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Old 09-11-2007, 01:58 PM   #1
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Join Date: Aug 2007
Location: winfield,newjersey
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bevin 30 HB User
Question any one have advice on how to live with a seizure disorder and face it everyday ?

hello it is bevin again . how does someone with a seizure disorder just get up and face the fact in their life that they have a seizure disorder and take medicine every living foresaken day of your ever loving long day. The real question I have is how does Someone live with the seizure disorder every day for the rest of their life? What is the secret to living a happy full , exciting life.? what is the secret of daily living with a seizure disorder everday and not being resentful you have a seizure disorder? Need some major heavy duty advice on this subject. Need to know what daily living with this problem can be like and still be a happy and intimate person with someone she will eventually fall in love with.

Last edited by bevin 30; 09-11-2007 at 02:00 PM.

 
Old 09-11-2007, 03:44 PM   #2
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limeridge11 HB User
Re: any one have advice on how to live with a seizure disorder and face it everyday ?

I have had seizures all my life. I thought the same way at one time thinking I can't drive can't do this and can't do that. Untill one day I sat down and thought there are people out there worse then you are. Take being in a wheel chair and can't run ride a bike run etc. People that need people all the time like anxiety etc. Always think a seizure comes on and leaves and you go on with your day. Always think at least I can do this and that. You can do anything if you try. I am a person that use to get 6-7 a day now down to 1 a week. I workout at a gym enjoy like anyone else does. Always say to yourself I'm just like anyone else. Hope this helps Limeridge

 
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Old 09-11-2007, 05:36 PM   #3
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Join Date: Aug 2007
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bevin 30 HB User
Re: any one have advice on how to live with a seizure disorder and face it everyday ?

thank you limeridge for the advice to go on and think that i am like everyonelse but how do i deal with feeling like I am not like everyone else. i know you are right about others being worse off than I am but I still struggle to feel like everyone else and feel okay that i can still do all the things i used to do, but then when it comes to my love life that wil never be the same and how do I redefine my standards for finding someone who will love me unconditionally because my previous definition had some major flaws like too easily trusting of my dates when I should have been suspicious of them from the start. I wish i could believe everything about me is the same but i feel as though it is not and maybe I am wrong for feeling that way. maybe i am still the same me i was when I was younger and suffering from this problem but had no explination for it. I have to say that you have given me a lot to really reconsider and digest. thank you for all your great and thought proviking advice for me . At least now I know I am in good company for dealing with moving on from having a seizure disorder and living my life to the fullest. thank you for being so wonderfully kind to stop and answer my question. deep down in my heart i know you have given me the most absolute right and correct advice which is also the most true advice that i will ever receive. bevin

Last edited by bevin 30; 09-11-2007 at 05:37 PM.

 
Old 09-11-2007, 08:33 PM   #4
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Location: Southern Illinois
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aussie308 HB User
Re: any one have advice on how to live with a seizure disorder and face it everyday ?

Bevin, what you are feeling is perfectly normal and even healthy. It shows you are not wanting to give up on yourself and your life. I know, I went thru it too, as a newlywed. I did not feel like I could be a good wife and mother to my teenage son with all the crap of dealing with the seizures and finding meds. that didn't have horrible side effects. Plus the lose of reedoms was very hard to deal with. I was angry at myself, my hubby and everyone and everything else in the world. It was a very hard time but I got thru it. I don't really have a magic formula for you but what you are going thru is the anger phase of finally coming to accept something. I have finally come to accept that I have seiz. and that is not going to change. But that does not mean I am not still a good and worthwhile person. I am still able to give and recieve love, laugh, learn and help others to get thru what they are going thru. Part of the battle is finally coming to acceptance and doing your best to control your situation, not let it control you. it is not easy, but you can do it. Believe in yourself. Try not to look at what you can't do, but what you still can. It takes time, but it will happen.

I hope this helps and gives you some hope. Please try to stay positive and feel free to reach out to the people on this board, it's a good, supportive group.

best of luck to you, Laura

 
Old 09-12-2007, 12:08 PM   #5
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neurowreck HB User
Re: any one have advice on how to live with a seizure disorder and face it everyday ?

How you view the disorder is going to have a much bigger impact on how a future mate deals with it than how they will see it without your perspective- so until you can cope with it, I wouldn't suggest even thinking about a mate. You will get to that point- but first you have to be comfortable in your own skin. I've had seizures since my teens- though not diagnosed until my early 20s. I'm in my mid 40s now. I worked up until 3 years ago. I oversaw the other employees on my unit. Seizures didn't hold me back, and I didn't let my view of having seizures do that either- it's a choice. I don't mean to sound 'mean', but it's really up to you how you live with seizures- you can make it the focus of your life, or find a bunch of other things to fill your life and not be a 'victim'.... all of us have the decision to be victims or victors. No disorder can 'make' us be either. It comes from within.

Sure- there are limits- but there are ways around those limits. Have you called your epilepsy foundation to find out what's available in your area for epileptics who need transportation or other assistance? Are you working or in school? Do you have the things you need there? The Americans with Disabilities Act is specific on what's allowed for to help keep you employed.

In a lot of ways you are like everybody else- so many people have health issues - vision, skin, arthritis, fibromyalgia, diabetes, kidney problems, cancer, multiple sclerosis, etc.... and they go through the same questions- and their diagnoses don't make them any different than the rest of us. They just have things they have to do to manage thier lives a bit differently. In the overall scope of things, big woo. You still have your mind, goals, dreams, hopes, etc. For some disorders, those are totally unrealistic. For us, it just takes some reworking of some plans. But it doesn't mean we're branded with a big neon "S" on our foreheads.

Go through the anger (that's normal) , and then move on with life. Staying angry just gets you an angry life- there's more out there. You'll meet someone who won't care if you have seizures, or six toes coming from your earlobes. The 'right one' will be supportive- anyone who isn't doesn't deserve you to begin with.

You are not your seizures.

 
Old 09-13-2007, 02:32 PM   #6
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Join Date: Aug 2007
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bevin 30 HB User
Re: any one have advice on how to live with a seizure disorder and face it everyday ?

Quote:
Originally Posted by neurowreck View Post
How you view the disorder is going to have a much bigger impact on how a future mate deals with it than how they will see it without your perspective- so until you can cope with it, I wouldn't suggest even thinking about a mate. You will get to that point- but first you have to be comfortable in your own skin. I've had seizures since my teens- though not diagnosed until my early 20s. I'm in my mid 40s now. I worked up until 3 years ago. I oversaw the other employees on my unit. Seizures didn't hold me back, and I didn't let my view of having seizures do that either- it's a choice. I don't mean to sound 'mean', but it's really up to you how you live with seizures- you can make it the focus of your life, or find a bunch of other things to fill your life and not be a 'victim'.... all of us have the decision to be victims or victors. No disorder can 'make' us be either. It comes from within.

Sure- there are limits- but there are ways around those limits. Have you called your epilepsy foundation to find out what's available in your area for epileptics who need transportation or other assistance? Are you working or in school? Do you have the things you need there? The Americans with Disabilities Act is specific on what's allowed for to help keep you employed.

In a lot of ways you are like everybody else- so many people have health issues - vision, skin, arthritis, fibromyalgia, diabetes, kidney problems, cancer, multiple sclerosis, etc.... and they go through the same questions- and their diagnoses don't make them any different than the rest of us. They just have things they have to do to manage thier lives a bit differently. In the overall scope of things, big woo. You still have your mind, goals, dreams, hopes, etc. For some disorders, those are totally unrealistic. For us, it just takes some reworking of some plans. But it doesn't mean we're branded with a big neon "S" on our foreheads.

Go through the anger (that's normal) , and then move on with life. Staying angry just gets you an angry life- there's more out there. You'll meet someone who won't care if you have seizures, or six toes coming from your earlobes. The 'right one' will be supportive- anyone who isn't doesn't deserve you to begin with.

You are not your seizures.
thank you neuro wreck for all the tough advice that i needed to hear. i think that not having deal with my anger from the day i was diagnosed was the wrong tactic to take. your right about me not having a big neon s branded on my head. thank you for the tough talk and encouragement. thank you for setting me straight with the staying angry because it only leads to just an angry life. I will take your advice about me feeling angry to heart and I will deal with my issues head on with strenght and courage of conviction. thank you for all your wisdom and encouragement. I needed some to tell me that I have to learn how to go on with life and move from my anger and that The right person will be supppiortive and those that are not do not derserve me or my attention to begin with. bevin

 
Old 09-13-2007, 02:43 PM   #7
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Join Date: Aug 2007
Location: winfield,newjersey
Posts: 49
bevin 30 HB User
Re: any one have advice on how to live with a seizure disorder and face it everyday ?

Quote:
Originally Posted by aussie308 View Post
Bevin, what you are feeling is perfectly normal and even healthy. It shows you are not wanting to give up on yourself and your life. I know, I went thru it too, as a newlywed. I did not feel like I could be a good wife and mother to my teenage son with all the crap of dealing with the seizures and finding meds. that didn't have horrible side effects. Plus the lose of reedoms was very hard to deal with. I was angry at myself, my hubby and everyone and everything else in the world. It was a very hard time but I got thru it. I don't really have a magic formula for you but what you are going thru is the anger phase of finally coming to accept something. I have finally come to accept that I have seiz. and that is not going to change. But that does not mean I am not still a good and worthwhile person. I am still able to give and recieve love, laugh, learn and help others to get thru what they are going thru. Part of the battle is finally coming to acceptance and doing your best to control your situation, not let it control you. it is not easy, but you can do it. Believe in yourself. Try not to look at what you can't do, but what you still can. It takes time, but it will happen.

I hope this helps and gives you some hope. Please try to stay positive and feel free to reach out to the people on this board, it's a good, supportive group.

best of luck to you, Laura
laura thank you for letting me know what i feel is normal and that I am not the only one who has felt angry at themselves or people around them. i wil not let this diagnosis control me but i will learn to deal with it and manage my care better i will now have confidence in myself and believe in myself . I Now believe that I am just the way that I used to be but with one suddle change myphysical and rproductive health of my self comes first. I am now going to be nothing but positive. Thankyou for being so supportive and helpful with all of your posting advice to all my questions. i will probably be posting more questions to answer in the future. bevin

 
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