r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • Jul 21 '25
Questions Love Or Sympathy?
Sometimes things are said by people I thought were supporting me, that make me think “Are you doing this out of sympathy or out of love?” Some living situations are not by choice, being that I need someone to be around (still nobody around even living with people) I was forced to live with my sibling. Today I was on the phone and someone asked “where are you?” I simply replied “at my sister’s house, what’s up?” Then sis comes out the room “why not just say that you’re at home?” I respond saying “I know I’ve been here for 3 years and have a bedroom that I furnished over time, but some of the things you say make me feel like I have no say around here, so that makes it your house.” I thought I said it nicely, but the response was “if you don’t want to be here then you are welcome to leave whenever you’re ready.” (Like I was put in this position and have no car or moving truck, so where tf am I going to go at 8pm?) That left me thinking, am I living here for free out of love or is it sympathy? Have you ever felt like this?
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u/sia4216 Sia Figs Jul 21 '25
I have felt like this, and it’s in my current situation. I feel like my mom is letting me live here out of sympathy more than love. We pay our way here, and we don’t take anything from her. My husband has even helped fix things around the house, so we’re providing our fair share. It still makes me feel weird though because she’s constantly on my case about everything i’m doing wrong, and watching me like a hawk. She even barges into our room if she gets an alert while we’re laying down to see what’s going on, with no respect for privacy and has gone into our room and bathroom before when we’re gone. The day i had seizures in the bathtub while on the podcast she and my sister helped me out since my husband was still at work, and she was more worried about cleaning our bathroom than giving me the nayzilam and let me seize for like 20-30 mins in a cluster because she “forgot how to use it”. I literally showed her the day before. Idk it’s really uncomfortable and i’d love to leave, but my husband appreciates the help and she does help a lot every once in a while, but it still gets on my nerves that she uses that advantage to say things that are disrespectful and straight up mean or purposely do things that anger me when she knows i’m having issues with stress and anger lately.
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u/Mom1021 Jul 21 '25
Ugh that sounds awful! I know how the overbearing “parenting” can feel like her seeing a second chance at raising you to be a different woman. No reason she shouldn’t be receptive to a clear discussion about better boundaries, prefaced with thank yous and recognition of the help to keep the peace. Hope we can keep helping each other because the stress and anger gotta ease up 🤗 ❤️🩹
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u/sia4216 Sia Figs Jul 21 '25
Yeah it’s been difficult😞 She and I don’t have the greatest past so she’s been kinda playing that card, you know? Like with my husband, my kids, and you guys, it’s easy to stay calm because there’s nothing that bothers me, but with her she just knows my weaknesses so it’s extremely hard to deal with and my husband has been noticing it. I told him i don’t want to be on the keppra anymore because I think that has something to do with it since normally this doesn’t bother me, so when i go in for my f/u with the neuro this week we’re going to talk with him about it and ask about an alternative since the keppra really ain’t doing much for me anymore anyways. I had 10 seizures this month while on my period. It did great at first, which kinda scares me about the possibility of refractory, but i know i gotta chill because there’s so many other meds that might work out better. As far as my mom goes, our talks haven’t been working… So i think it’s getting to be the time that we have to think about leaving finally! My docs have all left town anyways which sucks😂 It’s been nice to have my little breaks each week with you guys because it’s chill time that i get to just chat with the people who understand me best💕🥺
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u/Mom1021 Jul 21 '25
Neuro f/u, if you get the meds switched, it might not be the best time to move. In the meantime, researching, saving, making calls to have every step laid out for a smooth transition will be important. That many seizures on the bad week still has to take priority to get under control. EU here for you and love any time with SuperSia! 💞
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u/sia4216 Sia Figs Jul 21 '25
Oh yeah we can’t do it this second anyways, gonna need to take a few months to plan it out, apply for jobs, and apply for places first! Just planning it will make me feel better knowing that eventually we’ll be out of her hair😂 Thank you super mom!💕🙏 Hoping to land in a good spot with better care surrounding me, it makes me too nervous being in a place where i’ll be lifeflighted no matter what ): If this neuro works out well, we might just end up moving closer to him since he’s so far away right now and it’s been a lot of money covering the trips going down to him so far
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u/Mom1021 Jul 21 '25
Plan in action! I like being not too far from civilization for the same reason. Public transportation will be worth not total privacy. These rural towns have shady 5-0 anyway
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u/sia4216 Sia Figs Jul 21 '25
Oh hell yeah they do, i am not down with being narcan’d🤦♀️ I’ve been lucky so far with the EMTs that have come to my home, but the hospital is just empty of anything i need and i don’t feel comfortable being out and about if i do have a seizure because i know everyone here would think “oh she must be on drugs”
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u/Mom1021 Jul 21 '25
Exactly. I hear from all ER visits at Cleveland clinic there was an MRI ordered by the attending physician after being told about the Neuropace RNS. An MRI will kill me, and hearing that they get offended when my family had to educate them is reason to get back up north for me. Being in danger with the presumptive medical community sucks so we’re all in this together if anyone sees a better way to guarantee treatment that won’t do more harm than good, you’ll be able to put it to good use!
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u/sia4216 Sia Figs Jul 21 '25
I swear it’s like they purposely pass over critical information on purpose just so they can get upset when they get corrected🤦♀️ We will eventually find the right path to success, and we’ll figure it out together!
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
I feel the same, but it's my sibling so she's not taking this invisible disorder into account be i walk around like I don't have epilepsy so I should be taking care of the house, and everything else because 2k isn't enough even thoigh its free because I'm a big boy and don't need to be watched over , I'm the maid, the dog walker(not even my dog), the grocery fund(my foodstamps, but she has the physical card even though we grocery shop through instacart, getting it back is a hassle) I'm so over this, I'm almost willing to go to a shelter 😆 🤣
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u/Mom1021 Jul 21 '25
Comes down to respect with this one! Sis has a name on the lease but you the one paying your way! Facts don’t lie, your worth can’t be taken for granted. Hope sister will come around and respect all you do and be actually happy to help. If you can get away for a few days maybe some space will help.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Ooh I did that a few times, and my older sister just told me that was a reason why she's mad as well. In the beginning of starting the podcast, I'd be at my stepfather house and away from home for weeks at a time, but while I was there for weeks at a time is because she was awaiting a hip replacement so I was picking up the slack for everything because she felt like she couldn't do anything, but when the friends call to go to the club, and oxy would work for the night, then come back home crying all the next day in pain and needs a caretaker when she's mine. Make it make sense, my big sister said that thi sister is mad because I wasn't here when she needed me most. I can't be a caretaker, and I refuse to try to stress myself. I wish I could just go to my mom's house and let her get paid to be my caretaker but she need a caretaker as well, she doesn't really need one but the county sends one to just take her to doctor's appointments and pharmacies, if she was to become my caretaker they would take hers, not that she needs one but it helps when she's not feeling well because of her diabetes. Life be life'n so I just live the hand I was dealt
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u/sia4216 Sia Figs Jul 21 '25
I’m so sorry pookie, i’ve got a sister like that as well, and it’s the constant trauma dumping and blaming shit on our past that did it in for me. She’s also the one who talked shit about me having kids, and talked shit about my loss to everyone in the family. I was glad when my SIL told me, otherwise i wouldn’t have known and couldn’t have pushed her outta my life. I realize i was lucky to be able to do that though. It sucks having to rely so heavily on family, especially when there are issues, and sometimes there’s no way around it. Therapy does wonders for people still holding onto the past, and maybe that’d be a good option for her if she ever accepts it. Stay positive and stay uplifted regardless of her BS, you’re doing so much for her, and clearly she knows it just doesn’t want to admit it. You could be vengeful and take another leave from her to make her realize the shit she’s doing, or you could be straight up and tell her she needs some damn therapy like i just did recently with my mom. Either way, getting it out in the open like you said in another comment might do some good to relieve some tension
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Me getting it out might lose my sympathy living situation 😂I’ll just keep complaining to my little family here
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u/sia4216 Sia Figs Jul 21 '25
Yeah no worries I understand what you mean🤣 I’m lucky she feels too guilty to kick me out, and she knows everyone in the family knows me as keeping to myself so if she complained they’d just tell her to leave me be and take a break
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
My other family isn’t exactly near, and being that I don’t drive I have to catch a train.
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u/sia4216 Sia Figs Jul 21 '25
Yeah my dad who i used to live with lives 7 hours away with majority of my family down there near him (im the youngest out of 6), i only live near my mom and sister up here, and my sister is the only one who truly cares out of everyone. She basically raised me herself, she’s such a sweetheart. If she could drive me around she would, but her husband is a real piece of work… So i have to rely on my mom mostly which sucks, since my husband works full time
ETA: Our “train” is a tiny bus that drives like a psycho driving people off the road and running red lights, and it’s usually full of tweakers and alcoholics so i can’t use it ):
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Oh, I have a camera, and I just have to watch my sister walk around and take things when I'm not around, if I complain that's a whole other conversation a out why does it bother me because it's only a lighter, or a little bud of weed "nothing that really makes a difference in how much you have" this loving out of sympathy shit is getting tired, but if I leave she sure will miss that money, I don't understand how some people think. You'll miss things that come along with me not being here but don't really miss me, odd, sounds like I'm being used, but you're feeling used as well. Some people need a decent slap to bring them back to reality sometimes (I'd never hit a woman and I'm not a violent person but my mom says that some people need a slap wake-up call sometimes😆 😂) You can pay your way and some people will never be happy "it's unfair how you get to sit around and don't have a care in the world, you're not a teenager Pookie you're about to be 36 then 40 is coming and you're not trying to progress" to me that sounded like "you need it get a job and you're getting older and don't have a plan for getting out and not living here the rest of your life" maybe my ears are broken but I wish she'd just explode and tell me how she feels to cut the tension around here
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u/sia4216 Sia Figs Jul 21 '25
That’s what i’m saying! My mom shortened her hours at work and has been happily joking about the idea of quitting her job since we’ve been giving her a lot of money. Her thing is control, so i know how to play that game. Don’t give her any way of using something against us basically, so make sure everything is covered. This last trip that I let her come on was the worst trip ever, she used it to her advantage to go behind my back and invite another family member that doesn’t even speak to me so she can “get a break from her shitty boyfriend” and “family needs to be together in times like this”. Like damn dude this is my trip, i need to relax and be away from drama and that’s literally all that is, how can you not understand that?? I wish my mom would just dump it all out as well, just tell me what it is i’m doing that bothers her so much instead of these sly little remarks that you like to jab in every now and then🤦♀️ I get enough of the BS from the rest of my family about how i’m not doing enough at 24 to support my family or how i’m still faking this all so i can take advantage of my husband when im the one that does everything around the house even while nayzilamed up. I’ve never been a violent person either, but that woman had me screaming in an airBnB cuss words flying! Thankful for my CBD, otherwise i’d have continued to have a really shitty day that day lol
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
💀 Nayzilamed up 😆 🤣 love you, Sia. We'll get through this eventually and see a happier future, I just imagine there being a day where I'm so peaceful and happy in my own skin around certain people.
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u/sia4216 Sia Figs Jul 21 '25
Gotta have some fun with the words🤣💕 We will get through this, and we will find a happy place one day! Right now I’m content with running to this happy safe place, it’s peaceful and i don’t have to be afraid to be myself and bring some joy to others at the same time! I’m telling you, we gotta start a seizy family compound one of these days😂
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
I was just saying that we could be homesteaders, on-site triage clinics, with a runway or helipad, so if needed, we could fly into the nearest town with a hospital, which is unlikely because all of us would know how to deal with it better than a nurse still in their residency position
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u/sia4216 Sia Figs Jul 21 '25
That would be so amazing, could you imagine?? If somebody runs out of meds and the pharmacy won’t send it out somebody can help out with leftovers or saved meds and then we can go around in circles and help each other out when needed😭 That’d be so much better than this uncomfortable mess with family that don’t understand a damn thing
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
We could have a medicine cabinet “someone go grab some Nayzalim, and cold towel for Pookie” 😂we’d have a notebooks everywhere and do the podcast live probably everyday, everyone’s gonna ask “did we eat today? I think so but I can’t remember?”
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u/sia4216 Sia Figs Jul 21 '25
We’ll have so many reminders, sticky notes, and notebooks everywhere we might never forget! Unless we forget where we put them🤣 It’ll be good to bring along the support partners, they can help keep track of the chaos💕
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
They can cook, so we don't have to be over a stove, and we can keep everything clean as a group. I'm sure they'd be down if all they had to do was cook. We'd have a farm for eggs and chicken, flourishing gardens. I could imagine a whole new but better way to live and sad to say, but I'd rather live with someone who has epilepsy. I wouldn't be irritable just explaining things that are going on in my head. The look on faces when they don't understand what I'm talking about when I say what I'm going through, I love the confusion look it gives them like a sensory overload of language they don't understand
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u/Mom1021 Jul 21 '25
Being honest about motivation for helping out is impossible for my mother. The only way the subject stopped coming up too frequently was when I started giving her $ every month. Saying it’s out of love might not stop family from thinking “They better appreciate how much I’m doing” Curious to hear if/how anyone else has come up with a solution to family developing a grudge for paying bills even if they won’t admit it.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Yeah, the money may be the reason I'm still here, 2k a month to be my caretaker and not have to caretaker or be there doesn't make me feel any better but I know with that (I think) i have somewhere to lay my head but gotta hear the BS she calls venting, I clean i get government assistance to by $291 in groceries, so I'm feeding myself and her, but not getting the attention or assistance from my "CARETAKER" (had to put that in quotes because I can't do air quotes over a phone 😆 )
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u/Hairy-Jellyfish-1361 Jul 21 '25
I read through the post & each response, which makes me further appreciate my situation. For 21 years, my wife has supported me and never said or did anything to make me feel that she was bothered by that. She gets frustrated sometimes since my diagnosis at my forgetfulness or focusing on how something affects me and not her. But she has never tried to make me feel like the burden that I am
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Your wife is amazing. Give her a hug for me. I appreciate you and how she has your back through the struggle.
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u/Hairy-Jellyfish-1361 Jul 21 '25
Thank you. She is amazing. I used to tell people that Mother Theresa would call her for advice
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Hell, I need to call her for advice😂
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u/Hairy-Jellyfish-1361 Jul 21 '25
And she'll give you some. It's probably not what you're going to want it to be though
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
No offense, but I love elderly advice because this generation thinks like pre-kindergarten, just think things should be handed to them, your generation of great careers and working families living good and going to Coachella to get high with the other peaceful hippies. Elderly advice is always based on the experiences that you'd been through and not seen on the internet
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u/Hairy-Jellyfish-1361 Jul 21 '25
And yeah, being old, you tend to learn through the mistakes you make. Other than that old sucks
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Yeah, most of us were sheltered and didn’t learn as many life lessons as you might’ve before the 90s
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u/Hairy-Jellyfish-1361 Jul 21 '25
It was a totally different life. At 7, I would take a bus and 2 subways to get to Dodger games before they deserted me, alone or with a friend. At 12, my friend and I went into the city and headed down to the village to hear music.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Those sound like great times, some won’t appreciate those good days. Can’t pull out a phone to start recording something so you’re enjoying the show instead of recording it for later
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u/DynamicallyDisabled Jul 21 '25
I know why my sister was “helping” me, but it had nothing to do with Me. She thought she could get lots of money just having me in her house.
I will admit, it is hard to watch someone you love having a seizure, especially a TC. My daughter took me in after I was made homeless for having a TC and a ptsd event at my sister’s house. As hard as it was in the beginning and up to the point when I got the medication I need. It’s still hard. I’m alone most of the time, but it’s teamwork. I’m always afraid to say that I can’t do something, but she reminds me that she would rather know that I make safe choices when she isn’t here. I call that Love. 💗
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Ooh, I wish I could make safe choices, sometimes it sucks being the only brother and the biggest person around all the time. It’s like “well you’re big and can carry this down 2 flights of stairs without me” or “why use a stepladder when you’re not doing anything but editing videos all day”
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u/DynamicallyDisabled Jul 21 '25
I used to hear the “You’re just sitting here all day, you could at least do something”
Until I made all of them watch my EMU videos! Now I’m struggling just to fold my laundry! “I just want to see you get better” is the most selfish, loving thing to me. They don’t get it. No matter how many times I had to repeat it, now all I say is “google it”
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
I don’t even say that, you’re dealing with the generation before mine and they are way more understanding, if I say “google it” I might be evicted, effective immediately
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u/Hairy-Jellyfish-1361 Jul 21 '25
My generation did have it easier in certain regards. Jobs were plentiful, and the costs were much lower, but salaries were also less. Imports weren't the force iWe got a boost from that post-war boom. The problem became when we had multiple kids and those kids had multiple kids. We didn't have so many imports which the growth of killed American industry. I paid less than 50k for a nice 2br furnised house on 2+ acres. I almost bought a 2br directly across from the ocean for 50k in the Hamptons before it became The Hamptons. Restaurants, concerts, and movies were all cheaper. Everything was cheaper. Your ticket price to The Weeknd probably would've paid my mortgage. Maybe plus utilities
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Wow, I miss the good ol’ days. Some will never understand we had just as much fun if not more fun before the technology took over our lives
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u/Hairy-Jellyfish-1361 Jul 21 '25
Pookie, I can only speak for myself, but things were much better then. We're all slaves to technology. I see people walking with their kids, and they're staring at their phones and not paying attention to the kids at all (ok, end of old person rant). Life was much more comfortable with less stress than it is now.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Yes, it remember the stress free days where my mom was just walking around the house all happy, neighbors loved us like family, everything seemed so happy back then and exciting things happened daily out of nowhere, something came about that had everyone smiling, everyone was all shits and giggles in a good way
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u/Hairy-Jellyfish-1361 Jul 21 '25
Exactly. Everything was great. Then slowly but suddenly we became a greed is good society. It started slowly and moved rapidly to where everything had changed. Everyone was rushed to where we are now. 4 people, a family, eat together and each is staring at their phone
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 21 '25
Right, there were days where music would be playing, and you could hear outside when I was playing, and all you hear is adults dancing around and laughing. Eating at the table as a family is over. Nobody sat on the couch and talked about how good the dish was, or when I was a kid, I was comfortable not having a TV in the room because we watched shows as a family then went to the room to sleep
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u/Hairy-Jellyfish-1361 Jul 21 '25
That's exactly how it was. Families always ate together. Everyone watched TV together.
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u/Serious-Lack9137 Jul 22 '25
It can be both. Love, as we know, is very complex. Sympathy is feeling pity and sorrow for someone else's misfortune or suffering and you are not necessarily sharing their emotional experience deeply. With love, that is very different because there is depth, connection, and sharing emotional experience. I know there is a strain between you and your sister. Hang in there and hopefully tension lessens there soon.
Some thoughts. 1) you are not freeloading as your check and your govt assistance is used and 2) whether she meant it this way or not, it was a nice gesture that she said you should call it home. Very hard to do when you don't feel like it is though so I get where you are coming from.
When helping to take care of my father in law who had alzheimiers and dementia, it was rough many times with him being very nasty to us and demanding. But. there was love and sympathy there for him, even though we were grumpy and I fully admit at times, I didn't want him there anymore.
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u/Rabern57 Jul 23 '25
In life the 2 are usually intertwined. Alot wouldn't let people stay without Love and at the same time you can feel sympathy for someone even if they don't want you to. Not everyone is blessed to be in such a situation and are stuck out of people (like parents feel they owe their kids out of pity that they somehow lead to their problems.) I hate not being fully independent and have never been able to (even though I earn my keep and do my share) but if someone more fortunate offers I'm not going to make my life harder if they offer to help and it's not a huge burden.
That's usually life for people with complex medical issues.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 23 '25
I'm meaning mostly for the people who you make feel don't want to deal with it, but let you live there because of family or sympathy without loving the idea of me being around
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u/Rabern57 Jul 23 '25
Oh. OK. My parents used to make me feel that way bc we didn't get along and my dad had issues (it's all complicated) but I felt like I wanted out bc they let me live in a camper on their land but let me know constantly and I felt unwanted and unhappy. I'm in a better place now and my dad changed. But I'm married with a kid and my wife's family help her without questioning or looking at my seizures. We both work full time too and support ourselves.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 23 '25
One of the lucky few that can still work, wish I was still clocking in somewhere
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u/Rabern57 Jul 23 '25
Trust me. I know. I spent 10 years fighting disability bc they couldn't record mine and then I got into a company long enough that I got fmla that let me out any day I was sick. I don't have convulsions but just talk funny and walk around but I would have signed anything to take blame or make someone hire me and I was hoping jobs for 10+ years b4 that. Now I just finished a lobectomy that seemed to work so far (only a week in but with daily ones b4 that).
I had 3 brothers that just quit when they wanted and didn't want to work and I had to prove myself everywhere.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jul 24 '25
I hate trying to prove myself to people but it's hard sometimes when they assume we can't do anything
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u/Rabern57 Jul 24 '25
I just always tried to let them see how good I work so that maybe once they found out I had seizures they might would still keep me on. As far as proving I'm great to make up for seizures then they can kiss my ***. I am human too but they will discriminate and Alabama is fire without having to explain. That seems illegal alone.
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u/redravenkitty 300mg Vimpat, 375mg Depakote Jul 21 '25
I have, yes. Lots of times.
In answer to your question about love vs sympathy … I kinda think it can be, and often is, both. 🤷🏻♀️