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Old 09-05-2007, 09:22 AM   #1
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bevin 30 HB User
Angry feeling angry just to have a seizure disorder

From bevin is it common for any one with a seizuredisorder to be just plain angry that that they have a seizure disorder and has to take medicine for it. Somtimes I think i am angry about my seizuredisorder because i am dealing with anger as a sideeffect of the depakote i take to control my seizuredisorder. So add those two things together i know i have been a very angry and have been a self loathing person inorder to feel in control again. being that way has not helped me it has harmed me and made me take chances I know know that i should not have ever in my life taken. I need to be given advice from anyone on how to love myself again and get rid of this anger i have toward myself when it comes to having a seizuredisorder. how do I deal with that anger in a productive manner so this does not destroy me or my life or my family relationships. how do I take back control after feeling so bad about myself for so very long.

 
Old 09-05-2007, 11:23 AM   #2
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Re: feeling angry just to have a seizure disorder

First of all, the seizure disorder does not define you as a person- you are not your disorder.

Yes- it's quite normal to be angry at the loss of functioning you used to have, and to have limitations- yet they don't take away all of your life- you still have a lot left that you can do. You just have to do it differently. Were you going to go sky diving, or b.a.s.e. jumping anytime soon anyway? Anger is a part of the grief of loss of what you used to see as 'normal'... you have to readjust your view of 'normal'. It takes time, but it is possible to have a life with seizures.

I'm 43 years old, and have been diagnosed since 1986. I have complex partial seizures, and sleep like a dead person afterwards, wake up feeling like I've been hit by a truck and have a lousy headache. It sucks. But it's not my entire life. I have about 5-8 a month, and am on disability, which has been the pits to get used to. I miss work, and feeling productive. I miss my coworkers. But I was getting sent out by ambulance too many times because of the seizures. I lost my job, work identity, total income (I get a portion through Social Security and my long term disability insurance), the health I needed to move back to the state I used to live in where I was healthier, I'm isolated (all friends in other state, and no co-workers have called- I tried for a while, then gave up)....it's hard. But I have to deal with it, and continue to make plans for the future.

I'm seeing a new neurologist (due to now being on Medicare, and having the options I didn't have on Medicaid), and getting some new evaluations and medications. There is some hope with this. It's taken 3 1/2 years to get to this point, but hopefully, things will turn around.

It's ok to be angry- but remember that seizures do not define who you are- you are a lot more than one diagnosis.

 
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Old 09-05-2007, 11:55 AM   #3
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nerfmom HB User
Re: feeling angry just to have a seizure disorder

I think that having seizures makes a person feel as if they have no control of their lives. It was hard for my husband to have to stop driving because of his seizures. After all, he had been driving for many years and drove for a senior/disabled bus company as well as driving a mail truck in his younger days.
So, it is alright to feel angry because of control issues, but don't let your seizure disorder ruin your life. No matter how hard it is, think in a positive manner. There are many things in life that are a challenge, but look at the things that you are still able to do with your life. Much love to you.

 
Old 09-06-2007, 11:07 AM   #4
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: feeling angry just to have a seizure disorder

I guess I was at an advantage being my seizures started when I was a child. They did hinder me from participating in "at risk" sports and events back then. That did make me upset.

Best advice I have is what we do in a lot of challanges. Face it head on. Confront your issues, and sort out the problems. Why is having seizures such a debacle for you? Is it the same as the color of your eyes? Try to see it as something you cannot change, and thus the anger is a worthless cause to fight.

Relationships (with potential other mates) are something I cannot comment on. I've put that on a long term holding pattern due to past bad experiences. As well as a secondary reasoning. I have a inherited condition other than epilepsy that in all honesty I would not want to pass on to any offspring. I would not want what I went through in surgeries and in growing up (torment) to have them have to endour.

I had a string of years (over 6) going from med to med trying to find what would work to control my seizures with little luck. But I kept on. They found something that worked a couple of years later. I learned to take the bitter with the better.

You need to find a "close knit" group of friends you can call on. Thats how I managed to survive. I don't have many, but I have a handfull that are closer than most relatives are.

--Travis

 
Old 09-06-2007, 01:30 PM   #5
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bevin 30 HB User
Re: feeling angry just to have a seizure disorder

thankyou travis, nerfmom and neurowreck for saying that the anger i feel is normal but that I need to face that anger head on and go on with mylife and readjust my definition of normal and accept that I have this diagnosis. I amsurprised at myself because my medicine makes me angry. I know now that is a side effect that i need to acknowledge and deal with head on. as you all say i need to define myself in other positive ways than thinking my seizure disorder defines me as a person because that is not the truth and you are all correct in saying that i have to consider the things i am still able to do. to answer your question travis about my non specific seizure disorder being such a debacle for me is because i was surprised at myself and how my anger was so strong and my despair was so strong over my seizure diagnosis which has occurred now several years ago when i was 21 and now I am thirty years old. I had no idea that dating with my disorder could be as difficult to deal with and that feeling of difficulty made me want to just give into a need to feel like a normal woman with out the seizure disorder who could do anything she felt like when it came to dating with a normal feeling of wanting to be in a relationship with some one any one but i think now i was way to desperate to be in a relationship and need to redefine my understanding of dating and being in love and deal with the fact that i have to be extra careful now because of the seizure disorder and think before I accept going out on any dates period and think of what the intentions will be before going out on the date or not go out on the date if my instincts tell me otherwise. thankyou all for telling me it is okay feel anger and that I am not my disorder that I am my own person who is still a valuable person in my own right and to believe that about myself eventhough it at times can be hard to believe in myself. thankyou all for your kind and caring words of encouragement.You all gave me a lot to think about like not dwelling on the negative to focus on the positives and only positive things in my life. bevin

 
Old 09-06-2007, 05:12 PM   #6
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nerfmom HB User
Re: feeling angry just to have a seizure disorder

It is hard to have a social life with any chronic illness, especially these days. As you get older things change and so do relationships.
Don't let your seizure disorder interfer with your social life. Go out with friends who you know and trust and who know you. Relax and have fun and maybe you will be surprised at how much fun you can have. You will know when you meet that special person and I would bet that when you do, whoever they are, it won't make any difference that you have a seizure disorder. Real love is not conditional! It means that you are accepted for yourself, no matter what. Much love to you.

 
Old 09-06-2007, 05:54 PM   #7
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bevin 30 HB User
Wink Re: feeling angry just to have a seizure disorder

thankyou nerfmom i know you are right about me being accepted for who I am and that my seizure disorder will not matter to that special someone. So I will go out with my friends and try to make new friends as best I can. I will relax from now on and have fun. thank you for all the loving encouraging talk .I really needed it. much love to you too. bevin


Quote:
Originally Posted by nerfmom View Post
It is hard to have a social life with any chronic illness, especially these days. As you get older things change and so do relationships.
Don't let your seizure disorder interfer with your social life. Go out with friends who you know and trust and who know you. Relax and have fun and maybe you will be surprised at how much fun you can have. You will know when you meet that special person and I would bet that when you do, whoever they are, it won't make any difference that you have a seizure disorder. Real love is not conditional! It means that you are accepted for yourself, no matter what. Much love to you.

 
Old 09-08-2007, 04:02 PM   #8
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neurowreck HB User
Re: feeling angry just to have a seizure disorder

If someone doesn't accept you because of a seizure disorder, don't let the door hit them in the butt when they leave- they're not worth keeping around.

You need people who aren't going to freak, and who will know what to do- like if it's a 'normal' seizure for you, when to not call an ambulance, and when to let you sleep it off, and when to note that something is different and get you help.

But you don't need a bunch of 'rescuer' types, who are all there to save you- because as soon as a med helps your seizures, they disappear. You need people who are there for you- not because you have seizures. That should not be the foundation for the friendship/relationship. If all they talk about is your seizure disorder, lose them ! You can still do so many things- and many things are still ok if someone is around with you- like swimming, camping, fishing, biking, concerts, etc.

Get a necklace (less noticable than a bracelet, but EMTs will still find it) that states your condition and meds (you can get some custom engraved- I"ve got so much stuff, I've got 2 medallions on one necklace - one has "see wallet info" on it !!). Keep more detailed info in your wallet, along with cab fare to get home from any hospital you might go to. I don't wear mine all the time, but if I"m going somewhere alone, I do. Keep a current med list with you (I keep mine on my computer, so I can update it more easily, and put the date on it that I updated it).

It's scary to feel vulnerable- it's embarrassing to be seen having a seizure. But it's not like you can help it- and would you feel negatively towards someone else if you saw them in the same situation? I'm guessing not. It does make things more complicated at times- but it doesn't end them.

 
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