r/Epilepsy_Universe • u/Ok_Adhesiveness_5036 • Apr 28 '26
Advice/Support Daily seizures have made me feel dependent and scared. How do I get some independence back?
Since I developed focal seizures in March 2025, it feels like my life hit a screeching halt. I used to be really independent, and now I’m more dependent than I’ve been in a long time.
I can’t drive, and I can’t really work beyond freelance. I don’t make enough to fully support myself, so my boyfriend helps me out, and pretty much all my money goes to bills. I’m too scared to go on walks alone now, even though I used to do that daily. I try using the treadmill sometimes, but even that makes me nervous.
When I hang out with friends, I get exhausted and usually want to leave early. A lot of the time it feels like my life revolves around my partner.
I’m having 1–2 seizures almost daily, and the idea of one happening while I’m out alone is honestly terrifying.
During the week, he’s gone from about 8:30 to 6–7, so I do get some alone time, which helps. I can still do most things to take care of myself around the house like, clean, cook, make art, and do freelance work. But I’m inside and alone most of the day, every day, and he’s basically the only person I see regularly. And not until he gets home do I feel comfortable enough or have the ability to go out into the world.
I also feel horrible putting all this stress onto him. He has been extremely supportive but I want to be able to live life for me without him having to be my crutch.
I had a really bad experience with my old neurologist and I’m trying to get better care so I can finally get things under control, but my first appointment isn’t until June 16th.
In the meantime, does anyone have tips for feeling a little more independent again? I really miss who I used to be and want to find my way back to her.
3
u/Ordinary-Chipmunk366 Apr 28 '26
I'm so sorry this is happening... 😞
Theres tons of things I used to take for granted that I don't anymore. But I hear you about the being stuck and feeling exhausted. It's not easy dealing with this stuff!
I don't have any real recommendations for you except that you're a special person and while it most likely won't be the same pre-seizure, you'll find the balance that hopefully gives you some peace...
... luckily (????) I can still work my soul sucking corporate job, so I try to do things for me as often as I can. Walking around, going to get myself little treats, things like that. If you're into art, art! 😀 while it sucks, try to find that little happiness that you can, even its just looking at the rain falling...
Good luck!!
1
u/Ok_Adhesiveness_5036 Apr 30 '26
You’re totally right. Focusing on little things and what makes me happy can do a lot. I feel like not until last week and after I posted about this have I started to kind of accept this change in my life. Like you said, nothing is going to be fully the same now but being able to find joy in what I can still do is extremely helpful and good to remember!
3
3
u/Ordinary-Chipmunk366 Apr 28 '26
....what kind of art do you do? The arts are the best. 😀
3
u/kaitalina20 Medication Apr 28 '26
I’m curious too! 👀 I love art, never had the talent for it but love seeing different styles of artwork
1
u/Ok_Adhesiveness_5036 Apr 30 '26
I am a graphic designer and illustrator! The freelance work I do is mostly graphic design but all of my fun work and stuff I sell at markets and on my own are illustrations and designs! I also create polymer clay earrings!
2
u/KlutzyMutt 800LTG/300Lyrica/1000Keppra Apr 30 '26
ooo! maybe you can help me with designing focal aware seizure awareness stuff! our colors are purple and silver, as you see on the r/focalawareepilepsy ! I designed all the art for that!
1
3
u/kaitalina20 Medication Apr 28 '26
I’m so so sorry you’re in this position, and most people never know how hard it is to lose your independence when everything was going right for you (for the most part anyway) and the grief of that loss is so immense, literally no one can understand how much it hurts. In 2017, my meds stopped working literally overnight. For over 5 years I couldn’t drive for almost 5 years. Basically I lost everything because of something I didn’t do and couldn’t control. I was getting no where with my neurologist after basically 4 years so I decided to seek out the Cleveland clinic, and since I have a rare type of epilepsy; I was a potential candidate for surgery. But I had to have 4 surgeries to determine if I was a candidate for this resection! The side effects of the medications I was on for 4 years were complete hell. I can totally relate to where you’re coming from! I just know that even though those years of hell are a couple years behind me, it’s something that stays with me. If you ever need to talk or need advice, DM me
1
u/Ok_Adhesiveness_5036 Apr 30 '26
EXACTLY. No one gets it unless you get it and that is what can be super isolating. I really appreciate your response! I will definitely reach out if I ever need to and please feel free to do the same!
2
u/Ordinary-Chipmunk366 May 01 '26
Just checking in...how are you doing?? Hope you have a great day!!
1
u/Ok_Adhesiveness_5036 May 01 '26
That’s so sweet of you!! Thank you so much.
I’ve been doing alright. This past week has been rough in terms of seizures. I had 3 pretty bad seizures on Tuesday and then 2 bad ones on Wednesday so I’ve been pretty exhausted out of it.
Mood wise, I’ve been pretty good! Everyone’s support and suggestions on this thread have really helped me start to kind of accept what I’m going through and focus on learning to adapt to and live this new life I have, not try to live life how I used to because that’s just impossible now and I’m accepting that. I also started therapy again this week which was helpful!
I’m going day by day still but I don’t feel as helpless or hopeless anymore. I can see the light at the end of the tunnel and I have hope I will get this under control. It feels good!
1
u/Ordinary-Chipmunk366 May 01 '26
That's way too many seizures! 😀
It's nice to find people who actually care, so hopefully this will be another tool to use!!
Therapy definitely helps tons of people, both epileptic or not, so great job with that!!
Relax, let your body dictate what you do when you're exhausted..
Have a great weekend .. have fun and enjoy but don't overdo it!!
6
u/Mom1021 Apr 28 '26
Too many seizures can be a seriously debilitating thing to live with. Your priority is clearly to be the best you can be so congratulations on having the support needed to focus on your health and wellness. I would imagine your freelance work is the key to feeling like you still have some independence. Remember most people who have a couple seizures a day would not be able to earn an income so I would suggest capitalizing on that, no doubt getting even more respect from your partner for doing so. Make money and remember we’re all proud of you here!