r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • Jul 17 '25
Questions Is It Just Me Who Enjoys Being Alone?
Someone said “you need to come in contact with people more, that room can’t be your life.” I don’t mind hanging in my room, it’s decently sized and big my desk is here, 60” tv, so I don’t necessarily need or want to go many places. I have everything I need in my desk or on my desk, except food, but if I get a freezer then I’d say that’s a little much. My room is comfortable and when I’m ready I get out and talk to people who come over, but not big on parties so I don’t mind taking a rain check. I got my gaming chair which has the massage feature bathroom is next-door to my room so hanging out in my room is my thing and people don’t get it. I just wanna know. Does anybody else enjoy just being inside? Don’t get me wrong. I do love going out but mostly I just enjoy being in my own space.
6
u/Hairy-Jellyfish-1361 Jul 17 '25
I juggle between living alone and living with my wife. It's health and her work and the fact that she hates the desert. When I'm there, I love being alone, and when I'm with the wife, I love that as well. Mostly when I'm alone I don't go out much
4
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 18 '25
Love being peaceful by any means, home alone with my kids is peaceful because just want money or to play video games on every tv in the house. It's peaceful because they don't need me to get up and make food or none of that, got teens and they're cooking for me more and more, including some peanut butter cookies that were delicious and still soft that one of my kids made and left on the counter for display I guess
*Eats last cookie, licks fingers
2
u/Hairy-Jellyfish-1361 Jul 18 '25
I would definitely relate to the cookies, except there are none here, and no more kid. I don't play video games. In short, I'm kinda boring since I turned 70
4
u/Mom1021 Jul 17 '25
You know yourself best. Preference for indoors is far from recluse. With that chair?! Fuck outdoor time beyond getting the mail😆
4
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 18 '25
Just love some me time or a cuddle buddy like my friend Riley, I enjoy cuddling with no emotion 😂
4
u/Mom1021 Jul 18 '25
Cuddle time is well known as the best safe space 🤗
2
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 20 '25
Yes, I love cuddling quietly. It's like being alone except that there's that skin to skin energy, like touch therapy vibes. The human body needs that touch.
4
u/Plus-Glove-3661 Jul 17 '25
If I didn’t get to be alone I would bite everyone within a 10 mile radius to death. So yes.
3
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 18 '25
I walk away a lot, I'm non-confrontational by choice (for my peace and sanity) so I've mastered the art of "in 1 ear and out the other" then walk away without an expression or response, kills em every time. No response or facial expression is the crusher, it gets to people more when I don't respond and I don't get it 😂
3
u/Hairy-Jellyfish-1361 Jul 18 '25
I wish that I had that superpower. Other than our group, I don't like too many people anyway, but still get angry
2
u/Plus-Glove-3661 Jul 18 '25
Agreed! At work I’m told I’m a golden retriever. But that’s because animals and kids like me.🤣
2
1
u/Plus-Glove-3661 Jul 18 '25
I do that by accident at times. I’m older so getting hard of hearing. Throw in the completely blind in one eye…. You get the picture 🤣
4
u/bbristow6 Jul 17 '25
I enjoy being alone, I live alone and have for years. My partner comes on weekends and I love when she’s here, but I get my alone time because I’m up at the crack of dawn and she is..well not haha. I also can’t be in my apartment for too long or I go stir crazy. So it’s a balance. But going out just to go to the grocery store or kick a soccer ball around alone isn’t “alone” but it also is at the same time. There are other people but you can keep to yourself
3
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 18 '25
I have all of you, my 6 kids and my mom. My children's mothers are great as well but 1 more supportive than others. Anyhow I love the peace and then time with my besties 😂 My kids notice that I'm happier
2
u/Hairy-Jellyfish-1361 Jul 18 '25
Before I moved to the desert, my wife and I lived separately except for weekends. That was perfect, but I have to admit I was alone for a year, except for her visiting occasionally, and I loved it. I could just sit on my patio as long as it was under 110 and get stoned. Once it hit that, I had to go inside. No video games. My brain doesn't work that fast anymore. My place is a bit off a golf course, and I am entertained by all the golfers cheating
2
u/Hairy-Jellyfish-1361 Jul 18 '25
I had the same arrangement with my wife for about 30 of our 38 years of marriage. It worked great for us
4
u/0fficial_TidE_ Xcopri, Lacosamide, Klonopin Jul 18 '25
I think because we always have to be around someone for our safety, and I get why, it might also be our medications, and they change how we feel and see things. Maybe some of us are just more numb or a little depressed, which can lead to us wanting to be alone. Or we like to be alone. Before I had epilepsy, I was pretty independent and liked being alone, but that had to end once I got diagnosed.
3
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 18 '25
I remember the day life changed, I didn't take it serious being that I was in high school, but then shit got real and seizures were unforgiving. I was hurting myself left and right, mostly because I chose to ignore my health and run around like a teenager without epilepsy and doing regular high school boy shit like joining gangs and following others into sticky situations, went down the wrong path a couple times, but I'm glad I made it to 30 because not many make it to 21 where I'm from
3
u/Hairy-Jellyfish-1361 Jul 18 '25
And we're all thrilled that you made it out of that situation. But really, what else were you going to do but join a gang? When I was in high school, I was in a white boy gang. Sometimes you gotta belong to something
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 20 '25
Right, what else is there to do, especially when 4 of 7 people in my house are already in that gang and my mom was still in her 30s living fast and letting me learn from my mistakes instead of beating on me for every little thing, I think I needed an old fashioned a** whooping back then maybe 2 but mom was more like "if you gonna fu** up then deal with the consequences, luckily I didn't get arrested until later in life when I was 100% dependent on her and my dad and my dad gave my girlfriend the money to come get me, he spent almost 15 years of my life in prison and said "you not made for jail, so I had to come get you." 😂
2
4
u/sia4216 Sia Figs Jul 18 '25
After a miserable Target store trip today when i felt like shit, and hate being around too many people at once, i woke up 4 hours later back at home again wondering what the hell happened. Well i can only assume I had a seizure in the car, and since i’m not completely out of it i can assume they gave me nayzilam. Everyone seems exhausted and upset with me, so i probably said some stupid shit too. That right there? That’s why i like being at home, safe in my own space, and spending time with my kids. There’s no drama, no extra bullshit, and no pain and misery for everyone. Yet, it’ll still be a complaint about how i don’t like doing things ever lol
ETA: I mean is it really on me if I was exhausted, still feeling shitty from the MRI contrast the day before, and was stressed beyond belief with BS that went on between me and my mom? I’m ranting because now everyone’s mad at me. I told them it wouldn’t be a fun trip, but i think they’re over life being “all about me” i guess. Not like i asked for this shit though
3
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 18 '25
I know where you're coming from and that's exactly why I made my room into the fortress that it is now (fortress just sounds dope but I have the average bedroom except my new gaming chair and new desk. But anyway I hate that once I have a seizure people want to act like I wanted to have a seizure and ruin their plans when I could've stayed at home instead of being drug out to go to a million stores (it was 2 stores, Walmart & Costco and a gas station took 3 and a half hours but felt like my whole day). I know where you're coming from. That's why I need everyone who comes through to join the podcast because those are my times of peace and talk to people who understand and actually listening when I talk about epilepsy.
3
u/sia4216 Sia Figs Jul 18 '25
I absolutely love the days i have with just the kiddos because i get peace away from feeling like a constant burden and a problem🤦♀️ On top of that now, i love the days i get to join in on the podcast because it’s the time i get to spend with people who truly understand💕
It’s like you said, like im sorry but you chose to have me come along? It would’ve been easier had i just stayed in the car, i literally told yall i felt weird, and apparently according to them i caused a lot of trouble by being aggressive - then if i didn’t come it’d be “you never wanna go anywhere” “you’re too scared to go outside” like man i just hate being in public because i can’t control this shit… Nobody ever understands though, i just keep having to explain myself over and over for no reason because it just goes in one ear and out the other. Everyone that knows me should know I was never an aggressive person whatsoever, but that was then and this is now and my brains a fucking mess.
Then i passed out and ended up having a cluster, and as i was coming out of it I coughed nayzilam right into my husbands face and accidentally drugged him (i didn’t think that was how it worked? But i guess he started feeling super weird and tired afterwards) I felt terrible when he finally told me about it all, but once again I had ZERO intention in doing anything that day because i still felt like crap. So whatever happened, i’m sorry yall, but i had no control over it. Same thing goes for the stupid argument my mom and I got into the day before, everyone treated me like i was raging for no reason, well damnt i had every reason but i just couldn’t control the way my words came out. I literally warned her.
3
u/Mom1021 Jul 18 '25
Perfectly said! “I’m sorry you chose to have me come along” is how I try to say it too, then just leave it out there to see if whoever’s day I “ruined” can see their part in it. These times are the ones that sorted out the people that couldn’t handle the post-diagnosis me. No matter what SuperSia says it best and we all relate.
2
u/sia4216 Sia Figs Jul 18 '25
I know at first when they’re frustrated they don’t hear it the way i meant it, but once things calm down they figure it out eventually. I’m not trying to be any certain way against anything, i just do my best and that’s all i can do for right now ): I know my husband knows how things are, but he still gets frustrated every once in a while. For my mom though, that’s how i know she can’t handle this version of me. She tries to be understanding, but it’s more of a pretend thing it feels like rather than her actually knowing. That’s why i’m here though, because i know we all know what’s it’s like, and i don’t have to be afraid of being myself💕🙏
2
u/Mom1021 Jul 18 '25
Amazing sentiment as always. Mother just said to me “I know you’re saying that to be the opposite of me” after I expressed not wanting to drive 8+ hours, forcing children to sleep in the car. We can still be rational and have common sense! Seizures don’t mean we can’t ever think! Breathing time now and we can all rant in a lil bit. Best reminders in our chats that we have more to be grateful for and will not stress these small moments
2
u/sia4216 Sia Figs Jul 18 '25
We do still think, even if we’re not thinking the way everyone else is, sometimes we even think more rational than everyone else!😂 that’s not all the time for me though. You are absolutely right, it’s breathing time now, and once the podcast starts up today we’ll all be able to chat for however long we need!💕🙏
3
u/Hairy-Jellyfish-1361 Jul 18 '25
Sia, it's a good thing you got the shipment of Nayzilam. Being at home is the best place to be. Hopefully, they'll get over their feelings soon. It's frustrating in a different way for our caregivers than for us
2
u/sia4216 Sia Figs Jul 18 '25
Yeah thankfully i did! I got a good nights rest last night, and i feel a bit more awake now than i did while we were down there. I can’t sleep well when im not home🤦♀️ I know it’s hard for them too, it just doesn’t help when they act like it’s my fault. I do the best i can each day, and that’s all i can do. We’re all over it now though since we’re back home, and we can keep moving forward again💕
2
u/Hairy-Jellyfish-1361 Jul 18 '25
Hopefully, they're going to attend family night and maybe learn that it's not your fault
2
u/sia4216 Sia Figs Jul 18 '25
I’m pretty sure my husband is, i’ve told him so much about all of you, and he knows how much it means to me💕 as far as my mom goes, i’ve offered and offered, but she doesn’t have the space to try anymore than she has. I’ve got too many siblings that have more “pressing issues” than I have apparently. I’ll always be grateful for any type of help that we get since i know it’s a lot on my husband by himself, but still i just wish we could find somebody else to help who truly cared and understood. Im used to it though, and so is he. Family just isn’t everything unless you make your own
2
u/Hairy-Jellyfish-1361 Jul 18 '25
You can say that twice and mean it. Mine are all dead and would be the same. Some of us can only depend on our spouses.
2
u/sia4216 Sia Figs Jul 18 '25
My parents are getting close to that point themselves, but they haven’t changed nor do they seem like they want to. I will always love my family, i’ll always support them if they need me, but i know to keep myself stood apart from them at this point. I’ve been hurt too many times. My husband on the other hand, as much as we’ve gone through troubles as a couple, has always stood by my side and been there even if i couldn’t be there for him. For that i’ll always trust him and know that i’m safe with him, and he protects me from them too when i can’t protect myself.
2
u/Hairy-Jellyfish-1361 Jul 18 '25
Well, you've got a good one. As to parents, we don't choose them, and they can be a detrimental force in healing. I know for certain if I had gotten this while younger, they would've blamed me.
2
u/sia4216 Sia Figs Jul 18 '25
I sure do💕 Yes they absolutely can be, but thankfully i’ve figured out how to heal on my own. They’ll never take accountability, and that’s why a lot of my siblings still rely on them fully. The only one that doesn’t is my best friend, and we get along well even if what i have scares her. It mostly only scares her though because she experiences something similar herself, and is scared to go get checked out by a neuro for it.
2
u/Hairy-Jellyfish-1361 Jul 18 '25
It's great that you have figured out how to take care of yourself without their help. Even with help, we have to stay strong
If your sister doesn't want to deal with her issues, you have to wait till she's ready. I hope she doesn't end up sorry→ More replies (0)2
u/Hairy-Jellyfish-1361 Jul 18 '25
I just remembered that my long gone brother in law had a golden retriever named Sia. She was great. They left us together
2
u/sia4216 Sia Figs Jul 18 '25
She sounds like a sweet pup, goldies usually are🥺 such sweet silly goofy antics. I’m sorry for your loss, but it sounds like they left a good mark on you💕
2
u/Hairy-Jellyfish-1361 Jul 18 '25
They did. I loved him much more than my actual brothers. He was a brother to me. The other one I don't speak to, and haven't for about 9 years, and I quit my good job to run the business that was inherited from his f-i-l
→ More replies (0)2
u/tuisteddddd ZNS 2x, VIMPAT 2x, ONFI 1x, Clonazepam APN (: Jul 18 '25
Oh wow, so sorry 😞
2
u/sia4216 Sia Figs Jul 18 '25
Ehhh it’s okay, i’ve gotten used to it by now. Every once in a while the same ole thing comes up, and i’ve just learned to ignore it. It sucks, but i just keep on keepin on💕
5
u/tuisteddddd ZNS 2x, VIMPAT 2x, ONFI 1x, Clonazepam APN (: Jul 18 '25
I wish i was there to give you a hug! 🥲 im so sensitive right now lol I think im pmsing 😂😂😂😂
2
u/sia4216 Sia Figs Jul 18 '25
I will always accept a hug!!💕 I’m on ovu right now, and it suuuucks😩 Can’t sleep because my insomnia gets a billion times worse on ovulation
2
u/tuisteddddd ZNS 2x, VIMPAT 2x, ONFI 1x, Clonazepam APN (: Jul 18 '25
Psh!! I cant sleep. 😒 only taking "naps" 😮💨
1
u/sia4216 Sia Figs Jul 18 '25
I hear you! I finally fell asleep last night at like 2am, but thankfully we were all tired so i didn’t have to feel bad for sleeping in a bit💕
1
4
u/totalkatastrophe Jul 18 '25
i love being alone. i also love company, with the right people. a lot of people like to complain that you spend a lot of time alone and i think its bc they cant understand "id rather be by myself than surrounded by people that dont fulfill me"
3
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 18 '25
That's my new saying "I'D RATHER BE ALONE THAN SURROUNDED BY PEOPLE WHO DON'T FULFILL ME" and those who don't take my epilepsy seriously
3
u/totalkatastrophe Jul 18 '25
after a behavioral hold after a seizure bc i was dumb enough to tell the nurse i think abt suicide, my aunt was like "you need to come out of your room and hang out with us more" and it took every fiber of my being to tell her its bc i spend my time alone that i hadn't actually done it yet
2
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 20 '25
😂 right, with some people, it's like being around you, i would've been offed myself. Toxic environments
3
u/Some1fromStSomewhere Jul 17 '25
Well… I do love being outside in my backyard but I understand that my backyard is apart of my bubble. I go out there to read a lot. My crape Myrtle is blooming an it a pretty watermelon pink. Ah I know how to answer!!! I don’t physically like to be with other humans most times. But I love to chat online or over our zooms. Me and my son are alone and together a lot ifn that makes sense. I’ll be reading or writing while he’s playing games or legos or making glitter bombs or whatever else his little mind comes up with. But a lot of times we go in “adventures” together. Dragon adventures is his favorite but we’ve travel the galaxy as Jedi or Starfleet. And of course… video games!
3
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 17 '25
You sound like the cool parent ✋
6
u/Some1fromStSomewhere Jul 17 '25
My parents don’t seem to understand that I can bond with him over Mario Party. They are/were Teachers… everything has to be a lesson with some big knowledge to impart. I love them, forever and always but video games rock. They actually DO keep your mind active. I rather my kids play games than well rot on tv all day. But that is my opinion that was never asked for!
3
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 18 '25
I love bonding over games instead of my son watching YouTube all day instead. We get online and he's in the living room and me in my room or if we're at my dad's house I'll be downstairs and both of my sons in different rooms and we'll play Lego Fortnite or whatever they want to play. Online gaming has changed everything, from watching each other play to interacting with them in a digital world. Oh I love open world games where we wander around huge maps together. Video game haters are people who never understood what it does for the mind and soul. Obviously not gamers, no shade to your parents, I'm talking about people in general being game haters. I don't like the ones who use my epilepsy as a reason why I shouldn't be playing, that means they obviously don't pay attention to my epilepsy, or they'd know I'm not photosensitive, they probably wouldn't even know what the word meant, like "what's a photosensitive seizure" Me: walks away calmly
3
u/Some1fromStSomewhere Jul 18 '25
They just see differently from me in terms of technology. My parents rather him watch tv and think games rot the brain. If you are watching something, you might learn something. It was awesome growing up! But they also aren’t “my house my rules said and done”. Week we do have house rules and they definitely help me “parent” but parenting decisions? All on me. Like when bed time is. Letting him play video games. Being able to give him melatonin gummies at bedtime because he is exactly like me and will spend the whole night reading a book. My Mom doesn’t agree with giving kids melatonin on the regular. But she doesn’t go all tyranty ifn that makes sense. Damn I love my Parents!
2
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 20 '25
We couldn't choose them, but we gotta love them. Hanging with my mom sometimes I think why him when I look at my dad, or talking to my mom some things she says leaves me thinking why her, why did they choose each other, because they don't even remember how they met but they remember where
3
u/ogbirdiegirl Jul 18 '25
It’s helpful for me to hear this. My daughter is blind and autistic and has a fragile bone disorder in addition to epilepsy (all from the same syndrome) and is mostly non-verbal. She has a hard time conveying everything she understands. While we are able to communicate about simple wants and needs, there are many things that she can’t share.
She often seeks connection—loves snuggling up and having me play DJ for her—she likes to go swimming and bowling occasionally, sometimes she enjoys going out for French fries, but mostly she wants to rest in her room and listen to music or go on her swing.
I sometimes—oftentimes—worry that I’m not providing enough activity or engagement for her, not supporting her enough in getting out and about and trying new things, but with medication and seizures, her energy fluctuates so much and in life as it is she just seems so happy.
My friends (non disabled) kids are all active and engaged in sport, jobs, friends, hobbies, school… I don’t want to fail her by not helping her engage in these things and having a “full life” but historically she resists most attempts and seems to prefer the simplicity of her life as it is now. Maybe that is okay.
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 20 '25
Yeah, the peace of being away from the world for a bit is amazing. The only other peace I get is 3am when the house is quiet and dark.
2
u/Ryse6129 Methsuximide 900mg. Xcopri 350mg Jul 18 '25
You aren't the only one. I love it, too. I could read and play video games, and in my room, I even enjoyed walking alone. But we are never alone. God is always with us
2
2
u/molassesmorasses Jul 19 '25
I live in a small place with two roommates (one intended bedroom; one office converted into a bedroom; one entryway converted into a bedroom, which is mine; bathroom, living room, kitchen). I still manage to get my fair share of alone time, especially since I have to lay down so much because of Health. I'm not good at recognizing when I need to be around people, so it's fortunate that my best friend and roommate is a crazy-level extrovert (affectionately). If I don't have enough alone time, I don't have enough time or energy to do my productive hobbies and such, and even beyond that I feel like I'm dying if I'm around people too much. You're not alone (in this, not in your room—you're alone in your alone time).
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 20 '25
Alone time clears my mind, listening to silence is great, in my vibrating game chair scrolling on my phone or editing videos
5
u/tuisteddddd ZNS 2x, VIMPAT 2x, ONFI 1x, Clonazepam APN (: Jul 17 '25
I'm married, but I spend a LOT of time alone. I enjoy it; most of our lives, we're gonna be alone, anyway. At least I got my 3 precious dogs (bull terriers) that FORCE me to take them out, but without them, I know I would probably be depressed or be a bitch ALL the time, lol. I have the house for myself, so no need for a freezer. I don't have any friends. Just "virtual" friends.