I just need to vent

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Belinda5000

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I'm tired and nothing works and I'm sick of trying new med.
I know there are ppl a lot worse off than me.
I've had 5 seizures this months I know and I've been having seizures just about all my life. I've had them more than 50 years I had 4 seizures yesterday.
I have been on so many drugs it's not funny.

It's bad when your family has hardly any thing to do with you won't call you than they swear they told you something but I have a great memory. They just expect me to tell them what's going on with me. I'll never forget when my mother called me retarded ; but that's not something anyone would ever forget. I've found myself to be a strong person emotionally I was never into drugs I knew they would send my seizures through the roof and I had enough of that iver the years with out even trying I'm med resistant I'm allergic and when ppl come out ask me why I don't drive today I just say a lot of ppl don't drive my mother in law didn't she just stopped for whatever reason..
 
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Sorry you are having a difficult time with family, Belinda. Keep venting here.........

Sounds kinda familiar, although I've only had E for 35+ years. My family doesn't communicate with me. They think everything is splendid with me because I haven't been able to work for the past 30 years. That ISN'T the life I wanted!! If I do tell them what is going on with me, they have the audacity to reply with, "We all have problems." If you only knew the hell of having seizures, is what I so badly want to reply, but I keep my mouth shut.

Hang in there!
 
When I was growing up my mother use to say to me there are people worse off than you Belinda, but she never said I know Belinda there are people better off than you Belinda.Doctors always told her I would grow out of my seizures add she believed it. She never looked for other doctors she kept me with the same neuro till I was about seventeen years old.

When I got out on my own I changed neuro's to his partner. The first thing I did was have him take me off Dilantin than Tranxene. I had been on Dilantin 26 years and Tranxene years.
 
I'm with Cint on this one Belinda. My family doesn't think seizures are a big deal. But they do think it's funny. I over heard a conversation they were having once, and a cousin of mine asked what's a seizure? My sister said, that's when they throw themselves on the floor and flop around, haha. That really hurt my feelings. But I never said anything about it. I have distanced myself from the last remaining family I have left. Screw them! As long as I have my wife and kids.
 
I have one sister I talked to yesterday who ask how I was doing, and I said about the same. She knows about all my health problems and doesn't mention them unless I do.My mother will bring up my seizure if I don't like that's the only thing about me.When I got my VNS I got a call from her 2 months later and I was in pain all the time her response was wouldn't you rather be in pain than have seizures and I said I'd rather have neither.
 
I'm tired and nothing works and I'm sick of trying new med.
I know there are ppl a lot worse off than me.
I've had 5 seizures this months I know and I've been having seizures just about all my life. I've had them more than 50 years I had 4 seizures yesterday.
I have been on so many drugs it's not funny.

It's bad when your family has hardly any thing to do with you won't call you than they swear they told you something but I have a great memory. They just expect me to tell them what's going on with me. I'll never forget when my mother called me retarded ; but that's not something anyone would ever forget. I've found myself to be a strong person emotionally I was never into drugs I knew they would send my seizures through the roof and I had enough of that iver the years with out even trying I'm med resistant I'm allergic and when ppl come out ask me why I don't drive today I just say a lot of ppl don't drive my mother in law didn't she just stopped for whatever reason..

You vent gal.My mother called me many cruel things in fact I reluctantly went over to her home earlier tonight where I was told to F off in front of about 20 people.
No one in my family make effort help me I have empathy and sympathy with you.No one wants sz or take these medications.i in your age group and I think our parents came from generation of ignorance,it up to next generation pick up the baton still more education is needed.
you not on your own hold in there
 
You're right seagull. Not only family can be idiots to us about seizures, friends (ex-friends) can be also. I remember my first seizure when the marbles in my head stopped rolling around and I was able to focus. I was in the hospital room with another guy and we started talking. I told him what happened to me and he told me not to be embarrassed. I had no idea why he would tell me that until time went on. There are so many people that make fun of us, it's unbelievable! They think we're crazy when we have a seizure. Belinda, don't you let anyone make you feel sad about what we have. :hi5:
 
You say got diabetes no one gives it second thought say e and think it lepprosy still lot of fear.
In my lifetime a man or woman could have marriage annulled if found out had e.
I lived near epilepsy village thank god do not exist anymore it closed early 80s people be on ground having sz no one to help.There many clever people. And all treated as retarded often they be found in public dead most gave up will to live..Some had been put in when children lived in these torcher villages 60years or more mostly treated by first generation hard core medications sodium Amytal mandrax poor people like zombies kids in town either avoided them or took p out of them...Also in mental hospitals they treated as if had serious mental illness.
To my shame I was not much better I had lovely boyfriend then when we started sleeping together I saw his phenobarbital and epinuton beside his bed he wS same lovely man but as soon as I saw that I became scared and dumped him.Everyone saying must been his E made him ott with cleaning and made excuses for any silly thing that not remotely to do with e.He was first devision footballer he had to lie he had it.i won't name him that be wrong but he West Ham player 1965 playing for England and won so any English who likes football would proberly guess who he may have been.
the worse thing I was training be a nurse.When I started sz the doc said he would not write my diagnosis or been instant dismissel all these things happen in my lifetime.I remember to this day my ever caring mother saying people like me should not have children well I did and one is a doctor unfortunatly my daughter got brain infection and she ended up with e among other things.There some on this site who similar age group and we could ended up like this happen in our lifetime .i don't say anything anymore unless someone genuinely wants to learn.people get into their heads only 2 types sz on the floor assuming we about bite our tongues off and the petti mal I have said think of finger prints so many different ones and so it is with e..Sadly few more years before taboo is history
 
I come from a family who is more concerned if you have have drug problems;

they seem to be ashamed if you have seizures.I can't control it and I've always had a lot of health problems and I have a husband who is smart as a whip; and they get angry if I don't tell them what's going on in my life.
family they are the pits.:ponder::agree:
 
You're right seagull. Not only family can be idiots to us about seizures, friends (ex-friends) can be also. I remember my first seizure when the marbles in my head stopped rolling around and I was able to focus. I was in the hospital room with another guy and we started talking. I told him what happened to me and he told me not to be embarrassed. I had no idea why he would tell me that until time went on. There are so many people that make fun of us, it's unbelievable! They think we're crazy when we have a seizure. Belinda, don't you let anyone make you feel sad about what we have. :hi5:
I let people know I'm not controllable with meds; but some ppl can make me so angry when they keep asking if I took my medication like I'm a complete idiot. I've been ask how do you live with and I say that's life.
 
Belinda, don't let people bother you. YOU come first when it comes to YOUR health. Me, I'm too old to let stuff like that bother me. I love life, and I'll do what I have to, to make it last.
 
well I got reluctantly visit witch mother who spend day telling me I disgusting only going bc son wants see her otherwise I let her sit in her own hate and venom
 
Family Ignorance Toward Epilepsy

Belinda5000,
It can be very disheartening to a person w/E when they have to keep changing medications! The biggest thing that these people w/E have to understand is that as a person ages the body changes, and therefore the body's requirements to control seizures is going to change with those changes to the body.
It can be very difficult for a person to have to keep weaning off one drug before completely changing to a new medication. But, this is what is necessary to control this condition!
As a person w/E I have dealt with this! I know from having a severe case of depression that it can be hard to deal with. This is something that we, as the people who have to deal with our E, have to learn to take on and conquer. It can be difficult, but the feeling that a person can get when they reach that point can be GREAT! This is because you know that you are the winner, NOT the E!
When a person reaches that point they are showing to people around them, who have seen the difficulties that had to be faced, that they can't be beat, or won't allow something(like E) to beat them down!
You have to develop that type of thinking about the problems that have to be faced during life! Thinking like this can be a life-changer in many cases!

ACsHuman:twocents:
 
i know people tell me things but i dont remember it. One of the downfalls of all the meds. Most kill memory.


I only want to talk about E so much, sometimes ill get more people or too much conversation about it and wont want to conversate. IDK.

Different when everyone wants to help you but you dont want the help.

My wife arranged a family meeting for me and i almost blew up......very badly.
 
Provide Help

gymrat827,
We are more than willing to talk anytime you feel the need to talk! One of the reasons we are here for you is that we, maybe not all, know where you are coming from, and we want to help you, because doing so, is also helpful to us!
There will always be someone to answer questions you may have!

ACsHuman:twocents:
 
I don't have the same issue with rejection or other preception issue with people/family. My wife has a rare lung disease, 85% of one lung functional and 10% of the other one. Her one sister is a nurse and has no sympathy for her. My youngest son has three different mental health diagnosis which can sometimes be very explosive. He is only twelve brings the biggest rejection/stigma issues.

Its extremely difficult if you don't have an understanding empathetic support structure. Both of my parents have passed away with no other family around. My wife's parents are in their 70s and her dad has Parkinsons.

So we have medical stress with little support structure. But I don't have the same issues as you have with your family. Hopefully you have a system of close friends that are supportive, if not you still have people on the CWE to share with.

Gilles
 
acshuman,

Families seem to think they know what you go through because they grew up with you and saw you seize for years and that is so untrue so parents of children with E don't ever think you know what your child is going through unless you seize to.
 
Family

Belind5000,
You are so correct about that!
I know that my in-state Foundation(EFMN)has one day a year when we go to the state capital to speak with our representatives and senators.
The first year that I went, I set up times to meet both men individually. As I was talking to each of them, I asked him who he asked if he needed information about a subject. I asked each of them who they would ask about E. I got the same answer from each one of them! They both said they would ask a specialist, I looked at each one individually and told each one "No, you should be asking the people who have to deal with their problem(E) daily'! Each of them looks at the ceiling, and you could tell that they were thinking. Then each one looked at me and said 'you know, you are right, can I ask to to testify before the House or Senate if I feel you would have a good way of explaining your problems'.
I feel that this opened the guys eyes, and they have passed this on to others that they work with.
I am still in touch with these men. They attend any workshop of Seizure Smart presentation EFMN conducts in their areas!
It is common for people to think this way, but in reality, we(the people w/E) are really the ones who truly know what is is like to live with E in our lives!

ACsHuman:twocents:
 
My mother said to me just yesterday "well we all have good and bad days"...and this time I just couldn't take it anymore and snapped! She has no idea what it is to have a "bad day"!
I understand the frustrations we face and Belinda I think I speak for all of us here, we'll all be here to listen and help!
 
I am so sorry that you are going through so much by yourself , that's not easy for anyone . I hope they change your meds so that they can control your seizures . Pray and ask GOD to Guide you and to give you Peace that only He can give you . I know I did and He DID . Those closest to you sometimes say the dumbest things , you have to not only Forgive them but just overlook it because honestly for them to do that they're doing worse than you and don't even know it , and that's the sad part .
 
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