I know what it like,i go one better the ppl family live in same road watch me lug daughter around go same supermarket never offered lift watch melug back or pay for cab.
I wont ask ppl have decenties to offer..I rather crawel than ask my family
ppl thinking they're better
- Thread starter Belinda5000
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I know what it like,i go one better the ppl family live in same road watch me lug daughter around go same supermarket never offered lift watch melug back or pay for cab.
I wont ask ppl have decenties to offer..I rather crawel than ask my family
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People who aren't to bright
I had one not so bright of a person ask why I didn't walk some were;I have a bad back and she acted like nothing happened the next day.She knew about my epilepsy and I told her about my back so why do some ppl act like they know it all? She's more 10 years older me tries dying her her hair to look younger it makes her look older and I let my hair hair go gray.
I had one not so bright of a person ask why I didn't walk some were;I have a bad back and she acted like nothing happened the next day.She knew about my epilepsy and I told her about my back so why do some ppl act like they know it all? She's more 10 years older me tries dying her her hair to look younger it makes her look older and I let my hair hair go gray.
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my husband offered to take off work to take me to the neuro and I prefer another office where I can get by bus and train just fine. I don't want him to miss work when I have a better way to get there it's just another office is all I prefer,It's closer to me.
The inability to drive is a major problem. I am married, & have 2 sons, so I feel even worse about not being able to. I can't take them anywhere, and have even had to call a taxi to pick them up from school when they got sick.
I have to ask my husband to get things on his way home. If I have to shop for something, it has to wait until the weekend, & is always done in a rush.
I have to ask my husband to get things on his way home. If I have to shop for something, it has to wait until the weekend, & is always done in a rush.
Just accept if there a God he dice player not sure good one or bad one.i not driven for 30 years so not issue.If could have car back be nice but I not so pointless thinking about it.Those who can drive fair play those that can't move on no good living life bitter about it.These rules apply to diabetic ,vertigo,menairs disease Carple tunnel at its worse broken bones blindness medication make drowsy I expect load more things
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Your never cured you'll always have E; there isn't a cure.
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E hit me hard as a child with I never got diabtes but I got heart disease,asthma,arthritis, just to name a few. SO you can call me a complainer if you like; and I have all kinds of health problems.
JJR1956
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Belinda, don't let people like this bother you. I HAD friends that didn't know what it's like to deal with E, or know what it's like to have a seizure....so they are now, "Former Friends". Some would even make fun of it. I'm too old to have people like this in my life. Don't let them get to you!
BIG HUGZ,
Joey
Ability To Drive
Many of US(people w/E who can't get a DL) let that fact bother them too much. I know from my own experience that when we allow ourselves to think about something that bothers us(NOT being able to drive), the MORE our NOT being able to do that something(in this case being able to drive) bothers us, the worse we feel!
That is why I have made the decision to NOT let that FACT bother me.
NOT thinking about what I could do if I had a DL allows me to keep the amount of stress I feel lower!
Sure, there may be times that I see somebody doing something in a show or movie on TV that I would love to do.The reality is that I may NOT be able do the same thing. I have to accept that fact, and I can feel much better than I would if I were always thinking about 'WHY CAN'T I DO THAT?'. The answer to that question has NOT been found YET, but research is being done, in an attempt to find that answer!:twocents:
ACsHuman
onder:
Many of US(people w/E who can't get a DL) let that fact bother them too much. I know from my own experience that when we allow ourselves to think about something that bothers us(NOT being able to drive), the MORE our NOT being able to do that something(in this case being able to drive) bothers us, the worse we feel!
That is why I have made the decision to NOT let that FACT bother me.
NOT thinking about what I could do if I had a DL allows me to keep the amount of stress I feel lower!
Sure, there may be times that I see somebody doing something in a show or movie on TV that I would love to do.The reality is that I may NOT be able do the same thing. I have to accept that fact, and I can feel much better than I would if I were always thinking about 'WHY CAN'T I DO THAT?'. The answer to that question has NOT been found YET, but research is being done, in an attempt to find that answer!:twocents:
ACsHuman
onder:
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Topcat
Stalwart
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I was a lousy driver anyway. That's why I rear ended an ambulance (of all things) and ended up with a closed head injury and seizures.Many of US(people w/E who can't get a DL) let that fact bother them too much. I know from my own experience that when we allow ourselves to think about something that bothers us(NOT being able to drive), the MORE our NOT being able to do that something(in this case being able to drive) bothers us, the worse we feel!
That is why I have made the decision to NOT let that FACT bother me.
NOT thinking about what I could do if I had a DL allows me to keep the amount of stress I feel lower!
Sure, there may be times that I see somebody doing something in a show or movie on TV that I would love to do.The reality is that I may NOT be able do the same thing. I have to accept that fact, and I can feel much better than I would if I were always thinking about 'WHY CAN'T I DO THAT?'. The answer to that question has NOT been found YET, but research is being done, in an attempt to find that answer!:twocents:
ACsHuman
I made the decision not to drive when I was in school--and in my Driver's Ed class! I still recall the day. It was just before class, & I had my last behind the wheel practice. I had a Simple Partial right before class--I didn't have Complex seizures at the time. That's when I decided not to risk it.:brain:
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I have the right to be bitter and as all of you have said;you can't judge until you have been in that person's shoes. Now for over 52 years years for me it has been now. I wasn't 6 or 4 but 2. I have taken public transportation and have lived in plenty of places were I had know way to get around I had to beg for rides. I lived with my mother way out in Villa rica when it was in middle of no were. I refuse to live where I can't get around either. People are ignorant when they see a seizure even if they have seen one a dozen times before. When I was in High school was the worst time of all my friends where driving and going everywhere but no not me and a lot of people did think i was crazy this was back in the 70's when there 6 drugs out and I was in the hospital 6 months of my senior year and I finished with 5 extra hours to spare. I was seizing like crazy in school only remember it because I came off Dilantin my surgery didn't do anything for me at all so I don't feel anything for anyone that had a life without sz's ; because I didn't and I'd like you to live mine and see if you could live it.
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Belinda,
I'm 48 and have never had a license and it can be frustrating. But, people who have had a license and then all of a sudden start having seizures as an adult and lose their license their world gets turned upside down. Imagine, you have to get your kids to school, extracurricular activities, the pediatrician, go shopping, get to work, etc. etc. and you're used to driving and then all of a sudden you can't drive anymore. Also, a lot of jobs involve having to drive to different places throughout the day. You don't just remain in one location all day. Imagine having a job like that and losing your license. As I said, their world is turned upside down. There are jobs that I would like to have, but I can't b/c you have to be able to drive. I have a Master's degree in Rehab counseling and a lot of counseling jobs involve having to be able to drive. Like I said, it's frustrating. But, I have had to accept it. It doesn't do any good to get frustrated or angry about things we don't have control over. We just have to accept it and find alternatives. I had surgery
last year and have not had a complex partial since the surgery, but I have had auras. The thought of driving is scary. Like I said, I'm 48 and never had a license plus there's no guarantees. I could start having CPs again. I started studying the manual, but
was getting a lot of anxiety so decided not to pursue it at this time. Maybe, I'll change my mind in the future.
I'm 48 and have never had a license and it can be frustrating. But, people who have had a license and then all of a sudden start having seizures as an adult and lose their license their world gets turned upside down. Imagine, you have to get your kids to school, extracurricular activities, the pediatrician, go shopping, get to work, etc. etc. and you're used to driving and then all of a sudden you can't drive anymore. Also, a lot of jobs involve having to drive to different places throughout the day. You don't just remain in one location all day. Imagine having a job like that and losing your license. As I said, their world is turned upside down. There are jobs that I would like to have, but I can't b/c you have to be able to drive. I have a Master's degree in Rehab counseling and a lot of counseling jobs involve having to be able to drive. Like I said, it's frustrating. But, I have had to accept it. It doesn't do any good to get frustrated or angry about things we don't have control over. We just have to accept it and find alternatives. I had surgery
last year and have not had a complex partial since the surgery, but I have had auras. The thought of driving is scary. Like I said, I'm 48 and never had a license plus there's no guarantees. I could start having CPs again. I started studying the manual, but
was getting a lot of anxiety so decided not to pursue it at this time. Maybe, I'll change my mind in the future.
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why don' tyou take my refractory epilepsy you can have it.
I think what also bothers me a lot is that I had just completed my BS w/a double major in economics & info systems about 18 months before my Complex Partial seizures began. Because of that, I have NEVER been able to use my degree. I tried to work twice after my older sons' birth, but had VERY dangerous CPs.
Once, I collapsed outside my office building--I came to at the hospital. Another time, I nearly fell onto the tracks at the train station. I didn't try to work after that.
I often have had seizures within hours of taking my meds, so low blood levels isn't usually the issue for me.
Once, I collapsed outside my office building--I came to at the hospital. Another time, I nearly fell onto the tracks at the train station. I didn't try to work after that.
I often have had seizures within hours of taking my meds, so low blood levels isn't usually the issue for me.
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Belinda,
Mine is refractory, also. I was lucky if I could go a week w/o a seizure and I was on several anti-seizure meds. I just had my left Hippocampus and Amygdala removed last year. My epileptologists had been trying to get me to have surgery for many years and I wouldn't do it. But, then memory problems started from having seizures all those years and kept getting worse. So, seizures were causing what I was afraid of surgery doing. The memory issues plus finding out about laser ablation surgery motivated me to finally have surgery. Surgery made my memory issues worse. I've had thousands of seizures in my life and there were many days when I'd have 20 complex partials in one day and non-stop auras all day long. I've had a couple of tonic-clonics, too. One of the TCs occurred the day I was born. Somehow, I managed to successfully get through undergrad and grad school as a single-mother while having seizures all the time. But, now with the serious memory issues I don't know what I'm capable of doing. I'm thinking of trying some volunteer work and see how that goes.
Mine is refractory, also. I was lucky if I could go a week w/o a seizure and I was on several anti-seizure meds. I just had my left Hippocampus and Amygdala removed last year. My epileptologists had been trying to get me to have surgery for many years and I wouldn't do it. But, then memory problems started from having seizures all those years and kept getting worse. So, seizures were causing what I was afraid of surgery doing. The memory issues plus finding out about laser ablation surgery motivated me to finally have surgery. Surgery made my memory issues worse. I've had thousands of seizures in my life and there were many days when I'd have 20 complex partials in one day and non-stop auras all day long. I've had a couple of tonic-clonics, too. One of the TCs occurred the day I was born. Somehow, I managed to successfully get through undergrad and grad school as a single-mother while having seizures all the time. But, now with the serious memory issues I don't know what I'm capable of doing. I'm thinking of trying some volunteer work and see how that goes.
The memory sends me nearly manic I now got to point not remember to remember if that makes sense so some of manic bits stopped cos forgotten.It is now a disability often dangerous.
The operation made yours worse,I was offered something about 25years back I heartily refused it.Are both of you glad did it or not
The operation made yours worse,I was offered something about 25years back I heartily refused it.Are both of you glad did it or not
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The operation didn't make mine worse at the time they didn't know but my seizures were coming from both sides and I had surgery in 1982 and as I got older my sz's got worse.
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seagull,
My memory issues were pretty bad before surgery, so it was not a big decline after surgery. Some of the memory issues that came from surgery have improved. Also, my neurologist said that as long as I kept having seizures my memory would probably continue to get worse so I figured I might as well have the surgery. Of course, there are other risks with surgery but serious problems like a brain hemorrhage only happen about 1-2% of the time. I did lots of research including asking others who had gone through surgery about their experience before making my decision. I had bad side effects from surgery to deal with, but it was worth it. Having the Amygdala, which controls emotions, removed caused me to feel like I was bipolar and had anxiety disorder for a few months. It was crazy. I felt like my personality changed. But, eventually, I was back to my old self. I'm glad I had the surgery and I have accepted my memory issues. I used to have a great memory so when my memory problems started getting bad a few years before surgery I was scared. But, I'm not scared anymore. I'm used to it now. I do get frustrated at times, though. I do brain exercises almost daily hoping that it may help. I try to have a sense of humor with some of the things that happen b/c of my memory problems. About 5 months after the surgery, I went to get a potato peeler out of the drawer. I was holding the object in my hand and looking right at it and I'm thinking it's a potato peeler. My mother was with me and she said that's a can opener. Instead of getting frustrated or scared, I laughed and said, "That's brain surgery for you." One of my big problems is I can't think of words I want to say when having conversations which is frustrating. I can be looking right at a simple object and unable to think of what it's called. In the middle of a movie, I'll forget what happened earlier in the movie. I have trouble remembering people's names. I'll forget what was said in a conversation a few minutes ago. And the list goes on. I have to write things down a lot these days. But, like I said I had these problems before surgery. I'm just going to move forward and make the best of it and there still may be some improvement. It's only been 9 months since my surgery. My surgeon said it takes up to two years for the brain to heal after surgery. I guess I've reached acceptance.
My memory issues were pretty bad before surgery, so it was not a big decline after surgery. Some of the memory issues that came from surgery have improved. Also, my neurologist said that as long as I kept having seizures my memory would probably continue to get worse so I figured I might as well have the surgery. Of course, there are other risks with surgery but serious problems like a brain hemorrhage only happen about 1-2% of the time. I did lots of research including asking others who had gone through surgery about their experience before making my decision. I had bad side effects from surgery to deal with, but it was worth it. Having the Amygdala, which controls emotions, removed caused me to feel like I was bipolar and had anxiety disorder for a few months. It was crazy. I felt like my personality changed. But, eventually, I was back to my old self. I'm glad I had the surgery and I have accepted my memory issues. I used to have a great memory so when my memory problems started getting bad a few years before surgery I was scared. But, I'm not scared anymore. I'm used to it now. I do get frustrated at times, though. I do brain exercises almost daily hoping that it may help. I try to have a sense of humor with some of the things that happen b/c of my memory problems. About 5 months after the surgery, I went to get a potato peeler out of the drawer. I was holding the object in my hand and looking right at it and I'm thinking it's a potato peeler. My mother was with me and she said that's a can opener. Instead of getting frustrated or scared, I laughed and said, "That's brain surgery for you." One of my big problems is I can't think of words I want to say when having conversations which is frustrating. I can be looking right at a simple object and unable to think of what it's called. In the middle of a movie, I'll forget what happened earlier in the movie. I have trouble remembering people's names. I'll forget what was said in a conversation a few minutes ago. And the list goes on. I have to write things down a lot these days. But, like I said I had these problems before surgery. I'm just going to move forward and make the best of it and there still may be some improvement. It's only been 9 months since my surgery. My surgeon said it takes up to two years for the brain to heal after surgery. I guess I've reached acceptance.