I need some support guys :(

[Janellie8]

Hello my dear friends.
I just had this HUGE seizure- gosh I hate that word, seizure. And I feel like crapp. I thought I was done asking myself this question years ago, "why me?" Well, I don't know why okay!! I have so much anger towards my epilepsy. I feel like it's ruining my life. I thought I was done with those questions, I thought I accepted this already. But clearly I haven't I just need some reassurance that I'm not the only one. Because that's how I feel. I feel like an outcast, underdog, a loser. Why can't I just be normal? Why does this terrible thing have to exist?! I keep replaying the noise that comes from my mouth when I have a seizure. I can't get that awful sound out of my head! I need counseling. Or meditation. Or something! I hate life right now. I've never hated anything so much in my life. Sorry for being so angry I want to learn how to accept this. To understand that this is part of me...

Oh! And here is Some good news:
The coping with epilepsy is doing this "Hidden truths: a mind unravled" art show in California and guess what, my art got accepted into the show! It makes me happy!

Have a wonderful day/night!
Janellie

 

[Tez_20]

Hello Janellie,
I've had seizures for many years and up till I was 31yrs old all my thoughts was the same as yourself and I was letting them control my life completely. Stopped myself going out doors through them because as soon as I'd have one I'd be down again with another and for some reason one day I said to myself NO WAY are seizures going to keep controlling my life, as I've been in coma's walked in the road in autisums in general had them bad to the extent over 18 daily and by saying that I've got on with my life and never looked back and I look on them now if I have one, if I come around I do if not that's it because I've had a lot more happen to me since healthwise and coping with that alone drives me soft.

Congratulations also concerning your Art work.

((A large to you my friend)) Terry

 

[SlimBlue]

You're not the only one

I think most of us still have a 'why me?' moment now and then, there's nothing wrong with that at all, and at least here you can have a good rant amongst friends who really really do understand- that on it's own means such a lot

It's a hard condition to live with, and many of us never get an explanation. You'll drive yourself crazy looking for answers though. I was very bitter for years, but these days I just try to focus on what's good in my life- I concentrate on what brings me joy and makes me feel worthy to still be alive.

You have your art, which is a great gift to be cherished. Focus the energy of your despair and hate into that, make the E work for you- don't let it be your master.

It's great about the art show. See? Even feeling so down, you can still feel happy

 

[Cint]

Hi Janellie,

Im sorry you're having to deal with seizures. As SlimBlue said, most of us have had those "why me" moments at one time or another. Epilepsy is a very difficult condition to live with and even more difficult for those on the outside to understand. Like you said, find some counselor. Depression often does accompany epilepsy, so sometimes it is difficult to focus on life in general when this monster overtakes your life. Speak with your neurologist. Ask him/her for referral to a therapist. Or call your local Epilepsy Foundation.

Congrats on having your artwork accepted! Keep focused on the good in your life.

 

[arnie]

Hi Janellie. There isn't a whole lot I can say that others haven't said, but I want you to know that I'm sending support your way, thinking of you, and am quite certain that you will get past this rough patch intact and with the added skills and strength to help you through other rough patches which will crop up from time to time. I know you can do it!
Also, I agree that a good counselor can be very important and can help you a lot with depression, anger, coping skills and such.

As for your art, that's great! I'm really happy for you. Can you post a pic of it here or give us a link to it?

We are here for you!

Carry on!

 

[clusterhead]

Hi Janellie,
maybe I am in no position to offer advice because I feel as angry as you sometimes – or maybe I can write a word or two exactly because of that. I won’t talk so much about the seizures themselves as mine are kind of rare so I can only imagine what you are going through.

But feeling “an outcast, an underdog, a loser” I am sure is something that we all have to deal with in our personal, professional and social lives: the fear to go out, make new relationships, lack of independency, thinking there are limited career choices. Well, living with epilepsy for the last 18 years, I have come to realize a couple of amazing things:

- It’s a myth that epilepsy drives away people in general. It drives away superficial and stupid people. That turned great for me. No way would I want to be around these people anyway, thinking I could count on them only to realize it’s all fake when something would eventually go wrong (you know, epilepsy is not the only thing that can go wrong in someone’s life).

- Depending on others was one of the hardest parts for me. I grew up to believe I should be completely self-sufficient. That’s bull@. People need each other anyway in so many ways, not only for health issues. That doesn’t make us needy or less autonomous. It makes us a community rather than selfish individuals. I mean taking care of each other should be the ‘normal’ and not something to be embarrassed about. I think it’s sad that people nowadays are pretending “they’re fine” all the time and are so afraid to reveal their weaknesses even to their closest friends. They try so much to look ‘normal’ and end up depressed and unable to share. I believe mutuality is the key. I may have had my friends and (most of) my family doing a lot for me, but they also know I am always there for them, when I can. They say I have made them stronger and taught them to fight. It means a lot. I had this image of myself always being the vulnerable one, but it turns out I have become a pretty good fighter and that is an inspiration for people who can appreciate it.

- I don’t want to be misunderstood in this one: I am in favour of people with epilepsy working and not giving up their career dreams. But I also believe in accepting who we are and adjusting. For me it was not a compromise. I already didn’t appreciate the way people are so much building their identities in relation to their career and sacrificing many aspects of their personality to fit in boring jobs in boring offices with boring bosses (no offence). I became a freelancer and now I work from home and I can adjust the hours and the amount of work. My second job was tutoring children. That was very very difficult for me to give up, but back then I couldn’t bring myself to talk to the kids’ parents about my epilepsy or risk having a seizure in front of them. I studied hard, gained new skills and now I tutor children with epilepsy and learning disabilities. It’s one of the most fulfilling things I do. Details aside, being forced to not take things for granted made me re-evaluate and make more profound and meaningful choices. And you being an artist sounds so great, I am happy for you. I wish I had such a talent.

- I also had to force myself to go out and leave the safety of my apartment. I took small steps in the beginning, making sure I would be among friends. Then I realized it was mainly because of a very bad experience: I had a seizure in the street, I was alone, and a stupid passer-by had the brilliant idea to call the police instead of an ambulance to arrest me as a drug user! Ok, that was awful but I refuse to give up walking on the street because idiots exist. That would be a reason for everyone to hide and only idiots would walk around.

I will stop here. I just want to say I agree with others who said that a counselor is a good idea. Nobody should have to go through something like that without being able to confess their emotions and fears. I also believe that fighting back what pushes us down is the best: becoming an active member of a community, educating others, exposing what is wrong and creating alternatives. That’s how I redirect my anger towards what’s really wrong and hypocritical in our society and not turn it against myself. Then again, it might just be me who always criticized the ‘normal’ as something too tight and claustrophobic for most people to fit in.

[Excuse me for how I express myself in English, I am really trying here!]

 

[Emee]

I have had only partial seizures (so far) but I have so much respect for the people on this forum. Everyone here seems to be so strong & confident that I seem to get strength by just reading the post. I identify with you because I do have neurological problems which cause me to pass out, can't drive & no energy to leave home, no joy in life. Even after a partial seizure I feel real bad for a long time.

I do understand why you have anger & why you would ask "why me". You see other people living a seemingly wonderful life with no problems & can't help but be a little envious. Maybe you can find a good counselor. Trouble is, I don't know anyone that really understands what you go through unless they've been there. My neighbor asked me how I felt when I had a partial seizure. I felt so pleased someone would ask & try to understand what I experienced. I tried to explain to her about the de-ja vu feeling I get at onset of seizure and she thought I was communicating with the dead. LOL! I knew right away she was not someone I should be talking to.
I hope you feel JOY in your life again soon.

 

[MIKEJ]

Like you I thought I had accepted this horrible problem. I was diagnosed in 2000 and continued on for years. Then about 3 years ago I started having seizures and then 18 months ago I had a set that left me unconscious for 5 days and when I came around I had forgotten about 14 years of my life, virtually the entire lives of my children 13 and 15. I have had a number of seizures since then and finally realized that I haven't accepted this at all. I hate the meds the anger and depression.

So you are not alone and wish I could make you feel better. I understand what your going through and people do care even if it seems hard to find them. Try to find the possitives in your life and think about them as much as possible. If you need to msg me. I feel the same way and just knowing there are other people in the same boat adds comfort.

It is almost immposible to find anyone who understands and when you try to explain they have no clue or don't want to talk about it.

Its ok to be angry and vent and people here will listen and try to help.

 

[Janellie8]

Hello Janellie,
I've had seizures for many years and up till I was 31yrs old all my thoughts was the same as yourself and I was letting them control my life completely. Stopped myself going out doors through them because as soon as I'd have one I'd be down again with another and for some reason one day I said to myself NO WAY are seizures going to keep controlling my life, as I've been in coma's walked in the road in autisums in general had them bad to the extent over 18 daily and by saying that I've got on with my life and never looked back and I look on them now if I have one, if I come around I do if not that's it because I've had a lot more happen to me since healthwise and coping with that alone drives me soft.

Congratulations also concerning your Art work.

((A large to you my friend)) Terry

You've really been through a lot it's hard to not let epilepsy control my life. It's hard. But I'm Gnna try and be as strong as you are. And let my epilepsy know that there is no way it is going to bring me down or make me stay inside and hidden.

Also, thank you! Have a wonderful day!

Hugs,
Janellie

 

[Janellie8]

Clusterhead,

You have given me so much advice I don't know where to start! So I will thank you first it means a lot that this community is willing to shares their stories and advice. When you said that you had a seizure on the street, don't u feel uneasy when u pass there? Because wherever I have had a seizure I try and avoid that area, it just brings back bad memories. I don't know how to get over that. I live in a small dorm here at college and I have had plenty seizures in there, and I want to feel comfortable again in there I don't know how to. I don't hide as much as I used to though. But it seems like it's hard going back to my room because of what happened in there. Ice recently been more open about my seizures with my friends- I was tired of hiding my feelings and playing the normal card. It was just bundling up and I'm glad I reached out to them. Thanks again! And Thanks for making me feel better

Hugs,
Janellie

 

[Janellie8]

hope you feel JOY in your life again soon.

Emee,

Thank you so much. Joy is important isn't it?! And I do sometimes feel envious that people are just living their lives and not having to deal with something like this. But I have to get over that and try to make the best of things. I can agree with you when u say that reading these posts make you feel good and that people have so much strength on this site. That's what I love about it! But what would be even more awesome is going to like a group counseling kinda thing but with those who have epilepsy! That'd be amazing.

Have you or anyone ever been to a group counseling/therapy with others that have epilepsy?

Thanks for your lovely comment,
Janellie

 

[Janellie8]

Like you I thought I had accepted this horrible problem. I was diagnosed in 2000 and continued on for years. Then about 3 years ago I started having seizures and then 18 months ago I had a set that left me unconscious for 5 days and when I came around I had forgotten about 14 years of my life, virtually the entire lives of my children 13 and 15. I have had a number of seizures since then and finally realized that I haven't accepted this at all. I hate the meds the anger and depression.

So you are not alone and wish I could make you feel better. I understand what your going through and people do care even if it seems hard to find them. Try to find the possitives in your life and think about them as much as possible. If you need to msg me. I feel the same way and just knowing there are other people in the same boat adds comfort.

It is almost immposible to find anyone who understands and when you try to explain they have no clue or don't want to talk about it.

Its ok to be angry and vent and people here will listen and try to help.

As you said, just knowing that there are others in the same boat adds comfort, so you have made me feel better 14 years of ur life! Must have been so tough and frustrating. Did u ever regain back some of ur memory?

Hugs,
Janellie

 

[clusterhead]

Clusterhead,

When you said that you had a seizure on the street, don't u feel uneasy when u pass there? Because wherever I have had a seizure I try and avoid that area, it just brings back bad memories. I don't know how to get over that. I live in a small dorm here at college and I have had plenty seizures in there, and I want to feel comfortable again in there I don't know how to. I don't hide as much as I used to though. But it seems like it's hard going back to my room because of what happened in there.

Of course, for a very long time I didn’t want to see that place ever again. But truly I think it was because I was mistreated afterwards by that idiot and the others who did nothing to stop him when he called the cops to arrest me because he thought I was a junkie (even if I were, what he did was disgusting and any kind of discrimination against any helpless person with medical issues is unacceptable). To tell you the truth, I still can’t pass by the place where I was attacked and beaten – that attack and the injuries I suffered caused my epilepsy.

However, I don’t feel the same way for seizures that are not connected with bad memories other than the seizure itself. Yes, for the first couple of weeks it's uneasy if I have to visit the place again, but after a while it’s ok. So I guess for me it’s the fear of facing hostility when being helpless and not so much anything else.

But it’s not the same for everyone. People have different ways to cope. I believe that there should be a balance between not giving up our lives on the one hand, and on the other not feeling obliged to do things we are not comfortable with, we don’t feel ready to or make us feel unsafe, just to prove “we can do everything no matter the epilepsy”. In short, fighting and adjusting go hand in hand. And moments of depression or anger may be a normal, small part of it if it doesn’t consume us.

Transatlantic hugs!

 

[joey]

I became hopeless and joi a gang that would"love and protect me" they did but it was because I was angry and trying to cope. Now I can't even remember those days. SMH

 

[Tez_20]

You've really been through a lot it's hard to not let epilepsy control my life. It's hard. But I'm Gnna try and be as strong as you are. And let my epilepsy know that there is no way it is going to bring me down or make me stay inside and hidden.

Also, thank you! Have a wonderful day!

Hugs,
Janellie

Hi Janellie,

Yes I've been through a fare bit but just the same as anyone else but it comes to we all differently....if you can rise above not letting seizures control your life you won't half feel the difference mentally wise, I do know i'm not so stressed concerning them instead it's my overlapping autoimmune diseases now causing loads of problems and pain.

Oh well life goes on

:hugs: from me also