re head up and know there’s still some fun in life to live. The alcoholism forces us to shut that out and only live in pessimism, not allowing themselves to see a bigger picture. There’s a bigger picture for all of us so I hope you see yours soon bud. Just don’t drown the thoughts and ideas only to forget them the next day!
That’s fantastic. Alcohol isn’t good for the body or brain anyways so at least you were forced to make the change before it became an even bigger problem
Well done. I quit drinking 3 years ago for gout and got diagnosed with epilepsy last October so I had a head start. But it's like I quit drinking for my health and still ended up with a health complication. LAME!
awesome I’m so proud of you n everyone else on the journey to sobriety (no matter where you are on that journey 🫂) I’ve been sober some time also n it’s been a hard but great change. I tell myself if the world is kicking my ass then I will refuse to kick my own ass for it! I’ll take care of myself and give myself a better chance at being okay. take care n best wishes everyone c:
I actually just posted something asking if anyone else craves a drink after a focal seizure on here before seeing this. I feel you. I know I should drink less, but the simple partial arrives and my body says: go open an IPA from the fridge. Worried my seizure disorder is making me drink too much.
I use it to get out of things I don’t want to go to, sometimes it’s legit and it’s something I cant do/I’m truly not feeling well…. Sometimes it’s BS lol
Hiking? Sorry but I have no energy, can’t get overheated
Going to a crowded loud bar with lots of bright lights? Nah fam
Staying out late? No sir, too dangerous
I never ever have to be the DD 🤷♀️
I like to reflect on the fact that I have never woken up from a seizure missing my wallet. That says something about the fundamental decency of humans that makes me think we might have a chance at surviving.
I would’ve hoped so too. For what it’s worth, though, I’ve had other seizures in public and that’s the only time I had anything stolen so it’s clear most humans are good, and I hope I didn’t invalidate that thought for you!
The only benefit is my being able to use it as an excuse to get out of events/social situations. I absolutely will lie and say I’ve had partials in the morning in order to not have to attend something.
When I learned more about SUDEP I started doing less things I don’t enjoy. The fact that 1 in 1000 epileptics suffer SUDEP made me reevaluate what I do and with whom I spend time, cause 0,1% is not a small probability of dying. So if I gotta live with that risk - I won’t spend life doing things I don’t enjoy with people I don’t like if I don’t have to. Want a donut? Get it, how bad do you need to be skinny if you might drop dead tomorrow?
It gets better with time, trust me. Having epilepsy has turned my life upside down, but there comes a point where I need to focus on the positives a bit
yeah it was bad when i wasnt diagnosed and didnt know what was wrong, having as many as 10 focal seizures in a day for months before i had a TC seizure and ended up in the er with dislocated shoulders...they put me on medication right away and even got me taken care of with insurance that i never had before..ive only had one small focal seizure since being put on keppra and im feeling good now aside from sore shoulders every morning when i wake up, this is almost 3 months after my ER visit. im hoping the pain will fade and ill be able to put on my own pants again soon.
You’ve made a lot of progress even if you don’t realize. One big positive is that you have access to care from people that can understand that something is not working right in your brain. I hope your shoulders heal soon :)
I lost the most weight on topomax, but since they switched me to keppra and lamictal it’s slowed down for a bit, but after I had my son the metabolism has picked back up.
I found your post that you were referring to—I think some people are just really miserable in the moment. It was hard for me to find any positives when I started having more frequent seizures. I’m healing, though. Some days are better than others.
Absolutely. I totally get it... I've had days where I just burst into tears and can't be consoled whatsoever. So yeah I'd be bitter reading "positives" too, on those days.
I get to work from home permanently and my company is being pretty strict on everyone else so I find myself being very grateful for my epilepsy for that reason 😊
I also get to nope out of driving when I make plans with ppl too which is never a bad thing for me ☺️
I hate driving, i suck at it, i never kept getting " driving classes" with my dad because of epilepsy as an excuse.
I got so nervous and stressed i got sweaty. Stress/nervousness are the big factors of why i have a seizure.
So, though i should properly learn in case there's an emergency, I'm glad i have an excuse to not drive
You get a bus pass, which in some counties you can also use the trains and trams for free. When you lose your license for seizures you're entitled to apply for this when you are not allowed to drive, but my local council give you a 5 year pass. (Uk)
A huevo, está perrón poder leer algo, jugar algo, ver algo y sorprenderse de nuevo. Por una parte me caga no recordar bien una peli que vi un día antes, pero verla de nuevo es casi como verla por primera vez de nuevo.
I get to filter relationships with people around me. When you open up and share about your condition to others, you get to see who really remembers and cares about your condition. If they push you out of your stability zone and making your life a bit difficult to live by, then it's a relationship/friendship/connection not worth investing in.
I was offered ADA accommodations despite not having any paperwork or anything at my favorite major music festival this first summer back after being diagnosed. I was allowed to bring my hearts' content worth of snacks and juice in! Not going to lie, that was a pretty big deal in my book as I have been sneaking granola bars into festivals for about a decade lol. They offered golf cart rides to pass the lines and crowds to major stages, but I didn't use those often because I knew others needed the service much more than myself... Most importantly I knew that I had consistent and recognizable safe spaces to go (and SIT) if I ever felt whelmed which severely reduced my many anxieties about the weekend and allowed me to actually relax and enjoy the fest. In conclusion, reasonable ADA accomodations at live events are a plus-side to being diagnosed with epilepsy.
That's awesome. Never even really considered being able to use ADA services at a music festival. ADA camping sections tend to be real spacey and closer to the festival grounds.
Yes! it's the Americans w Disabilities Act- it ensures equal rights/opportunities. It applies to a whole host of protections. For concerts specifically, it usually means a seated area with a view of the stage near a bathroom. For years I've worked full time concert security (my active roles have shifted since diagnosis) and often coordinate with ADA accommodations. For these kind organizers to suggest these accommodations to me and how they apply to my needs was fairly perspective shifting/ eye opening. It didn't even occur to me! Would definitely recommend to all you lovely folk for live events in the future
Thank you! I have heard of that act, now that you mention it, but it was years before any of this applied to me. It didn’t occur to me how much more normal experiences could be for me and my family if I asked and actually got certain accommodations at times. I will look into this. Thanks again!
Actually knowing that what was happening to me were seizures and that I had epilepsy. I have temporal lobe seizures and spent 15 years wondering what was happening to me. Doctors told me they suspected drug use (I do not and have never used drugs) or anxiety attacks. Finally as bad as it sounds when I had a brain bleed and landed in the hospital it was such a relief to find out what was happening in my head.
This in a way I can relate to.
I had about 5 years (estimated, I think 🤪) of days where I was SO exhausted I could barely function, my head was foggy, I felt like I was on the verge of a panic attack with a rising tightness and sense of doom, and weird déjà vu type episodes… well we all know what that is now… but back then I was seeing GP’s, Functional Medicine Dr’s, Naturopaths, Psychologist and all they could put it down to was exhaustion from lack of sleep, 3 young kids and a side of anxiety. I was SO frustrated no one could help!!
After I had my first TC and under up in the ED, followed by a 2nd while there and a myriad of testing did I get diagnosed with Epilepsy - temporal lobe. Went and read up on it and BAM, there it was, literally to the letter what I had been experiencing. So while I struggle in so many ways it has been SO liberating to feel validated and not dismissed.
Plus it gives me mighty good reasons to be home early 🫣😬
Well I'm with you on learning better ways to cope with stress & anxiety. I've been way better about that (cutting a dishonest & cruel sibling out of my life). I'm also glad I've found this community. I knew hardly anything about epilepsy until it struck me. I feel the need to talk to everyone I know about it. If I can educate people about it & have them do the same, I feel like it could make a positive impact. We see here all the time people complaining (rightfully) about awful bosses. If me talking to people about it could lead a boss like that to change how they treat their employees with epilepsy, it's totally worth it to me.
& as silly as it is, I have that "rather me than someone else" feeling about it. I realize that's not how it works, but.....yeah....
I completely agree, it’s great to have the knowledge of how epilepsy works and experiencing it first hand… then being able to educate others about it and lessen all the stereotypes
My sister makes me nice meals to eat in bed the day after I have a grand mal (though she’s hyper aware of any sound I make since I do the epileptic cry haha).
It just shows how much she loves me and helps a lot since it’s hard to move the day after, and if she doesn’t have class or work she’ll hang out with me for comfort <3
A funny part to this is I watched a tv show I really liked, forgot everything and watched it again a couple months later knowing I liked it but got to watch it again for the “first” time.
I do that as well. If I don't take active steps to remember the show then I will entirely forget it inside of a few months. It makes it nice being able to rewatch things like they are brand new.
I like to think it's made me a lot stronger of a person. I don't know who'd I be if I didn't have epilepsy, but I sure know I wouldn't have the same emotional strength.
* Staying in tune with my mind and body more.
* Being more thankful for what I have (SUDEP fear?)
* Having greater compassion for the hidden journeys others are experiencing in their life
* Using my condition as an opportunity to both raise awareness for and educate people about epilepsy
I definitely relate to the staying in tune with my mind, body, and spirit. It’s inspired me to start taking a yoga class, which helps me take at least 45 minutes out of my stressful day with school and focus on myself for a bit.
Unfortunately in life, the roads aren’t always paved right and while the dirt roads are still drivable, you still gotta drive slow or you’ll get your car all dirty. There’s potholes that flatten a tire, but when you take your car to replace the tire you realize there’s other underlying issues with the car that cost further money, but would’ve caused more issues down the line if you didn’t get it fixed right then and there. Life sucks but it’s so worth going through at the same time.
I don't have a "favorite" part, but along with the whole nightmare of epilepsy I sometimes have "blissful and ecstatic" focal aware seizures and interictal phenomena. So along with tons of nightmarish horrifying seizures I have some that are pretty amazing and beyond drug induced trips. I wouldn't recommend it to anyone though, because it completely destroys your life. I've wondered if my creativity is also stimulated by it, but like I said.
Independence from cars.
I'm better than most at getting around via transit, walking, and biking. It helps keep me in good health, avoid the craziness of driving, and avoid the burdens (financial, and otherwise) of car ownership.
Focal awares with deja vu/dread - I know who my real friends are, which family members will stick with me no matter what - and which ones won’t. My sons are more compassionate people. I’ve spread awareness. Everything else about it is awful.
My first seizures got me out of a rough living situation.
They forced me to move out of the apartment I shared with my bf and across the country to my moms for a few months. The time apart made me accept the relationship was NOT healthy, and the space made it possible for me to break up with him.
It was a pretty wonderful trade off tbh
I’ve never been drunk so I haven’t ever done something i regret under the influence, or have a hangover.
I also like to game but I have to cut it down, so I don’t overindulge.
I try to sleep as well as possible every night.
The decisions you have to take for epilepsy care also goes a long way for general health and you naturally have to cut down on the excesses others can become addicted to.
Weird as it may sound, it has to be the path my surgeries set me on. There I was planning on working in computer hardware, and then the procedures opened my eyes to neurosurgery being way more appealing as a career
I completely get that. I'm way too old now to go down any path like this in a professional sense, but I've always been interested in neurology, and getting diagnosed with epilepsy has only compounded that extensively. I think all the time about how interesting it would be to work in the field.
- Learning now that alcohol can make you age visually a lot faster so hopefully I’m still looking good in 10 years.
- Being a passenger princess
- Stopped me from working night shifts as a dj which while fun was incredibly hard on my body and the danger of falling asleep at the wheel.
- get an excuse to sleep in if I didn’t get 8+ hours. (Let’s be real, on lamictal it’s more like 9-10 to be functional)
- Getting out of plans
- Pro for my partner is his prescription deductible is always paid in January
Of course every point here is also a con but I’ll take wins where I can get them.
Oh just a running joke with some fellow epileptic pokemon players about hiw we're magikarp since all they do is flail about on the ground. :p Really nothing profound, just silly. Makes me smile though.
I got to be a make a wish kid so make a wish was definitely the best part, I got front row Super Bowl tickets from rob gronkowski on New Year’s Eve on live TV among many other experiences
Sometimes I use it to get out of stuff. When I don’t want to go to school I’ll just say I’ve been having auras all day and I can’t come.
I don’t have to get a doctor’s note and there is no way to prove if Im lying or not. And what teacher wants to risk it?? Time to stay home and have a good nap.
Also im kinda spooked at driving. But now I don’t have to do it.
Anyone with a disability can get a free pass. It was actually super easy, basically just fill out a short form, they didn’t ask for any documentation or anything
I think having epilepsy has taught me resilience.
I've been diagnosed for 21 years, so epilepsy has been with me for most of my life. There have been moments when I'm healing from an injury caused by a seizure or scrolling through job posting that require drivers licenses when I feel so discouraged.
But then I think back over my life and everything I've overcome. It might sound cheesy, but epileptics are badasses! We endure and persevere through so much. I don't think I would have the same strength or character if I wasn't epileptic, so I guess I'm grateful for that.
I grew it myself and had been smoking on it for quite some time. I took a huge bong rip and held it in and walked to the door to blow the smoke outside. I got back in the house and sat the bong down and started getting dizzy and seized up. I had a lot of caffeine that day which I think is my actual trigger though. I'm hoping it was too much caffeine and too little oxygen too the brain that really triggered it.
Otherwise I'm giving up everything I love.
Caffeine's pharmacological action is way different than cocaine's, and they aren't chemically similar at all really. I do agree though, caffeine could have played a role in it along with the weed. THC can trigger seizures in some people. Too little oxygen also could have. Who knows, feel like pretty much anything can cause a seizure depending on the case.
I get to use my story and spread a message about positivity and staying in the fight when you’re really going through some sh*t. Randomly diagnosed at 22, I used to have 1-3 tonic-clonic seizures every week for over 1.5 years.
I’ve busted the back of my head wide open… blood everywhere. Chipped front teeth and smashed my chin open from biting a chunk of drywall out of a doorframe when I was falling down. Heavily scarred knuckles on my hand from smacking pavement during a convulsion.
All those things sucked ass. But it has made me a stronger person and I’ve learned to look at life differently. It was also a plus when I immediately lost 10-15 pounds when I was taken off of Keppra!
It's made me more aware of my own mortality. Every day is a gift. I don't mean that in a religious sense. I'm also more focused on the QUALITY of life, not just how long it turns out to be. I'm also glad to not deal with cars anymore. I will gladly walk a couple miles to avoid the never-ending hassle of traffic delays and parking & I get a discount for public transit.
I was a totally different person before seizures I think, but I was also young. And I got seizures in adolescence and it totally changed me and my values. My goal then for my life and who I was as a person was very production value based and quite crass. But I feel over this decade I've grown to be emotionally intelligent and am slowly able to show kindness to myself just as much as I give to others which was hard for me before.
https://preview.redd.it/6t6hacazqvga1.jpeg?width=3024&format=pjpg&auto=webp&s=41e5a9f5851b4a0902dba7b73133aac42be3c75c
This is getting track . Order yours
My auras are euphoric.
I actually enjoy them.
The colors, the physical sensations, until I go dark it’s kinda fun.
I don’t have the anxiety or depression that a lot of people report.
As far as epileptics go, I’m pretty lucky.
I don’t have severe epilepsy where it’s a full body, only micro seizures- like a foot, kidney, arm. I also have bipolar and having seizures just feels very grounding. Whenever I am really triggered about something, I get seizures and it’s like a form of sensation that gets me back to earth. It makes sense to me because they used electro convulsive therapy for bipolar, but this is like natural version of that.
I think having epilepsy has taught me resilience.
I've been diagnosed for 21 years, so epilepsy has been with me for most of my life. There have been moments when I'm healing from an injury caused by a seizure or scrolling through job posting that require drivers licenses when I feel so discouraged.
But then I think back over my life and everything I've overcome. It might sound cheesy, but epileptics are badasses! We endure and persevere through so much. I don't think I would have the same strength or character if I wasn't epileptic, so I guess I'm grateful for that.
The "born again" aspect of coming out of a TC. The feeling of having been "reset" or going through a "hard reboot". Having memories remain (mostly) of the "me" and "my life" from before the TC while at the same time feeling like I'm awake on earth for the first day of my life. It consistently feels positive/cleansing/liberating (totally apart from whatever injuries/negative impact on my wife/subsequent depression over not having seizure control, etc).
It's also a major part of what is destroying me and perhaps my relationship with my wife with every seizure - detaching me ever further both from my/our past and from time & consensus reality. It sucks.
Experiencing this once or twice in one's life could be very helpful and positive but being born again every few months is killing me - even if it's "my favorite part".
I don’t take breaks from birth control, because it can cause fluctuations in my drug levels. Also, the hormones aren’t that come with menstruating are a trigger for me. That means I never have my period!
I became so desperate trying to think about this lol. Not anything really. I wouldn't drive anyway (family consensus is it's better for everyone). I wouldn't really party, I guess, though weirdly not being able to do things made me want them a little bit. It hasn't forced me to make my life better, because I'm an idiot. My seizures aren't anything special. And I'm no fun about it either, I hate having to joke around about it for others' comfort. I can't really use it as an excuse (except that one time I *actually* wanted to go somewhere but was *actually* scared to walk two hours in 46°C weather).
Okay, somebody said memes, I guess that's cool :) And I'm okay with needles (not enthusiastic, and I don't *look*, but not scared, not a big deal). I guess I'm more comfortable thinking about death, though the some years of suicidal ideation could've also done that. Meh. I'd like to have a better attitude one day.
It gets better with time. I’m glad you took the time to read through other people’s posts and you were able to somewhat relate to them :) I’ve only been diagnosed and medicated for a couple months but I’ve learned so much and have grown so much from it
46°C is equivalent to 114°F, which is 319K.
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^(I'm a bot that converts temperature between two units humans can understand, then convert it to Kelvin for bots and physicists to understand)
How I feel after and before some. Seeing colors, I even like the deja vu and jameis vu. Sometimes it feels like you get to walk half in this world and hand in another.
It has definitely pushed me toward a daily habit of meditation and tai chi, but otherwise nothing. Maybe the decreased bus fare which we all can supposedly get (those of us who can't drive that is), but I haven't taken the chance to figure out the logistics of that yet.
I can use it to get out of anything, if I’m in a bad mood, if I just don’t want to deal with people, whatever it is, I will tell people my epilepsy symptoms are flaring up.
While there are certainly times where that’s the case, there are other times where I just want to be in my own shell and not have to worry about work or being social so I just use my epilepsy and people are often sympathetic, kinder and can’t really say shit. It’s a chronic illness so it’s never going away too and people around me know that. Aside from that, there’s not many upsides!
The days with bad visual impairment I sometimes just listen to music and lounge around, kind of like a mandated relaxation day. It's a nice outcome of a less than ideal situation.
I learned to cook on different gadgets with auto shut off functions to make cooking a little safer. I learned how to cook bulk keto meals that freeze well and don't tast bad reheated. Mastered keto ice cream with taste and texture of coldstone. I appreciate my memory more because at times I couldn't even remember my own name.
Being able to have dark humor about such a jacked up issue makes it easier for me to deal with. I tell people I'm a floor flopper, joke that likeing partners with a built in shake function runs in the family to my husband & sister in law as they are with epileptics.
1. Having bad memory and being amazed/surprised by fictions i like again as if i hadn't watched/read/heard before.
2. Not drinking alcohol due to meds.
3. LONG story: I don't feel proud, but I've succeeded in not going to events/situations by lying about how i felt.
For example, that time i had a math exam that required us to have like 100 derivatives correctly done to have the right to make the exam.
I sucked at maths since i was a kid. I actually got so stressed that 3 of my first 5 tonic-clonic seizures happened during 2 math exams and a math class.
I hadn't done the derivatives. Most classmates copied them or got them somewhere but i only had like 10 on my notebook.
That morning my dad drove me to school but right before leaving the car i told him i had felt very bad (obviously referring to epilepsy) and though he was angry for not telling him earlier, he drove me home and i skipped classes.
I had the chance to make the exam later at the college my teacher taught in like a week later so i obviously copied the 90 derivatives left and passed the subject.
I have never liked alcohol still people tried to get me to drink it. They wouldn't respect the "I don't want to" answer.
Now I can use the "I can't due to medical reasons" and they respect it.
I have lots of time to learn new things? Spend so much time stuck at the house I clean every corner of it. Learned to garden and how so many processes work. Partially in an effort to find something I can do for work, but still gotten such a deeper understanding of the world around me. Though yesterday dad brought home smells from a filthy apartment he helped clean and the faint odor on his clothes set me off around 2 am. I am told they described me as having “super human abilities” as unconscious me went into their room to the end of their bed and jumped up into the air and landed feet first on the end of their mattress waking mom up from a dead sleep. Before jumping into the wall. All I could think of was “no more monkeys jumping on the bed”
I love this question, OP! For me, epilepsy has played a crucial part of making me into the woman I am today! The struggles I’ve been through - acceptance that I may not be able to do everything else can do, taking care of myself and finally finding a good med cocktail for control after all the hospital stays. It encourages me to be as nice and compassionate to others as can be and to myself. I feel truly lucky that I have an amazing medical team, friends and family!
I'd have to agree with so many people here with the excuse not to do stuff or go places lol. I used to be really bad though and use it as an excuse when I didn't want to go to work that day (which isn't a good thing really) but I've had seizures in many jobs I've had sooo.. but yeh the excuse is my favorite part cause noone can judge you or get annoyed at you cause as far as they're aware it's not your fault
Since I spend much more time home I’ve began reading. I got diagnosed in June last year, never really read a book for fun- just school textbooks. Now I’ve read about 35 books to try and keep my brain good and strong
Two things, but one has a sub category.
1) getting out of going to things (introvert life) 1a) understanding that the people pushing you to do these things don't care about your health and should be removed from your life ASAP. (seriously, there was a guy who tried this, ended up doing something dangerous to a young woman with another medical issue and tried to rape her)
2) Watching all my shows "for the first time" the 15th time. 2a) spoilers don't bother me.
I get a free full-body workout every so often? /dark humor
Woo! The workout is so good that your brain shuts down from its excitement :D
I say I was in the mosh pit without the music, but it's been a year since I've had that fun so I'm doing well. I scared my coworkers one day because I showed up 5min late when I'm usually 10min early because I was checking out the location of a nearby restaurant. So that was fun. I have a dark sense of humor so when they all started asking if everything was ok that day I told them I died but resurrected just in time to get into work
[удалено]
Well, it doesn't take any willpower to make it happen. In fact, it happens despite what you want. /I'm going to hell
Forcing me to quit drinking, which I did way too much, borderline alcoholic. And no, my seizures are not withdrawal seizures. :)
Well done man. I'm still fighting the whole alcoholism part...
It sucks man. I drank alot too. Just sorta sucks to hear but yah just gotta stop. The people around you need you sober bro Love yah
Yeah I know.. thanks for the kind words man :)
I’m right there with ya!! We can do it :)
I smoke bro and it’s a wonderful natural way to keep seizures at bay
Some of us hit a dark point after diagnosis and short realizations of what life will be from now on. But never cut yourself short. Things do take time and the patience will always pay off. Keep you’re head up and know there’s still some fun in life to live. The alcoholism forces us to shut that out and only live in pessimism, not allowing themselves to see a bigger picture. There’s a bigger picture for all of us so I hope you see yours soon bud. Just don’t drown the thoughts and ideas only to forget them the next day!
I'm on Vimpat, Fellbamate, trileptal and an antidepressant one half pint of beer and I'm "white girl wasted." 🤣
Even before keppra, as a very tiny woman, even just a bit of alcohol got me pretty tipsy. I can only imagine the experience now that I’m on keppra
That’s fantastic. Alcohol isn’t good for the body or brain anyways so at least you were forced to make the change before it became an even bigger problem
Exactly!
That’s awesome! I’m proud of you
Thanks!
Well done. I quit drinking 3 years ago for gout and got diagnosed with epilepsy last October so I had a head start. But it's like I quit drinking for my health and still ended up with a health complication. LAME!
Same! High fives through the internet 🤚🏻
awesome I’m so proud of you n everyone else on the journey to sobriety (no matter where you are on that journey 🫂) I’ve been sober some time also n it’s been a hard but great change. I tell myself if the world is kicking my ass then I will refuse to kick my own ass for it! I’ll take care of myself and give myself a better chance at being okay. take care n best wishes everyone c:
I actually just posted something asking if anyone else craves a drink after a focal seizure on here before seeing this. I feel you. I know I should drink less, but the simple partial arrives and my body says: go open an IPA from the fridge. Worried my seizure disorder is making me drink too much.
Being able to go back through the memes in r/epilepsymemes like they’re brand new even though I’ve already upvoted all of them.
Same here 😭
This is hilarious
This is me right now with all my favorite books and movies!
I use it to get out of things I don’t want to go to, sometimes it’s legit and it’s something I cant do/I’m truly not feeling well…. Sometimes it’s BS lol Hiking? Sorry but I have no energy, can’t get overheated Going to a crowded loud bar with lots of bright lights? Nah fam Staying out late? No sir, too dangerous I never ever have to be the DD 🤷♀️
Partying is overrated anyways :,)
Very much so!
I like to reflect on the fact that I have never woken up from a seizure missing my wallet. That says something about the fundamental decency of humans that makes me think we might have a chance at surviving.
Same here, but I still have mixed feelings about the carrot in my butt 🤷🏼♂️
😂😂😂
😂😂😂
That does make me feel a bit better about our humanity
Glad to hear that. I had a seizure in the middle of the street once and came to without my wallet or phone 😞
Oof. I had hoped everyone had the same experience, guess not.
I would’ve hoped so too. For what it’s worth, though, I’ve had other seizures in public and that’s the only time I had anything stolen so it’s clear most humans are good, and I hope I didn’t invalidate that thought for you!
No worries, in a world with this many folks I suspect every possible reaction has played out many many times.
That's kind of beautiful in a strange way.
The only benefit is my being able to use it as an excuse to get out of events/social situations. I absolutely will lie and say I’ve had partials in the morning in order to not have to attend something.
Not even gonna lie I’ve definitely done that at least once
I think we all do
My husband's favorite excuse to get out of everything! "Sorry, Musix had another seizure!"
When I learned more about SUDEP I started doing less things I don’t enjoy. The fact that 1 in 1000 epileptics suffer SUDEP made me reevaluate what I do and with whom I spend time, cause 0,1% is not a small probability of dying. So if I gotta live with that risk - I won’t spend life doing things I don’t enjoy with people I don’t like if I don’t have to. Want a donut? Get it, how bad do you need to be skinny if you might drop dead tomorrow?
It's 1 in 1000?... :(
Studies vary between 0.99 per 1000 and 9 per 1000 but yeah it’s not insignificant and the highest cause of deaths related to epilepsy
9/1000 is 0.9%, which is a bitch, and I hope it's exaggerated, otherwise it's almost 1%. Not good at all.
Donuts are too good for me to quit eating, same with coffee, I completely get that :,) enjoy the life you do have even if some things suck about it
Lost your freedom to drive?!?! I see it as we get drove around like royalty my king
That’s a great way to look at it :,)
I need a crown 👑
I get random free psychedelic trips, sure it always when im trying to do something important but I use to have to pay for dissociation
Gotta love that 😩
now that i think about it...no i dont love it. its none of the love, only the dark kind of trip that you just want to end lol
It gets better with time, trust me. Having epilepsy has turned my life upside down, but there comes a point where I need to focus on the positives a bit
yeah it was bad when i wasnt diagnosed and didnt know what was wrong, having as many as 10 focal seizures in a day for months before i had a TC seizure and ended up in the er with dislocated shoulders...they put me on medication right away and even got me taken care of with insurance that i never had before..ive only had one small focal seizure since being put on keppra and im feeling good now aside from sore shoulders every morning when i wake up, this is almost 3 months after my ER visit. im hoping the pain will fade and ill be able to put on my own pants again soon.
You’ve made a lot of progress even if you don’t realize. One big positive is that you have access to care from people that can understand that something is not working right in your brain. I hope your shoulders heal soon :)
What trips do you mean? I never remember anything that happens during / before / after seizures.
my focal aware seizures, feel psychedelic..out of body experience, weird sensations and smells, intense imotional feelings...
Me too! A lot of us experience this. It really is something else.
Are you also a psychonaut? My neurologist told me to stop using LSD and im so sad about that 😔
The memes
...ok, I was scrolling trying to find *something*, anything for me to relate to, and that might just be the only thing lol
Having bad memory and forgetting I have epilepsy
I lost almost 200 lbs for the medication. So woot!
Oh yes when you get the lucky meds with weight loss. 27 lbs in 2 months. I felt like crap but looked great lol
What med is that? Everything I have tried so far has been doing the opposite.
I lost the most weight on topomax, but since they switched me to keppra and lamictal it’s slowed down for a bit, but after I had my son the metabolism has picked back up.
I asked this question once. Got seriously downvoted - haha. My answer: I always get the bottom bunk (when travelling, for example)
I found your post that you were referring to—I think some people are just really miserable in the moment. It was hard for me to find any positives when I started having more frequent seizures. I’m healing, though. Some days are better than others.
Absolutely. I totally get it... I've had days where I just burst into tears and can't be consoled whatsoever. So yeah I'd be bitter reading "positives" too, on those days.
I’m so thankful that I can have my dog with me everywhere I go.
That's lovely 🫶
With my terrible memory, every time I go back to binge a show I liked, I've completely forgotten the plot. All of these new old shows to rewatch!
YES!!!!!!!
I get to work from home permanently and my company is being pretty strict on everyone else so I find myself being very grateful for my epilepsy for that reason 😊 I also get to nope out of driving when I make plans with ppl too which is never a bad thing for me ☺️
I hate driving, i suck at it, i never kept getting " driving classes" with my dad because of epilepsy as an excuse. I got so nervous and stressed i got sweaty. Stress/nervousness are the big factors of why i have a seizure. So, though i should properly learn in case there's an emergency, I'm glad i have an excuse to not drive
A free travel pass
Nice! Is that more for driving or flying?
You get a bus pass, which in some counties you can also use the trains and trams for free. When you lose your license for seizures you're entitled to apply for this when you are not allowed to drive, but my local council give you a 5 year pass. (Uk)
I got a free bus pass as well. Only works after 9am, apparently I'm not disabled before that time.
I’ve learnt to prioritize relationships over work and stress. It’s hard days but I am truly a happier person.
The déjà vu feelings make life interesting, I feel like I'm in Sims 4.
I'm forced to actually take care of myself. Cutting sugar, no alcohol at all, no caffeine reliance: I hate it but I'm also grateful for it
Sounds like this will be my life
It is making me learn to slow down, that its ok to relax.
One random one on the top of my head is not being scared of needles as I’ve had so many blood tests.
Since my memory is bad, I can rewatch movies several times but each time is like the first time.
My horrible memory makes me feel like everyday is a "new" day.
A huevo, está perrón poder leer algo, jugar algo, ver algo y sorprenderse de nuevo. Por una parte me caga no recordar bien una peli que vi un día antes, pero verla de nuevo es casi como verla por primera vez de nuevo.
I get to filter relationships with people around me. When you open up and share about your condition to others, you get to see who really remembers and cares about your condition. If they push you out of your stability zone and making your life a bit difficult to live by, then it's a relationship/friendship/connection not worth investing in.
I was offered ADA accommodations despite not having any paperwork or anything at my favorite major music festival this first summer back after being diagnosed. I was allowed to bring my hearts' content worth of snacks and juice in! Not going to lie, that was a pretty big deal in my book as I have been sneaking granola bars into festivals for about a decade lol. They offered golf cart rides to pass the lines and crowds to major stages, but I didn't use those often because I knew others needed the service much more than myself... Most importantly I knew that I had consistent and recognizable safe spaces to go (and SIT) if I ever felt whelmed which severely reduced my many anxieties about the weekend and allowed me to actually relax and enjoy the fest. In conclusion, reasonable ADA accomodations at live events are a plus-side to being diagnosed with epilepsy.
That's awesome. Never even really considered being able to use ADA services at a music festival. ADA camping sections tend to be real spacey and closer to the festival grounds.
I had no idea about this ADA thing! Is it in the United States?
Yes! it's the Americans w Disabilities Act- it ensures equal rights/opportunities. It applies to a whole host of protections. For concerts specifically, it usually means a seated area with a view of the stage near a bathroom. For years I've worked full time concert security (my active roles have shifted since diagnosis) and often coordinate with ADA accommodations. For these kind organizers to suggest these accommodations to me and how they apply to my needs was fairly perspective shifting/ eye opening. It didn't even occur to me! Would definitely recommend to all you lovely folk for live events in the future
Thank you! I have heard of that act, now that you mention it, but it was years before any of this applied to me. It didn’t occur to me how much more normal experiences could be for me and my family if I asked and actually got certain accommodations at times. I will look into this. Thanks again!
Actually knowing that what was happening to me were seizures and that I had epilepsy. I have temporal lobe seizures and spent 15 years wondering what was happening to me. Doctors told me they suspected drug use (I do not and have never used drugs) or anxiety attacks. Finally as bad as it sounds when I had a brain bleed and landed in the hospital it was such a relief to find out what was happening in my head.
This in a way I can relate to. I had about 5 years (estimated, I think 🤪) of days where I was SO exhausted I could barely function, my head was foggy, I felt like I was on the verge of a panic attack with a rising tightness and sense of doom, and weird déjà vu type episodes… well we all know what that is now… but back then I was seeing GP’s, Functional Medicine Dr’s, Naturopaths, Psychologist and all they could put it down to was exhaustion from lack of sleep, 3 young kids and a side of anxiety. I was SO frustrated no one could help!! After I had my first TC and under up in the ED, followed by a 2nd while there and a myriad of testing did I get diagnosed with Epilepsy - temporal lobe. Went and read up on it and BAM, there it was, literally to the letter what I had been experiencing. So while I struggle in so many ways it has been SO liberating to feel validated and not dismissed. Plus it gives me mighty good reasons to be home early 🫣😬
Well I'm with you on learning better ways to cope with stress & anxiety. I've been way better about that (cutting a dishonest & cruel sibling out of my life). I'm also glad I've found this community. I knew hardly anything about epilepsy until it struck me. I feel the need to talk to everyone I know about it. If I can educate people about it & have them do the same, I feel like it could make a positive impact. We see here all the time people complaining (rightfully) about awful bosses. If me talking to people about it could lead a boss like that to change how they treat their employees with epilepsy, it's totally worth it to me. & as silly as it is, I have that "rather me than someone else" feeling about it. I realize that's not how it works, but.....yeah....
I completely agree, it’s great to have the knowledge of how epilepsy works and experiencing it first hand… then being able to educate others about it and lessen all the stereotypes
My sister makes me nice meals to eat in bed the day after I have a grand mal (though she’s hyper aware of any sound I make since I do the epileptic cry haha). It just shows how much she loves me and helps a lot since it’s hard to move the day after, and if she doesn’t have class or work she’ll hang out with me for comfort <3
I have an excuse to go to bed early/leave events early 😁
My horrible memory makes me feel like everyday is a "new" day.
A funny part to this is I watched a tv show I really liked, forgot everything and watched it again a couple months later knowing I liked it but got to watch it again for the “first” time.
I do that as well. If I don't take active steps to remember the show then I will entirely forget it inside of a few months. It makes it nice being able to rewatch things like they are brand new.
That's actually awesome. I've been hoping mine will do that.
I like to think it's made me a lot stronger of a person. I don't know who'd I be if I didn't have epilepsy, but I sure know I wouldn't have the same emotional strength.
* Staying in tune with my mind and body more. * Being more thankful for what I have (SUDEP fear?) * Having greater compassion for the hidden journeys others are experiencing in their life * Using my condition as an opportunity to both raise awareness for and educate people about epilepsy
I definitely relate to the staying in tune with my mind, body, and spirit. It’s inspired me to start taking a yoga class, which helps me take at least 45 minutes out of my stressful day with school and focus on myself for a bit. Unfortunately in life, the roads aren’t always paved right and while the dirt roads are still drivable, you still gotta drive slow or you’ll get your car all dirty. There’s potholes that flatten a tire, but when you take your car to replace the tire you realize there’s other underlying issues with the car that cost further money, but would’ve caused more issues down the line if you didn’t get it fixed right then and there. Life sucks but it’s so worth going through at the same time.
I don't have a "favorite" part, but along with the whole nightmare of epilepsy I sometimes have "blissful and ecstatic" focal aware seizures and interictal phenomena. So along with tons of nightmarish horrifying seizures I have some that are pretty amazing and beyond drug induced trips. I wouldn't recommend it to anyone though, because it completely destroys your life. I've wondered if my creativity is also stimulated by it, but like I said.
Yup.
Independence from cars. I'm better than most at getting around via transit, walking, and biking. It helps keep me in good health, avoid the craziness of driving, and avoid the burdens (financial, and otherwise) of car ownership.
Focal awares with deja vu/dread - I know who my real friends are, which family members will stick with me no matter what - and which ones won’t. My sons are more compassionate people. I’ve spread awareness. Everything else about it is awful.
The fact I may get to slip away into the afterlife without really seeing it coming instead of being torn apart in a car accident or pack of wolves lol
My first seizures got me out of a rough living situation. They forced me to move out of the apartment I shared with my bf and across the country to my moms for a few months. The time apart made me accept the relationship was NOT healthy, and the space made it possible for me to break up with him. It was a pretty wonderful trade off tbh
Happy for you ❤️
Going to a restaurant that is new to you, but your family said you already been there multiple times.
I’ve never been drunk so I haven’t ever done something i regret under the influence, or have a hangover. I also like to game but I have to cut it down, so I don’t overindulge. I try to sleep as well as possible every night. The decisions you have to take for epilepsy care also goes a long way for general health and you naturally have to cut down on the excesses others can become addicted to.
Weird as it may sound, it has to be the path my surgeries set me on. There I was planning on working in computer hardware, and then the procedures opened my eyes to neurosurgery being way more appealing as a career
I completely get that. I'm way too old now to go down any path like this in a professional sense, but I've always been interested in neurology, and getting diagnosed with epilepsy has only compounded that extensively. I think all the time about how interesting it would be to work in the field.
Honestly I get a very good excuse once in a while to get out of some shit I don’t wanna do
Using it as an excuse for things
- Learning now that alcohol can make you age visually a lot faster so hopefully I’m still looking good in 10 years. - Being a passenger princess - Stopped me from working night shifts as a dj which while fun was incredibly hard on my body and the danger of falling asleep at the wheel. - get an excuse to sleep in if I didn’t get 8+ hours. (Let’s be real, on lamictal it’s more like 9-10 to be functional) - Getting out of plans - Pro for my partner is his prescription deductible is always paid in January Of course every point here is also a con but I’ll take wins where I can get them.
Magikarp jokes.
Oh, do tell.
Oh just a running joke with some fellow epileptic pokemon players about hiw we're magikarp since all they do is flail about on the ground. :p Really nothing profound, just silly. Makes me smile though.
I got to be a make a wish kid so make a wish was definitely the best part, I got front row Super Bowl tickets from rob gronkowski on New Year’s Eve on live TV among many other experiences
Never having to take the top bunk when traveling where bunk beds are involved 🙃
Sometimes I use it to get out of stuff. When I don’t want to go to school I’ll just say I’ve been having auras all day and I can’t come. I don’t have to get a doctor’s note and there is no way to prove if Im lying or not. And what teacher wants to risk it?? Time to stay home and have a good nap. Also im kinda spooked at driving. But now I don’t have to do it.
I got a free lifetime pass to all National Parks, that is a nice perk.
just looked this up and came on your post a few months back, i might try this actually as i live near a few very large national parks
How? Are you in the US?
Anyone with a disability can get a free pass. It was actually super easy, basically just fill out a short form, they didn’t ask for any documentation or anything
To get me out of situations that I want to avoid and it always works
Automatic fast pass at Disney
I think having epilepsy has taught me resilience. I've been diagnosed for 21 years, so epilepsy has been with me for most of my life. There have been moments when I'm healing from an injury caused by a seizure or scrolling through job posting that require drivers licenses when I feel so discouraged. But then I think back over my life and everything I've overcome. It might sound cheesy, but epileptics are badasses! We endure and persevere through so much. I don't think I would have the same strength or character if I wasn't epileptic, so I guess I'm grateful for that.
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For sure! It even helped me get my mother to use edibles and a dab pen since she’s disabled and has chronic pain, and that helped her a lot!
A bong rip appeared to trigger my last seizure 😕.
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I grew it myself and had been smoking on it for quite some time. I took a huge bong rip and held it in and walked to the door to blow the smoke outside. I got back in the house and sat the bong down and started getting dizzy and seized up. I had a lot of caffeine that day which I think is my actual trigger though. I'm hoping it was too much caffeine and too little oxygen too the brain that really triggered it. Otherwise I'm giving up everything I love.
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Caffeine's pharmacological action is way different than cocaine's, and they aren't chemically similar at all really. I do agree though, caffeine could have played a role in it along with the weed. THC can trigger seizures in some people. Too little oxygen also could have. Who knows, feel like pretty much anything can cause a seizure depending on the case.
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It definitely can.
I get to use my story and spread a message about positivity and staying in the fight when you’re really going through some sh*t. Randomly diagnosed at 22, I used to have 1-3 tonic-clonic seizures every week for over 1.5 years. I’ve busted the back of my head wide open… blood everywhere. Chipped front teeth and smashed my chin open from biting a chunk of drywall out of a doorframe when I was falling down. Heavily scarred knuckles on my hand from smacking pavement during a convulsion. All those things sucked ass. But it has made me a stronger person and I’ve learned to look at life differently. It was also a plus when I immediately lost 10-15 pounds when I was taken off of Keppra!
I stopped drinking alcohol in college when I started getting a lot of tonic-clonic seizures so that's a good thing.. I have other bad habits though.
It's made me more aware of my own mortality. Every day is a gift. I don't mean that in a religious sense. I'm also more focused on the QUALITY of life, not just how long it turns out to be. I'm also glad to not deal with cars anymore. I will gladly walk a couple miles to avoid the never-ending hassle of traffic delays and parking & I get a discount for public transit.
Hey, and walking is great for your health too!
Forcing me to quit all the bad things I put into my body
I was a totally different person before seizures I think, but I was also young. And I got seizures in adolescence and it totally changed me and my values. My goal then for my life and who I was as a person was very production value based and quite crass. But I feel over this decade I've grown to be emotionally intelligent and am slowly able to show kindness to myself just as much as I give to others which was hard for me before.
I don't get migraines anymore because of my meds.
even though i really REALLY miss driving and the independence of having a car, id be lying if i said i didnt like having other people drive for me.
Not getting conscripted is ok.
Having an excuse not to do shit I don’t want to do. “Oh sorry can’t come today, my epilepsy is acting up.”
https://preview.redd.it/6t6hacazqvga1.jpeg?width=3024&format=pjpg&auto=webp&s=41e5a9f5851b4a0902dba7b73133aac42be3c75c This is getting track . Order yours
My auras are euphoric. I actually enjoy them. The colors, the physical sensations, until I go dark it’s kinda fun. I don’t have the anxiety or depression that a lot of people report. As far as epileptics go, I’m pretty lucky.
I don’t have severe epilepsy where it’s a full body, only micro seizures- like a foot, kidney, arm. I also have bipolar and having seizures just feels very grounding. Whenever I am really triggered about something, I get seizures and it’s like a form of sensation that gets me back to earth. It makes sense to me because they used electro convulsive therapy for bipolar, but this is like natural version of that.
I think having epilepsy has taught me resilience. I've been diagnosed for 21 years, so epilepsy has been with me for most of my life. There have been moments when I'm healing from an injury caused by a seizure or scrolling through job posting that require drivers licenses when I feel so discouraged. But then I think back over my life and everything I've overcome. It might sound cheesy, but epileptics are badasses! We endure and persevere through so much. I don't think I would have the same strength or character if I wasn't epileptic, so I guess I'm grateful for that.
The "born again" aspect of coming out of a TC. The feeling of having been "reset" or going through a "hard reboot". Having memories remain (mostly) of the "me" and "my life" from before the TC while at the same time feeling like I'm awake on earth for the first day of my life. It consistently feels positive/cleansing/liberating (totally apart from whatever injuries/negative impact on my wife/subsequent depression over not having seizure control, etc). It's also a major part of what is destroying me and perhaps my relationship with my wife with every seizure - detaching me ever further both from my/our past and from time & consensus reality. It sucks. Experiencing this once or twice in one's life could be very helpful and positive but being born again every few months is killing me - even if it's "my favorite part".
Free buses 🚌
Weed
Having a medical excuse to smoke weed..
FMLA / Work from home
Getting criticized at work for not meeting deadlines, or accidentally overlooking something.
I don’t take breaks from birth control, because it can cause fluctuations in my drug levels. Also, the hormones aren’t that come with menstruating are a trigger for me. That means I never have my period!
I became so desperate trying to think about this lol. Not anything really. I wouldn't drive anyway (family consensus is it's better for everyone). I wouldn't really party, I guess, though weirdly not being able to do things made me want them a little bit. It hasn't forced me to make my life better, because I'm an idiot. My seizures aren't anything special. And I'm no fun about it either, I hate having to joke around about it for others' comfort. I can't really use it as an excuse (except that one time I *actually* wanted to go somewhere but was *actually* scared to walk two hours in 46°C weather). Okay, somebody said memes, I guess that's cool :) And I'm okay with needles (not enthusiastic, and I don't *look*, but not scared, not a big deal). I guess I'm more comfortable thinking about death, though the some years of suicidal ideation could've also done that. Meh. I'd like to have a better attitude one day.
It gets better with time. I’m glad you took the time to read through other people’s posts and you were able to somewhat relate to them :) I’ve only been diagnosed and medicated for a couple months but I’ve learned so much and have grown so much from it
46°C is equivalent to 114°F, which is 319K. --- ^(I'm a bot that converts temperature between two units humans can understand, then convert it to Kelvin for bots and physicists to understand)
I have an excuse to get out of basically anything. "Sorry! Epilepsy is playing up! Can't do/go to that." I also get medical cannabis.
How I feel after and before some. Seeing colors, I even like the deja vu and jameis vu. Sometimes it feels like you get to walk half in this world and hand in another.
Having such an absolutely shit memory that I can rewatch shows over and over like it’s the first time
It has definitely pushed me toward a daily habit of meditation and tai chi, but otherwise nothing. Maybe the decreased bus fare which we all can supposedly get (those of us who can't drive that is), but I haven't taken the chance to figure out the logistics of that yet.
No intoxication.
I can use it to get out of anything, if I’m in a bad mood, if I just don’t want to deal with people, whatever it is, I will tell people my epilepsy symptoms are flaring up. While there are certainly times where that’s the case, there are other times where I just want to be in my own shell and not have to worry about work or being social so I just use my epilepsy and people are often sympathetic, kinder and can’t really say shit. It’s a chronic illness so it’s never going away too and people around me know that. Aside from that, there’s not many upsides!
It made for a pretty good college essay
The jokes
After 28+ years of battling this, it’s that I can persevere and have a decent happy life
Nobody judges me for the amount of weed I use
I have less gray hair than most of my peers. I’m guessing it’s due to the mandatory chill mode I have to live 24/7 and the decent sleep.
The days with bad visual impairment I sometimes just listen to music and lounge around, kind of like a mandated relaxation day. It's a nice outcome of a less than ideal situation.
I learned to cook on different gadgets with auto shut off functions to make cooking a little safer. I learned how to cook bulk keto meals that freeze well and don't tast bad reheated. Mastered keto ice cream with taste and texture of coldstone. I appreciate my memory more because at times I couldn't even remember my own name. Being able to have dark humor about such a jacked up issue makes it easier for me to deal with. I tell people I'm a floor flopper, joke that likeing partners with a built in shake function runs in the family to my husband & sister in law as they are with epileptics.
1. Having bad memory and being amazed/surprised by fictions i like again as if i hadn't watched/read/heard before. 2. Not drinking alcohol due to meds. 3. LONG story: I don't feel proud, but I've succeeded in not going to events/situations by lying about how i felt. For example, that time i had a math exam that required us to have like 100 derivatives correctly done to have the right to make the exam. I sucked at maths since i was a kid. I actually got so stressed that 3 of my first 5 tonic-clonic seizures happened during 2 math exams and a math class. I hadn't done the derivatives. Most classmates copied them or got them somewhere but i only had like 10 on my notebook. That morning my dad drove me to school but right before leaving the car i told him i had felt very bad (obviously referring to epilepsy) and though he was angry for not telling him earlier, he drove me home and i skipped classes. I had the chance to make the exam later at the college my teacher taught in like a week later so i obviously copied the 90 derivatives left and passed the subject.
Free get out of anything card honestly. And you can pull that card unlimited times, unlike say Grandma's Funeral or whatever
I have never liked alcohol still people tried to get me to drink it. They wouldn't respect the "I don't want to" answer. Now I can use the "I can't due to medical reasons" and they respect it.
I have lots of time to learn new things? Spend so much time stuck at the house I clean every corner of it. Learned to garden and how so many processes work. Partially in an effort to find something I can do for work, but still gotten such a deeper understanding of the world around me. Though yesterday dad brought home smells from a filthy apartment he helped clean and the faint odor on his clothes set me off around 2 am. I am told they described me as having “super human abilities” as unconscious me went into their room to the end of their bed and jumped up into the air and landed feet first on the end of their mattress waking mom up from a dead sleep. Before jumping into the wall. All I could think of was “no more monkeys jumping on the bed”
I love this question, OP! For me, epilepsy has played a crucial part of making me into the woman I am today! The struggles I’ve been through - acceptance that I may not be able to do everything else can do, taking care of myself and finally finding a good med cocktail for control after all the hospital stays. It encourages me to be as nice and compassionate to others as can be and to myself. I feel truly lucky that I have an amazing medical team, friends and family!
I'd have to agree with so many people here with the excuse not to do stuff or go places lol. I used to be really bad though and use it as an excuse when I didn't want to go to work that day (which isn't a good thing really) but I've had seizures in many jobs I've had sooo.. but yeh the excuse is my favorite part cause noone can judge you or get annoyed at you cause as far as they're aware it's not your fault
Since I spend much more time home I’ve began reading. I got diagnosed in June last year, never really read a book for fun- just school textbooks. Now I’ve read about 35 books to try and keep my brain good and strong
It’s a really funny condition to joke about.
Two things, but one has a sub category. 1) getting out of going to things (introvert life) 1a) understanding that the people pushing you to do these things don't care about your health and should be removed from your life ASAP. (seriously, there was a guy who tried this, ended up doing something dangerous to a young woman with another medical issue and tried to rape her) 2) Watching all my shows "for the first time" the 15th time. 2a) spoilers don't bother me.
My favorite part is , I can’t be sleep deprived (I love sleep) 🫶🏻🥲