why do people say E has destroyed their life??

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Sometimes I bitch about things think we all do some days it the e other days something else don't think be human if we didn't
 
E has made me a stronger person than I think I ever would have been and I have learned that I am better off than a lot of people who's seizures are a lot worse ; I could have been been put away in a mental hospital I was born in 1961.I'm lucky my mother wasn't like that my seizures were never controllable.
I grew up in a time when very little was knownabout epilepsy
 
I going away Monday London few days Luxenberge West Country I won't let it stop me but I always have nagging feeling sometimes give into that feeling and what I should be looking forward to I start to dread.I also fret I going let people down.It migraine I worry about more than anything then end up panic attacks just incase head ache starts.But I try very hard live my life.
it all relative.When BelindA first posed question I totally disagreed with her but you read other posts different points of view people have it different levels and lives I don't walk in their shoes visa versa.I going away should be excited but I stressed out about getting stress that kicks it all off.So on the whole it do stress me out just hoping don't let people down because of it.
I have bad arthritist I dreading that getting painful I not be able carry my stuff that worrying me make me stressed out.I won't let it direct my life but if spend time worrying about memory head aches panic auras which I getting uptight about then I guess e influencing more than I admit to.
I would say memory and headaches are devil on my shoulder every day memory certainly daily battle
 
Hi Belinda,
Just like you very few people ever spoke about epilepsy when I first got it back in the 1970's. I personally don't think it's that bad but it can be a pain for me when I need to go places. I'm just grateful that I'm not sitting in a wheelchair like my aunt was do to MS or paralyzed. Life can be a lot harder for others than it is for me because of my epilepsy. I wish you only the best and May God Bless You!

Sue
 
I think belindA was referring to things like unable to driving then hoping people offer lift and you suddenly see people can be selfish for instance people drive passed your road to supermarket knowing you not driving or a bus route watching you paying out for cab struggling.People not giving you a break for lapse in memory when had brain surgery.Belinda got good point
Not nice and it hurtful but there total Arse holes in this world
 
I think what makes it hard is living around people constantly who will never understand what you are going through...and I would say that although E hasn't completely ruined my life..it sure had some major influences in some very irrational decisions in my life...and now my life is much harder because of it..my epilepsy has made me a harsher parent...short tempered...more outspoken, unreasonable, and argumentative...in a bad way...I ended my marriage...and it was during a time where I was just "numb"...and I regret it all the time...it has altered my entire personality....and I hate it...and I had 25 years of normal life...so I have something to compare it to...I do know what I am missing out on...I carry the burden of knowing from my family every time I have a seizure just how hard it is on them...my own mother tells me all the time how my epilepsy is harder on her than the death of her own son...it never ends...family blaming spouse or boyfriend for stress on me for seizures, and me being the go between for the that trying to keep the peace...everyday crap that you have to deal with, and this crap on top of it...ruin my life..maybe a bit extreme...but I sure as shit was way better off before I was having seizures....I was a different person...and I didn't have to constantly reason with myself and second guess my ways of thinking and wonder if that's a good or bad way of doing things...and constantly try to remember what the f$%k I just said, or what someone else said...that shit just gets old..every...day....
 
Carpendergirl,
I mentioned in an earlier post (above) that E hasn't "ruined" my life.
I too have 21 years to compare my old life to my existing life.
It has "changed" my life as I have learned to adapt to my E.

I've had the same experiences that you've mentioned in your post for 37 yrs now (exept I'm still married for 39 yrs.) and not being able to participate in any sports or operate machinery, but I still drove until my licence was removed in 2002.

Randy
 
Randy,
Anyone can adapt to E you were given the choice I wasn't and you had years without it.Other people who have E don't understand that I also have asthma ldianosed when I was 5 mths old and also A-fib my heart and arthritis I have never been with out a chronic condition in my life.Epilepsy been in my life since about 1963
 
Belinda,

I'm glad to hear that with all your conditions, you seem to be coping very well.

I too have other ailments.....Ulcerative Colitis and Chronic obstructive Sleep Apnea which I'm also coplng with.
 
everyone's situation is different I guess...and I would have to say that the people in your life can have a direct effect on your own insight on just how bad you can let your epilepsy effect you as a whole....sometimes I let it eat me up inside and just put me in a complete depression for several weeks...other times I tell everyone around me to f$%k off...that I didn't ask for this...and if you can't handle it...stay the hell away...and usually that's me 90% of the time...I get tired of them expecting me to wave a magic wand and just "make it go away" altogether...lol...or change my whole personality...and yes, I have adapted..don't we all? we really don't have choice do we?? lol
 
??????Destroyed??????

There are many different ways that people may feel their life may have been affected by E. One person may feel that having something as simple as 'not being able to drive' has destroyed their life while someone else may feel their life is fine until they are facing huge medical bills as a result of all of the testing needed to deal with their E!
Every person is going to have a different capability of dealing with the fact that they are facing a life with E as a part of their life. Each person is going to deal with this in a way that they need.
It may seem to some people that someone is 'overreacting' to dealing w/E. While some people may feel 'How can that person live with E that is as bad theirs is?' because the person that has a severe case of E has learned that 'I may have a bad case of E, but many others have to deal with problems that are much worse than mine!'
This means that a person can only 'deal' with their having E in a way that 'they' feel is correct for themselves.

ACsHuman
 
If someone thinks there life is destroyed because they can't drive that is a weak person ! If I can make anyone should be able to make it and I have made it on my own when I lived on SSI( not social security) back in the 1990's paid my rent utilities.I lived on $450.00 a month
 
Living A Life W/O Money and Many 'Normal' Things!!

I completely agree with what Belinda says. I lived on $203 dollars and month an $200 dollars in Food Stamps for several years. Luckily my landlord trusted me and allowed my lot rent to go unpaid for that time. I was waiting for SSA to make decisions on my SSDI claim. I was able to pay all of the built up rent when my case was approved, but that took over 5 years.
A person learns which bills they can let go unpaid for the longest time. I did that so I would be able to keep heat and electricity in my trailer.
I now know that I will have no problem living on my monthly payment from SSDI. Most people think I'm nuts when I tell them that I can live like a 'king' on the amount I get monthly.
Sometimes I think that many of the people who live check to check and on credit need to be put in a situation like that to show them that they DON'T have to have everything the people they know have!
People who have E have learned how to live on small amounts many times because they have learned that a person w/E can live on amounts that other people would be scared to even try to exist on, including understanding from many other people.
WE can feel very good about ourselves in many ways because of this! :clap:

ACsHuman
 
I wouldn't say the epilepsy ruined my life, yes I had some hard times in the beginning but it made me a stronger person emotionally. I would say what has been the biggest problem with my epilepsy is my family not wanting to accept me and turning away from me do to the fact of my epilepsy. They would prefer to spend all their time with my brother and not once in 30 yrs. have my parents ever had both my brother and I together with them. Personally I feel my parents are ashamed of me and my epilepsy but that's there problem not mine. Wishing all of you only the best and May God Bless You!

Sue
 
My sister once said she could never have lived like I did and I told her you know what you can do until you have to; I refused to ask my mother for help and I did it on my own.:twocents:
 
Rejection By Family Members

Porkette,
It seems that many times a person's parent(s) and others do things that are very hurtful. They seem to have no idea how hurtful their actions can be, or they don't care how much they are hurting someone. This in turn can give a sibling, in your case your brother, the feeling that they are superior to their sibling or siblings.
After this has happened many times the parent(s) don't know how to apologize for what they have done. There also are case where the parent(s) don't care how much pain they are causing someone. they may actually be doing this on purpose to make themselves feel good. These are the worst ones! They actually get pleasure from inflicting pain on one of their children or others.
I had a narcissistic mother who enjoyed seeing me hurting. You have a brother who thinks he is better than you, possibly because your mother told him that he was better because you have E.
This is something that we have no control over. All we can do is realize how hurtful our parent(s) actions were and be determined to stop this from happening to anyone if we see it getting started.
I know in my case I laugh at what happened to me because it shows to me how my mother felt she was SO superior, yet she was SO ignorant to what was right in front of her face!

ACsHuman
 
Me, I have nothing to complain about. I'm totally under control with meds. But I know this woman who I met on a site called, "Daily Strength". She has seizures all day long. She has to wear head gear so she doesn't hurt her head. This "IS" a woman who's life sucks due to E. But she never complains about it. She can't leave the house, she needs someone there to take care of her....she can't even walk around her house without worrying.

I'd say E has destroyed her life.

(Please don't get mad at me for saying this. This is "MY" opinion)
 
Family members lives who have been destroyed because of there own selfishness I know all about that I have one sister whose kids will have nothing to do with her my mother raised some her ex and old boy friend. She ruined her own life with drugs and tried over dose on my meds twice. Her kids think more of me than her. That's pretty bad.
 
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