why do people say E has destroyed their life??

[Belinda5000]

I've had it all my life basically so I know I don't count, since I haven't been able to work or have never had a license. All I've done is finish school never went to college but I've been married to the same man for almost 23 years. He's my strength and has always been there for me when know one else would.

 

[skyfire322]

I was diagnosed during my freshman year of high school. Before then, I lived a relatively "normal" life, then once I started having episodes I had to adapt to the situation which was pretty hard.

I can understand when someone says it "ruined" their life. I still have those moments every now and then. But, I find that it is easier to just accept what I have and move on. Why have something you can't control, control your life?

 

[seagull]

Not destroyed mine but if I had migraine every day then it would

 

[Belinda5000]

I consider myself normal except when I have my seizures and I won't say I'm not normal.
We always could've ended up with cancer or like my mother who is diabetic she lost a leg because she didn't take care of herself; I'm better off than a lot of people.I can at least walk I have asthma and I'm not stupid enough to drive were I could seize. It could have been your entire life with E also.

 

[seagull]

I had breast cancer some years ago .every sodding day I reminded bc lymphomdema and bad arthritis same arm What get me down most is this sodding iPad that pocessed by devil it has me in tears cos I keep forgetting what I surpposed to do no one show me they got no patence I see people's face drop when I ask that gets me way down.No one understand I little on slow side these days

 

[RanMan]

I've been diagnosted with E since 1979. It hasn't "RUINED" my life, I just had to make some career changes and learn to adapt to to my E and the meds and life has been pretty good.

I have a wife (39 yrs) 2 grown kids, house, car, job (until I retired in 2004)dog, etc.
I've learned to "manage" MY situation (although everyones situation is differant)

I refuse to let epilepsy define me, I define myself not as an Epilectic but rather a person with a seizure disorder.

Randy

 

[seagull]

I think you make adaptions through out life for different things it nature of things.
Yes people who have sz everyday and made Ill with it I really don't know what to say except God dice player but these days things not as bad as 20 years ago.
Sadly we all dealt a hand and you have run with it.It hard to say and hard to do

 

[Dutch mom]

I do know many children and families for who the epilepsy really is destructive and has influenced and still influences their lives continuously in a negative way. Severe childhood epilepsy and epilepsy syndromes as well as side effects of heavy medicine cocktails and other treatments like ACTH, prednisolone and other hormone treatments as well as a ketogenic diet or non successful brain operation, can make a kid continuously suffering, can make his or her life very uncomfortable, can be disastrous for their motor and mental development, can cause severe degeneration and mental retardation, can affect learning abilities and can cause severe behavioral problems.

Apart from having to cope with seeing your kid or sibling so miserable, many hospitalizations, visiting doctors and specialists, applying for all kinds of adaptations, having to move to another house that's suitable for your kid, special needs devices, care facilities, education and daycare, limited accessibility, loosing jobs and careers, having sleep problems, relational problems, other kids who need attention etc. etc. can influence a families live enormously.

Epilepsy hasn't ruined my life, however my son has a disastrous syndrome and is severely handicapped, we've learned to cope with all this. But I certainly do know families that rightfully can say it has ruined their life

It depends a lot on how severe the E is, how well the E is controlled, what the consequences are and how you personally can cope.

 

[Belinda5000]

I heard it all growing up about all the attention I got and it was jealousy.I ended up in the hospital I don't know how many times; My epilepsy was never controlled worth a flip either and there weren't drugs out for epilepsy except eight when I was growing Tegretol didn't come out till 1974 or 75.

 

[seagull]

I knew lady who had two boys both with Lennox and I know Lennox proberly as bad as you can get
I read your post DM and very aware life not easy for you as I went through similar things myself with my daughter who is now in residential home..
My daughters situation was not as hard as yours but there were times I wanted throw towel in.
My girl went to special boarding school for children with e and some Lennox there but they did not take that many with it for obvious reasons as I sure you be aware of.
life was never easy but I tried make sure she and her brother had best I could do.In my daughters case she was ambulent and often come over thump life out of me and her dad.
My son passed exams went to top grammar school and is now GP.My husband me not that clever but like think we did good job as parents in fact I took him to Amsterdam as good boy present when he was eleven.
I have e myself it just unfortunate accident and daughter infection.I think you have accept hand you dealt in life what's the alternative.I expect you like me cried a few tears over the years and asked God why me or is it my fault did I do something when pregnant.Questions that for me will not be answered and I do fret about what happens when husband and me pop our clogs(sorry clog ephamism)my husband is able to take things day at a time for me that's not so easy but he is right.
Like you I made sure we as family did not let it define us I had days pulling hair out as you say social service hospitals and I had give up my job house adaptions constant arguing with social workers to get funding for all her needs,in retrospect it was hard for them they had to justify what and where tax payers money went to their bosses and I know they wanted help me and everyone else
What I found when she was baby everyone wanted to help then friends and family started dropping away When she was not so cute
My husband and me tended do shifts one be home with daughter other out with son
But on the whole my girl has done more in her life than kids with no special needs..
I agree with everything you say about disability in general not just E
I feel so sad I see normal kids with parents who do nothing with their kids i feel like slapping those parents
I remember my son and daughter meeting princess Diana My kids got an achievement award my daughter for being stoic and son being such lovely boy helping his sister.They had special tea with Diana the prime minister and some other nobs .I remember one parents saying to Diana two roads in life one for living and one to Calvery
So I guess it down to indervidual

 

[Fedup]

I have had E all my life as well and know no other life, epilepsy has not destroyed my life and yet it has, at lest that is how it seems. I think it is worse if you develop epilepsy in your teens or as you get older,for the simple reason you realise the full impact of the changes in your life and the effects of medication. The thoughts and fears which run through your mind at being told this has to be a sense of devastation and shock and I truly feel for anybody like this.

In a sense epilepsy has destroyed my life, yes in ways I am lucky but it does not feel like that at times. I had a good time growing up even with all the restrictions until I started to realise the difference between what I wanted to do and what I was allowed. I have cried with despair and anger, wondered about life without medication, laughed at the stupidity of some and very angry at the stupidity of those who were suppose to help me. I still have the fear of not waking up after a seizure, still wonder what a day without this and the drugs is like.

So yes in ways I believe Epilepsy has ruin my life, I am not angry, wishful maybe and this is what I think.

Epilepsy is a life in itself which not only confuses but can place an everlasting fear and can make you doubt yourself without reason. As green a grass or beauty you will not find in my opinion but to find hope inside this life can be overwhelming. Truth be told bravery and compassion to find in this life of mayhem is hard but an answer you will find in a life and story of hope and glory. To live today the same as tomorrow is normal for me, among the consensuses of time which growing up were few, today my one wish is to know a day without epilepsy or medication, to see a world which in all its beauty has extra love. That one day would be life to me, I would not care what tomorrow would bring. I have often wondered growing up if this place would miss me and peace I would find but I figured out that my life is mine and ruled by no one or anything except me. Life is worth living and in living life we experience the happiness and love which can only come from understanding. Coping was and is never easy but to cope means to live.

Yes Epilepsy has changed my life I am told but this is my life and the only life I know and I intend to enjoy the parts I can.

 

[Dutch mom]

@Seagull and Fedup.

Yes, just like you I have had may bad periods, cried more tears I ever wanted to cry and have been desperate many times. especially in the early years when we didn't knew exactly what he had and how serious it is. After finally getting a disastrous diagnosis at age three the acceptance process could start, because you are forced to realize that it is what is is and it won't change, you have to make the best of it, for him, for yourself, your marriage and your other kids. But I must say the seizures are the worst part, seeing your child suffer from so many seizures is worse than all other limitations, handicaps and special needs because they are having the greatest impact on his quality of life and are the least predictable and it's not possible to solve them with adaptations and special devices etc.

You certainly can relate to what I mean. And even among kids with Lennox and less severe types of E. we can't compare in terms of how heavy and bad things are. While the most serious disabled kids need the most basic care and the most adaptations, more mobile kids and kids with less or no mental retardation tend to have more behavioral problems and more problems in education or coping with their limitations themselves, which can be very difficult for them and their families too.

Just like you I do realize very well that having this wonderful, innocent, pure special needs kid has brought us many special things. friends and experiences which we never would have had without him. Like meeting princess Di, wow...! I bet you'll never forget that.

@Belinda, one thing I've learned from knowing and meeting many families with children that have severe epilepsy: E. can certainly destroy your life even when you don't have E. yourself. When you kid is more uncomfortable than happy 24/7, when you kid is crying, constantly vomiting, suffering from pains and constant seizures most days or each day, when you kid is having serious problems sleeping, has serious behavioral problems, self-destructive behavior like auto mutilating or even has died from a seizure or medical complications. And when you have serious problems with accepting and coping with it being a parent or a couple.

 

[Porkette]

Hi Belinda,
You've brought up a very good point. I've had epilepsy since I was 10 yrs. old (53 now) and I never let it get to me. It was my family and friends that it bothered but I have carried on in life not letting the epilepsy bother me I've been married for 29 yrs., I work full time in Special Education where I can relate to many students who have neurology problems. I also think about many famous people who have or had epilepsy and they never let it stop them. Look at Einsteen, Vincint Vangho (spelling) , Prince, and Joe Walsh who has played lead guitar for The Eagles, Elton John and many others they didn't let the epilepsy stop them.
Personally I think the world needs to wake up and realize they have nothing to be afraid of if a person has a seizure we all live normal everyday lives just like everyone else.
Wishing you only the best and May God Bless You!

Sue

 

[Belinda5000]

If anyone had a right to say it destroyed there life; I have relatives that would agree that it has destroyed mine. But I met my husband through a support group and I made some friends at epilepsy foundation in Atlanta. I tried more drugs than i ever thought was possible for my seizures and I had a VNS,RTL,
made friends in Canada almost married a Canadian.

I became a very determined person who doesn't give up very easily. I'm 54 years old and my sz's been all my life.I met the love of my life because of my epilepsy and I woundn't change a thing I've been married going on 23 years.

 

[Topcat]

I miss driving, riding a bicycle, the hobbies I used to have and yes even working but I have adapted; so while it has negatively impacted my life, I don't think it has ruined it.

 

[Sabbo]

For me, the epilepsy ruined my life when the seizures got worse. I had chosen not to drive long before they did, but had completed my BS degree. Once I began having Complex Partial seizures, it forced me to give up one of favorite things--cooking. It has also prevented me from working.

 

[Fedup]

Belinda5000

I am 54 years old as well and I have been told that there are no more drugs for me to try. I meet my wife while she was out walking, like you I am very determined. I do not complain about my epilepsy, its been my life and all I have known since birth.

 

[seagull]

at end of day you mourn for child she could have been the things she could have done and the daughter you never got.
lady next door to me is over a hundred and has son who nearly 70 with servere brain damage he taken very ill 6weeks ago and they thought not going to live,that poor woman stayed with her son for 48hours and at her age.The son got better and back at residential home.
The poor woman deaf blind no sense of taste very depressed,Her daughter who lives miles away said her mother just wants rest in peace now but fighting nature for her sons sake.
poor woman her daughter is a hoarder and local council are taking daughter to court.The old lady so worried no one should have worries like this when they 100i so admire her and her IQ is 120 I really don't know if that good or bad at this point of her life. Mind you I have laugh she was driving car up 5years ago if anyone saw her they kept well clear she never went over 15miles per hour she also speaks 5 languages and still gives private classes and mainly to the young men good on her.
70years of blaming herself for her sons brain damage worried sick about his future and her daughters hoarding yet she be first to say life not a pity party although everyone at sometime entitled to pity party she also don't want admiration she says destiny and believes in reincarnation as reasons for things and she might have good point plus she knocks bottle of whisky back a week.What ever gets you through.I not ready for bottle whisky a week but if I got to 100 I review it

 

[Elsie]

I think people say it ruined their life because they had one view of what their life would be and things turned out quite differently. Perhaps they have not been able to adjust to their new reality. I guess all diseases do that in a way.

I would never say it ruined my life, but it certainly has impacted it. I was a smart kid, intelligent, good grades until E struck. Few years down the road I couldn't learn like I was used to, grades slipped. I gave up on more education, and the chronic depression never helped either.

Being tired and low energy all one's life really changes things. I'd say the E is like a constant background white noise. Even though I've been controlled for years, there still is this little fear, like a what if. When my sodium thing reared it's head for the 2nd time, my thoughts were not about the sodium so much as to what if I have to change meds and the next ones don't work like the last ones did...how will that change my life. Not a ruined life, a changed one. I know that is better than some.

 

[joey]

I wouldn't say it ruined my life but it definitely made it harder.