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Medical Forum / Diseases and Disorders / Epilepsy / December 2003Dealing with loved ones
Hi, Has anyone out there expereinced problems with their partner over the epilepsy after many years of being together. After 18 years of being together my wife hit me with the fact that she couldn't go away with me for a weekend break because of the Epilepsy - even though I have been free of attacks for several years. She now tells me that I shouldn't have taken it personally and shouldn't make such a big deal of it. However it was below the belt and it hurt a lot, and I'm now having real problems forgiving and forgetting. Any thoughts? Hi Rick, I wouldn't get upset with your wife for being honest with you. What does she mean when she says she can't go away with you. Is it because she has the fear that you will have a seizure in public, and embarrass her? Is it because she isn't sure how to handle it? Maybe there have been other stresses in her life and she feels she can't handle one more potential problem. I wouldn't take it personally, I would take it as an opportunity to discuss and find a solution. I find myself saying I can't go places with groups because I don't want to be the one to hold people back. For example, we went to Utah to Arches National Park. It was very hot and we planned to take a long guided hike. But, I decided it wouldn't be a good idea because of the heat and I didn't want to ruin it for everyone if we had to hike back. The hike was planned for the following day. So we chose not to sign up for the hike. The next day came and I was doing pretty good. But our friend ended up being really sick with a sore throat and then I was glad that we chose not to do the hike, he would have been miserable. These same friends now live in Ecuador. They would love for my husband and I to visit. I don't think I could handle the long trip and then I fear there would be problems with the adjustment to food and water. I know some people can do this, but I've had too many bad experiences when I've gone on trips. So I tell my husband he should take my son and daughter-in-law. He understands. He's been with me when I've had problems on trips. Take care, Julie > Hi, > [quoted text clipped - 8 lines] > > Any thoughts? > After 18 years of being > together my wife hit me with the fact that she couldn't go away with me for > a weekend break because of the Epilepsy - .. > Any thoughts? It's possibly praying on her mind all the time. Especially if she has seen you have a seizure. It can be *very frightening* to see a loved one having a seizure. At least I doubt I'm unique in finding it bloody scary. And maybe on one level she tries to dismiss being concerned about it, ie telling you to ignore what she said. And on another level there is that nagging fear you are going to have another seizure, perhaps in public, or somewhere less than "understanding".... Maybe you understanding her situation would help her, IYSWIM. Anyway. YMMV, IANAD. Beth Howdy Rick! Everybody seems to be coming to the defense of your wife and I don't know why! They are ignoring your statement about not having had seizures for several YEARS! I may impose restrictions on myself because of my epilepsy. BUT If somebody else gives me what we both know is a flimsey justification and then later wants to just ignore it I would probably have some serious doubts about it. "I can't go with you because you have epilepsy - but don't take it personally!" C'mon people, get serious.  SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Hi, > [quoted text clipped - 8 lines] > > Any thoughts? RE: Forgive & forget. I'm all for "forgive & forget" but only after I've talked it out with the other person and we have come to an understanding about why it happened in the first place. If we don't do that, then there is a very good chance that the same thing will happen again. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy Rick! > [quoted text clipped - 30 lines] > > > > Any thoughts? "Dave ©¿©¬" <dave@_nospam_howdydave.com> writes: > C'mon people, get serious. I am. Why do you think he shouldn't understand her problems? Beth Howdy Beth! "understand her problems"? How can anybody 'understand somebody else's problems if the other person says something and then just shuts up like a clam and won't discuss it? The first thing that you have to do if you want to understand somebody elses problem is to find out what the problem is in the first place! You can't do that unless you talk about it! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > C'mon people, get serious. > > I am. Why do you think he shouldn't understand her problems? > > Beth Dave, and the rest of the group, I have not read the rest of the posts yet but already I am almost outraged at the support for this lady. I agree with Dave. She knew about the condition for many year and he also said he had not had a seizure for many years, what she did was lame and very selfish. Someone said something about her problems? What problems does she have other than being an insensitive bitch? My wife has had some illnesses in her life and not one time did I ever even consider not doing something with her because of one of these illnesses. She has never denied going anywhere with me because I have epilepsy. She is there in public with me to help me if I ever need her. She would like to see me get 100% under control but when she says it she does not say she would like to see it for here benefit, she would like to see it for my benefit. I suppose I am very sensitive about this issue, but if my wife would have made a comment like that to me, my next call would have been to my attorny's to file for divorce. Once she made that statement that was her true feelings and why go any further? Talk it out? Talk what out that she is an insensitive bitch? Where would you be then. There is nothing to talk out she has said in plain language I dont want to be around you. Give her what she wants. I apologize if this upsets some of you but a spade is a spade. If this had been 2 years into the relationship and all of a sudden she sees you have a seizure then it would be time to talk, but she knew about this for all this time and never said anything. If the truth be known I bet she has found someone on the side. > Howdy Rick! > [quoted text clipped - 30 lines] > > > > Any thoughts? Darryl and I have been together for 2 years and have been married since November 2003. I have never thought to and never will tell him that we can't do anything because he has epilepsy and I will never have him say to me that we can't do anything because he has this (within reason). Darryl informed me that he had epilepsy before we had met (as we met online) and I must admit that when we met his seizures were good, as far as only having simple partials once a fortnight. Darryl had brain surgery in May 2001. He had partial right frontal lobectomy. The operation worked well for about 9 months after which everything went back to the way it was pre surgery. I moved from Australia to New Zealand to live with him and after living together for about 4 months I was struck sh*tless that yesterday I had a fianc? that had pins and needles, to the next day turning around in a circle screaming. I didn't know what the hell was going on and was very scared. We made a few trips back to the neurologist to see why this was happening again and the only thing we could think of that could have caused it was experimenting with new meds. Darryl has complex partials 5-10 times a day that last 20-30 seconds each. He will rub the right hand side of his head, turn around in circles, eyes go in different directions and is screaming/laughing hysterically. That is on a good day. On a bad day he will have a seizure that will last about 5-10 seconds, have about 2-5 second break and then have another one. The most I have ever seen him have is 17 in a row, but he has had over 30. I wanted to share our story with you because I wanted you to know that I have been in places with Darryl when he has had some bad ones, and even though after 29 years of having epilepsy he still gets embarrassed when having them out in public, I never do. Darryl is 6ft 3in and I am 5ft 1in, he could throw me around like a rag doll during a seizure, but no matter what and no matter where we are I will always be there to hold him during and after an episode. I married Darryl for BETTER or FOR WORSE, IN SICKNESS and IN HEALTH and I will stand by that. I knew what I was getting myself in for when I married him. I love Darryl with all my heart and with that comes loyalty. After reading what you had posted I felt the need to tell you this, as I believe this is what being in love and being with someone is all about. I would NEVER tell Darryl that I don't want to go somewhere with him due to his epilepsy, it would prove that I feel ashamed and/or embarrassed to be with him (for the record I'm not). I do believe that your partner needs to re-evaluate her priorities, loyalties and work out where exactly her love lies. All the best Patsy > Dave, and the rest of the group, I have not read the rest of the posts yet > but already I am almost outraged at the support for this lady. I agree with [quoted text clipped - 66 lines] > > > > > > Any thoughts? G'day rick, i agree with dave on this. it is a particularly hurtful thing your wife said and it wouldn't surprise me if she had a hidden agenda here. if you've been free of attacks for several years then why all of a sudden has this become an issue? i'd ask her what the problem really is. pablo > Hi, > [quoted text clipped - 8 lines] > > Any thoughts? My parents told me it would be best if I didn't travel. I took my 33 year old self and travelled the world (Ireland, u.k, USA and newzealnd) by my self. I had no problems and it did my self esteem allot of good. Craig > G'day rick, > i agree with dave on this. it is a particularly hurtful thing your wife said [quoted text clipped - 15 lines] > > > > Any thoughts? > G'day rick, > i agree with dave on this. it is a particularly hurtful thing your wife said > and it wouldn't surprise me if she had a hidden agenda here. if you've been > free of attacks for several years then why all of a sudden has this become > an issue? i'd ask her what the problem really is. > pablo I agree with this and everything Dave has said. I'm very sad for Rick. Mary > > Hi, > > [quoted text clipped - 9 lines] > > > > Any thoughts? Hi Mary, Dave, Pablo......... Many thanks for all your thoughts. It's been two months now and I'm still trying hard to understand what the problem really is, and I'm trying my hardest to keep our marriage going for the kids sake at least (we have three all in secondary school preparing for exams so its a hard time for them not that anytime would be easy!). Her mother says I'm too easy on her and that she's been a right B***** that needs a severe talking to. The only trouble is how do you get through to someone, and try to support them if they won't tell you what's wrong. When she will talk to me all I get is "It's not you it's me, it's my fault because my hormones are all over the place". She will give me a kiss and cuddle, but the next second you'd think I was Josef Mengele, and had committed yet another heinous crime? I could deal with being told she doesn't love me better, at least I might be able to change that - I can't change the epilepsy! Anyway got to go Thanks Rick > > G'day rick, > > i agree with dave on this. it is a particularly hurtful thing your wife [quoted text clipped - 28 lines] > > > > > > Any thoughts? Rick, <snip> > The only trouble is how do you get through to someone, and try to support > them if they won't tell you what's wrong. When she will talk to me all I get [quoted text clipped - 4 lines] > I could deal with being told she doesn't love me better, at least I might be > able to change that - I can't change the epilepsy! I'm not an expert in anything and can't advise you but I know that it's sometimes cathartic to share things with others and if nothing else that what's this group is for. If only we could do more ... Hugs, Mary Hi Mary - I've tried to e-mail you several times from this screen name and another and each time it comes back that the message is undeliverable. Is there a communication secret between aol and zetnet? Please e-mail directly. Thanks, Tim > Rick, > [quoted text clipped - 22 lines] > > Mary g'day rick, i'm probably even less of an expert than mary would be, but i have to agree that if you don't sit down and talk out the issues with her, then things will only get worse and may progress to the point of being irretrievable. i find as a union rep that issues will never be sorted out by ignoring the problem, only controlled dialogue is effective. i wish you the best of luck. pablo Howdy Rick! "It's not you it's me, it's my fault because my hormones are all over the place". In my experience, that has meant one of two things: 1. The way a female tries to politely say: "I don't want to talk about it so kiss off!" or 2. The way a female says: "It's a personal prejudice of mine that I have to work out on my own. If I talk to you about it I will just end up confusing myself even more!" SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy Rick! > [quoted text clipped - 11 lines] > work out on my own. If I talk to you about it I will just end up confusing > myself even more!" Not all females ... Mary After 10 years of having a couple seizures a year, then a temporal lobectomy and going three years seizure free my wife still feels compelled to tell everyone she meets about her "epileptic husband who has brain surgery etc etc etc" Mike > > Howdy Rick! > > [quoted text clipped - 23 lines] > > > > http://www.howdydave.com Howdy Mary! I know "not all females"... Maybe even "not very many females" I just said "in my experience" (which I must admit is fairly limited.) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > Howdy Rick! > > [quoted text clipped - 17 lines] > > Mary >I just said "in my experience" (which I must admit is fairly limited.) Dave - is that because the ladies shy away from epileptics or because your epilepsy makes you too sensitive to tolerate the typical lady? Howdy! I say "in my experience" because I am an analyst and I know that the fairly slim sampling (I don't think that I can even say "random sampling") dictates that I can not make gross generalizations about the entire gender. BTW: Exactly what is a "typical lady"? When it comes to human behavior I don't think that we can make a single, all inclusive, generalization. Geez... I even get nervous about attempting to define "categories!" SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >I just said "in my experience" (which I must admit is fairly limited.) > > Dave - is that because the ladies shy away from epileptics or because your > epilepsy makes you too sensitive to tolerate the typical lady? Dave - I apprepreciate your perceptive rejoinder. I agree with you that there is no such thing as a typical human or female and admit that I was kidding - possibly inappropriate here. I'm glad you kept me in line. Tim Howdy Tim! TYPICAL human female! I thought that we were talking about a NORMAL human female! :) Quick, quick!! Where's my umbrella!? I'm gonna' get all sorts of sh.t raining down on me now! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Dave - I apprepreciate your perceptive rejoinder. I agree with you that there > is no such thing as a typical human or female and admit that I was kidding - > possibly inappropriate here. I'm glad you kept me in line. Tim > Howdy Mary! > > I know "not all females"... > Maybe even "not very many females" > > I just said "in my experience" (which I must admit is fairly limited.) I was being defensive about myself, not being critical, sorry. Perhaps you ought to meet me! Mary > > > Howdy Rick! > > > [quoted text clipped - 20 lines] > > > > Mary I can't stand reading these emails that are supporting your wife... man.....I would drop her and get someone that wants to be seen in public with you ...and start enjoying life outside or your 4 walls... man.... tell her get a life baby!!!!!!!! > Hi, > [quoted text clipped - 8 lines] > > Any thoughts? > I can't stand reading these emails that are supporting your wife... > man.....I would drop her and get someone that wants to be seen in public > with you ...and start enjoying life outside or your 4 walls... > man.... > tell her get a life baby!!!!!!!! That's too hard. You can't just drop someone you love and have committed your life to. Mary > > I can't stand reading these emails that are supporting your wife... > > man.....I would drop her and get someone that wants to be seen in public [quoted text clipped - 6 lines] > > Mary Your right about that Mary, but it's getting increasingly difficult not to do what Jim suggests. I still love her dearly, (although I don't understand why ?)I'm not sure how much longer I can go on. You can't just keep giving forever and getting nothing in return. Rick Rick- I'm not a counselor but I am a woman and I think you and your wife should really sit and talk right now before you get any angrier or upset than you already seem to be. What she said is really "eating away" at you and you guys need to talk about it. The longer you let this go on the more confused and hurt you'll feel about what she said and about your marriage. Right? I don't blame you for being upset though Rick, it would be nice if our loved ones understood us and epilepsy. I know how ya feel. Hang in there!! Ren > > > I can't stand reading these emails that are supporting your wife... > > > man.....I would drop her and get someone that wants to be seen in [quoted text clipped - 14 lines] > > Rick I know. But the way Jim expressed it was shallow and irresponsible. These problems need to be worked at and considered carefully, as you imply. I don't believe that such a sensistive man as I feel you are would be able to be so totally selfish. It would be good to think that this situation could be resolved happily and I'll be thinking about you both but I don't believe that hasty decisions aren't the answer to any human problem. Mary > I know. But the way Jim expressed it was shallow and irresponsible. These > problems need to be worked at and considered carefully, as you imply. I [quoted text clipped - 6 lines] > > Mary I'm interested in your point about being sensitive. I do seem to be getting more and more sensitive as I get older, and also much more emotional. I have noticed that other sufferers report similar feelings, is it something common to the epilepsy, the AED's or simply the stigma of being a sufferer. Do we over a period of time loose our resistance to the negative attitudes of others - 20 years ago I couldn't give a toss what people thought of me and the epilepsy but that seems to have been eroded away over the years. Or is it only because the prejudice has come from a loved one? I have never been selfish with loved ones, as I will quite happily give up anything and everything for my family. After all if I was selfish would I still be here trying after all this time, even my mother-in-law is surprised I'm still here. Anyway on a positive note I have managed to get her to start talking to me about things, and we are moving forward. It's hard and some very upsetting things are coming out, but I have every hope that we will overcome our problems. I'm not about to give up - after all I've fought the epilepsy for thirty years so it's still early days on this problem. Thanks to everyone for their input and support. I don't think we can ever expect a non-sufferer to understand us or the epilepsy, all we can hope is that they accept us for what we are - unfortunate victims. Rick <snip> > I'm interested in your point about being sensitive. I do seem to be getting > more and more sensitive as I get older, and also much more emotional. I think that might be something to do with aging - reaching the age of reason perhaps? I'm certainly more sensitive as well as emotional than I was when younger (I'm 64) and so is my husband (not an epileptic and the same age). But I'm not saying that epliepsy doesn't have an influence, just that there are other influences. > Anyway on a positive note I have managed to get her to start talking to me > about things, and we are moving forward. That's great! > It's hard and some very upsetting > things are coming out, but I have every hope that we will overcome our > problems. I'm not about to give up - after all I've fought the epilepsy for > thirty years so it's still early days on this problem. Believe me, if we all talked straight to our spouses I suspect that lots of upsetting things would come out. I've gone through that and although we were always happy it's even better now - in every way. So don't give up, keep at it and make life worth living. Mary Howdy! Have to agree with Mary again! I believe that this sensitivity is a sign of wisdom that comes with age. Hey Mary! You sound like a VERY interesting gal, wanna' go out for coffee one of these days? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > <snip> > > [quoted text clipped - 28 lines] > > > Mary > Howdy! > [quoted text clipped - 4 lines] > Hey Mary! You sound like a VERY interesting gal, wanna' go out for coffee > one of these days? Or even stay in. Your place or mine? Mary > > <snip> > > > [quoted text clipped - 33 lines] > > > > > Mary Howdy My Sweet! Let's stay in at your place! I' ve only got a little dinky apartment with a single bed and no sofa! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > Howdy! > > [quoted text clipped - 51 lines] > > > > > > > Mary BTW: If you don't want to mess around, will you be my guru? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy My Sweet! > [quoted text clipped - 63 lines] > > > > > > > > > Mary > BTW: > > If you don't want to mess around, will you be my guru? I'll do anything. My problem is that I can't say "no". That's how I've ended up with ... Hmm. Perhaps better not to go into all of that. Mary > > Howdy My Sweet! > > [quoted text clipped - 69 lines] > > > > > > > > > > > Mary > Howdy My Sweet! > > Let's stay in at your place! > > I' ve only got a little dinky apartment with a single bed and no sofa! OK, when will you be here? Mary > > > Howdy! > > > [quoted text clipped - 57 lines] > > > > > > > > > Mary "Mary Fisher" > > > Howdy My Sweet! > > [quoted text clipped - 5 lines] > > Mary My Dear, Sweet Crumpet! Alas... since we are but ships that pass in cyberspace I fear that we shall have to settle for fantasy. More's the pity! sigh... Too bad my draft board certified me medically unfit for duty, otherwise I should join the French Foreign Legion! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > "Mary Fisher" > > > [quoted text clipped - 12 lines] > Alas... since we are but ships that pass in cyberspace I fear that we shall > have to settle for fantasy. Oh bugger, that's what they all say ... > More's the pity! > > sigh... Indeed. If you ever change your mind I'm in Yorkshire. My Dearest Burning Passion of Desire! > > "Mary Fisher" > > > > [quoted text clipped - 23 lines] > > If you ever change your mind I'm in Yorkshire. I'll be there as soon as you send me a round trip ticket. Airline, freighter passage, anything - as long as I can get to you! p.s.: Don't forget the ground passage expense! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > My Dearest Burning Passion of Desire! You haven't seen me, have you! > > If you ever change your mind I'm in Yorkshire. > > I'll be there as soon as you send me a round trip ticket. I'm afraid that's impossible. They only make them rectangular, sorry to dash your hopes Dwahling, but there it is. You must try not to be so precise ... > Airline, freighter passage, anything - as long as I can get to you! How's your swimming? > p.s.: Don't forget the ground passage expense! No problem. I'll collect you from the beach. With a nice big towel of course and a cup of tea. Mary > I know. But the way Jim expressed it was shallow and irresponsible. These > problems need to be worked at and considered carefully, as you imply. I [quoted text clipped - 6 lines] > > Mary G'day mary, jim sounds a bit like one of those people who yells "JUMP!" when there is someone threatening to commit suicide. still, rick needs to exert some control over the situation for his own peace of mind. pablo > G'day mary, > jim sounds a bit like one of those people who yells "JUMP!" when there is > someone threatening to commit suicide. still, rick needs to exert some > control over the situation for his own peace of mind. > pablo I think you're right on both counts, and Rick does seem to be trying. Mary Howdy Mary! Absolutely! Too many people listen to that "Love is never having to say you're sorry" crap! Love is ALWAYS having to say you're sorry! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > That's too hard. You can't just drop someone you love and have committed > your life to. > > Mary > Howdy Mary! > [quoted text clipped - 4 lines] > > Love is ALWAYS having to say you're sorry! Yes. And saying you're sorry is a sign of strength, not weakness. It's very hard to do. Mary > > That's too hard. You can't just drop someone you love and have committed > > your life to. > > > > Mary
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