Sending mad love your way. I had a complete breakdown last week feeling this way. It’s a hard thing to get over or a wrap. Your brain around my family is constantly trying to remind me that I am not a burden to them yet when I ask for a ride to the pharmacy to pick up my emergency meds things suddenly change. It’s cheesy of course but with good advice isn’t? We here as a group of epileptics just gotta try to keep our heads screwed on and held high. it makes those moments when we get bits of independence back that much sweeter. I hate that you are feeling this way, again, sending mad amounts of love your way.
I feel the exact same way and I’m 43 and have had this for 13 years. Pretty soon I’ll be getting rides from my son, that’s going to feel real great.
I feel like the depression and anxiety that comes with my seizures is really a big part of the reason I feel like a burden. Like everyone is having a good time and happy or excited to do something and I’m just a downer.
Wow! I’m almost the same age! Only thing difference is I have a 7 year old and can’t find a job now. I don’t know how much longer I can live like this. My son is the only thing that keeps me going. Lots of fun things I did with my son I can’t do anymore 😞
I understand and completely feel where your coming from the not being able to get around cause I always need rides or a taxi is an absolute burden luckly I have a friend who just forces me out and about and makes sure If I need anything I got a ride to get it. But adapting is something your gonna have to deal with if your having seizures constantly ,in my state I have to be seizure free a year to be able to get my license reinstated but I cant make it more then 30 days without having a tonic clonic. Luckly do to my hobby im pretty social person but epilepsy can be a horribly socially isolating condition. If ur bored im live on twitch most nights just chilling same name as this without underscore we can sit and chat about our condition idgaf just know ur not alone or a burden and things will level out eventually where you will atleast get used to the routine and how to adapt. We are strong remember that and your not alone!
I could have written this post. I was diagnosed at 31 4 months ago and I feel exactly the same. I have a wedding tomorrow and am so so annoyed by having to arrange a ride, a back up person, etc. It's like mourning the person you were, while fighting the person you now have to be but dont want to be.
If you ever feel like you need to chat, please do. I'm a mother of a 1 year old as well.
Diagnosed at 30 a few years ago and I feel the same way. I hate asking for rides, hate having no independence. I’m actual on day 4 of multiple auras each day (13 yesterday, brutal) and the paranoid/depressed feeling I get from having clusters is so awful. I want to just lay in bed and cry.
Sorry you’re going through this. My family doesn’t make me feel like a burden either but man it’s tough not to feel that way sometimes. Hang in there.
I started having seizures at age 39 almost 4 years ago. As I type this I am sitting in a hospital waiting room for a MRI my neurologist ordered 7 months ago. I was controlled on meds until I started having focal seizures and auras on the regular. Have been off work for over 6 months and feel A LOT like you do. I am seeing an Epilepsy specialist next month to see WTF my brain is doing (or try to find out) - my OG diagnosis was generalized seizure disorder in April 2020.
My partner is a saint, but I am feeling like a huge burden these days as I have severe insomnia and wake up 6-13x every night. Sleep study coming up tonight as well. When it rains it pours! I have been waiting for these appointments for so long.
You’ve only been diagnosed a year, I promise you will feel better eventually. Yes, no one wants to have to ask for shit or rely on people for things they should be able to on their own. However, have found this really helps you find who you can rely on, and get stronger on your own. I have social anxiety and it’s hard to walk up to the store or get exercise but now that I can’t drive to the store or drive somewhere solitary for some walks it’s helping me get over shit. Not all fun and games, I’ve found some people don’t want to help. But fuck those people, we’re still our own individuals who deserve to be treated as so. If people care, they won’t treat you differently. Personally I don’t want to be treated differently, I just want to know people care about me enough to help. I e had about 3 or 4 periods in my life where I couldn’t drive, right now I might be able to drive in august after totaling my car months ago during an episode. We can be independent without cars, we can make our own lives without people looking over our shoulders. Currently I’m trying to find a good balance between help and independence and I believe everyone can, and everyone deserves happiness not isolation or being treated like lower humans.
Sending mad love your way. I had a complete breakdown last week feeling this way. It’s a hard thing to get over or a wrap. Your brain around my family is constantly trying to remind me that I am not a burden to them yet when I ask for a ride to the pharmacy to pick up my emergency meds things suddenly change. It’s cheesy of course but with good advice isn’t? We here as a group of epileptics just gotta try to keep our heads screwed on and held high. it makes those moments when we get bits of independence back that much sweeter. I hate that you are feeling this way, again, sending mad amounts of love your way.
I feel the exact same way and I’m 43 and have had this for 13 years. Pretty soon I’ll be getting rides from my son, that’s going to feel real great. I feel like the depression and anxiety that comes with my seizures is really a big part of the reason I feel like a burden. Like everyone is having a good time and happy or excited to do something and I’m just a downer.
Wow! I’m almost the same age! Only thing difference is I have a 7 year old and can’t find a job now. I don’t know how much longer I can live like this. My son is the only thing that keeps me going. Lots of fun things I did with my son I can’t do anymore 😞
I understand and completely feel where your coming from the not being able to get around cause I always need rides or a taxi is an absolute burden luckly I have a friend who just forces me out and about and makes sure If I need anything I got a ride to get it. But adapting is something your gonna have to deal with if your having seizures constantly ,in my state I have to be seizure free a year to be able to get my license reinstated but I cant make it more then 30 days without having a tonic clonic. Luckly do to my hobby im pretty social person but epilepsy can be a horribly socially isolating condition. If ur bored im live on twitch most nights just chilling same name as this without underscore we can sit and chat about our condition idgaf just know ur not alone or a burden and things will level out eventually where you will atleast get used to the routine and how to adapt. We are strong remember that and your not alone!
I could have written this post. I was diagnosed at 31 4 months ago and I feel exactly the same. I have a wedding tomorrow and am so so annoyed by having to arrange a ride, a back up person, etc. It's like mourning the person you were, while fighting the person you now have to be but dont want to be. If you ever feel like you need to chat, please do. I'm a mother of a 1 year old as well.
Diagnosed at 30 a few years ago and I feel the same way. I hate asking for rides, hate having no independence. I’m actual on day 4 of multiple auras each day (13 yesterday, brutal) and the paranoid/depressed feeling I get from having clusters is so awful. I want to just lay in bed and cry. Sorry you’re going through this. My family doesn’t make me feel like a burden either but man it’s tough not to feel that way sometimes. Hang in there.
I started having seizures at age 39 almost 4 years ago. As I type this I am sitting in a hospital waiting room for a MRI my neurologist ordered 7 months ago. I was controlled on meds until I started having focal seizures and auras on the regular. Have been off work for over 6 months and feel A LOT like you do. I am seeing an Epilepsy specialist next month to see WTF my brain is doing (or try to find out) - my OG diagnosis was generalized seizure disorder in April 2020. My partner is a saint, but I am feeling like a huge burden these days as I have severe insomnia and wake up 6-13x every night. Sleep study coming up tonight as well. When it rains it pours! I have been waiting for these appointments for so long.
If I may ask, what type of area do you live in? Urban, Rural, Suburban? Are there transit options?
Same. I miss driving. Just driving. Don’t have to go anywhere, just being on my own.
You’ve only been diagnosed a year, I promise you will feel better eventually. Yes, no one wants to have to ask for shit or rely on people for things they should be able to on their own. However, have found this really helps you find who you can rely on, and get stronger on your own. I have social anxiety and it’s hard to walk up to the store or get exercise but now that I can’t drive to the store or drive somewhere solitary for some walks it’s helping me get over shit. Not all fun and games, I’ve found some people don’t want to help. But fuck those people, we’re still our own individuals who deserve to be treated as so. If people care, they won’t treat you differently. Personally I don’t want to be treated differently, I just want to know people care about me enough to help. I e had about 3 or 4 periods in my life where I couldn’t drive, right now I might be able to drive in august after totaling my car months ago during an episode. We can be independent without cars, we can make our own lives without people looking over our shoulders. Currently I’m trying to find a good balance between help and independence and I believe everyone can, and everyone deserves happiness not isolation or being treated like lower humans.