How do you feel, what do you think?

[Matthew74]

I hope this is a little more positive and useful. I start from my perspective, but I think others might relate in their own way. Carpentergirl said something about not letting E or the thought of it run your life. I thought it was awesome, and it reminded me of how I felt and thought as recently as 10 years ago. I miss that guy, and wish he would come back. My E is a lot harder to ignore now, but I have changed. 10 years ago, shortly after I started having constant partials, someone told me that I felt inferior because of my E. I was so confident they were dead wrong, I wasn't even offended. I told them straight up they were wrong. Now I'm not so sure. Obviously no one is inferior because of E, or any other medical condition or disability, no matter how severe. I beleve this with all my heart. However, I admit I feel inferior for a lot of reasons caused by E, from not driving, to forgetting my jacket in the taxi cab, to more important stuff. I don't know whether it was the suggestion that I felt inferior that buried itself in my conscience, or all the disasters of the last 15 years, but there is no doubt E plays a central role in my thoughts and identity, a place that it did not occupy when I was younger. Does anyone relate, or have any thoughts about the matter?

 

[BIGMAN131307]

IMO, E doesn't run my life. It has directed and shaped it a lot. That in itself has effected how my path has changed a lot. Because of E I wasn't able to play on sports teams in school. I wasn't much of run with the crowd kind of guy. E medications has caused me other medical problems. Having E also has prevented me from having a "true" college experience.

But the flip side to all that is E helped me in other ways. I've seen others get hurt bad playing schools in school. Which I fortunately didn't suffer. Some friends got into trouble, which I also avoided not being the crowd guy. Being close to home going to a local college, kept me focused more on my classes.

Now that my E is getting controlled, I should be able to begin to control my path more.
Being more school, work training, driving, etc. It took time, but I finally get to steer my life.

 

[Ruth]

E does run my life to a certain degree. Doctors, tests etc. My Parkinson's is worse though. I let it run my life for quite a while. Big mistake!! I started feeling sorry for myself.

I am back to thinking Positive!! I am on the right track now.

When I was going through school, I did not miss out on being popular. I felt that if they did not want to be friends with me, that was all right.

I am not letting E or Parkinson's run my life anymore. I have better things to do.

 

[Mr.21T]

It definitely runs my life, not really in a bad way either.

I was in denial during my early HS and college years, but E had a serious effect on my life. Even though I was an all-county athlete I couldn't stay over with the team without having serious seizures in the bathroom 1st thing next morning. Kepprage got me into a fight once every fall, and I shunned help by feigning sleep during EEGs so I could drive a car for the first time my senior year.

I had to go to a community college my first two years...had to turn down partial offers to Division II schools because of e. I couldn't ever stay in dorms during my college career. I had a real superiority complex back then. I knew there was a lot that I couldn't do, so when I could do stuff like go to prom, date, socialize, make friends, haze freshmen, I didn't like it was my last chance to. I was a bit of an ass then, looking back.

Now that I'm more in touch with reality, the feelings of inferiority are harder to ignore because I face them every day. My ex girlfriend of two years left me when my seizures and behavior started to have a negative effect on her social life, and many of my other friends have moved onto greener pastures because...well, they can.

One positive thing about e is that it forces me to do what's best for me, which sucks sometimes, but is for the best. I graduated school, earned 3 professional licenses, and worked 60 hours a week that summer, but the hardest thing I did in 2014 was quit alcohol. The seizures I went through during withdrawal were awful, but instead of a bottle of wine or fifth of crown I'm drinking coconut water every night.

Life is progress. I read somewhere that the best thing to do is just try to make it 1% better each day.

 

[Carpentergirl]

I wasn't diagnosed till I was 26 after having my daughter, and I can still remember throwing an absolute tantrum in the doctor's office threatening the resident doctor when he wrote down epilepsy on my chart that I didn't want that written on my medical history etc...I was so uneducated at the time about it all, and of course they were just so easy going about it all like its just an every day thing...and I was embarrassed by it at the time to the point that I wouldn't even admit that I had a problem...I would even try to skip my medicine to try to prove to myself that those siezures were just a one time thing...I can even remember my friend mentioning me in a comment on facebook during E awareness month and wearing purple for all the people that were dear to her and mentioning my name and I was pissed off cause I didn't want my name out there etc....I went from trying to shove it in the corner and ignoring it hoping like hell it would go away to now making damn sure I give it the stern attention that it needs and always letting it know that just because I'm not talking about E all the time and thinking about it 24/7 I'm still in charge..i treat my E like a second entity inside of me...a quiet little being..because I know that it's just lurking there waiting to show it's ugly head eventually...so I keep my head strong and always have that attitude that it's not going to run my life...ever...no matter what...I'm realistic of course and know that I will have a seizure eventually, but that doesn't mean that I have to sit around in my own misery and worry and wait for it...bring it on....I've been through it before...and I'll get through it again...

 

[Garbo]

I certainly get frustrated with it-- I've taken so many medications and they will work for a short period of time and then I will become immune to them after about six to nine months-- but no, I don't let epilepsy run my life (hell, why do so many people call it "E?"). I ride horses, I travel a lot, I have a MA (I have two BAs), about to take a year off to go to Columbia U to obtain a MS, and then finish up my PhD. In fact, epilepsy is what has made me such an excellent grad student because I plan out my days so well!

 

[seizuregirl]

It does run my life! I can't drive, handle my own money anymore, go shopping by myself, or have a job.

It's frustrating, stressful, and depressing. I look back not even 5yrs ago, and I had a good job, I didn't drive because of epilepsy, but I was able to hitch rides to and from work with my sister's and other family members.

And because of not working, I have now I become a built-in daycare provider for my sisters' so they can save money by not having their kids in an actual daycare and pay every month. I never wanted to deal with kids, and yet, here I am, dealing with them Mon-Fri, and on some weekends when they have "important" things to do.

I try hard to remind myself, when waking up in the mornings to watch the kids that I'm helping my sisters save money, and when our Father dies, 1 of them will be have to take care of me since SS has deemed me unable to do that myself because of the seizure's and my memory, so one of them will have to become my care-giver, and with my helping them with their kids now, I am, in a way i guess, am paying them back early with watching them so much.

That will help from time to time to get me out of bed, until the kids show up and one or both are throwing fits from h*ll because they don't want to be here or they don't want their mom or dad to leave. And to get them to calm down after they leave is, many times, almost impossible.

I've been trying to do yoga but I find that I'm just too tired and unmotivated when I have the time to do any of it.

 

[Bidwell]

I like Carpentergirl's idea of thinking of e as a second entity in her -- I think I must be doing that too without quite knowing it -- when I am on top of it, that is.

 

[Ruth]

why do so many people call it "E?". I ride horses

That is a good question. We call it E so we don't have to write out epilepsy.

I use to ride horses when we lived in the country. When we moved to the city, we had no place to keep a horse.

I use to go swimming. Now, E has taken that away from me. I have started having seizures in the swimming pool. So E is running my life to more of a degree than before.

I am fighting it though!!

 

[valeriedl]

The only way that I feel that epilepsy runs my life is because I can't drive. I hate not being able to just jump in the car and go to the store and get a gallon of milk, I have to wait until my husband gets home or if someone can take me. I'm not able to get together with my friends as much, most of them live about a half hour away. It's not that fun if my husband has to drive me to their place so I can spend the day with them and since my friends work, which I don't, it's really hard to get together.

My memory is horrible but I usually laugh about it. A good many times I'll ask or tell someone the same thing over and over and they say "You know you've told/asked me this about 10 times now" and then start laughing.

The biggest thing was it actually took me about 3 years to remember that president Regan had died. My husband would get so mad because I was always saying "Regan's dead! When did that happen?" He thought I was joking and playing a gag on him but after about the 20th time I asked he realized I was serious.

One thing that my family gets mad (if you want put it that way) are about the things that I actually do remember. My husband hates it that I just can't forget about the time he thought he saw a UFO.

I can even remember my friend mentioning me in a comment on facebook during E awareness month and wearing purple for all the people that were dear to her and mentioning my name and I was pissed off cause I didn't want my name out there etc..

I'm not embarrassed that I have epilepsy and don't mind telling people at all but I want them to hear it from me or my family. I wouldn't want people to find out over the internet. That's almost as though you were wearing a sticker on your forehead that says 'I have epilepsy' so the whole world knows all the time.

A good bit of times when someone finds out that I have epilepsy in some stupid way I get "Oh I'm so sorry to hear that". There's nothing to be sorry about. I can function normally, I'm still a human being. It's not like I'm having seizures 24/7.

 

[seizuregirl]

Another thing that is frustrating about having epilepsy is when I meet someone that's nice and friendly and I seem to be getting along with them, but when I tell them that I have epilepsy, they get a stunned/scared look on their face as if I'm going to drop to the ground and start convulsing any second!

And there's no point in telling them that not every seizure is a tonic clonic, and that there are many other types of seizures that someone could have, but it seems that it's the only kind that someone with epilepsy should have.

 

[Bidwell]

As my mother used to say [on other subjects] " Maybe you don't want those people as friends anyway." At least you know who is creepy and it isn't you.

 

[Ruth]

As my mother used to say [on other subjects] " Maybe you don't want those people as friends anyway."

I had the same problems when I was in High School. I felt that they were not real friends. They were just pretending to be friends.

I still educated them about epilepsy in case they did not know anything about it. From the time I was 6 years old, I explained to people what epilepsy was all about.

 

[valeriedl]

Another thing that is frustrating about having epilepsy is when I meet someone that's nice and friendly and I seem to be getting along with them, but when I tell them that I have epilepsy, they get a stunned/scared look on their face as if I'm going to drop to the ground and start convulsing any second!

And there's no point in telling them that not every seizure is a tonic clonic, and that there are many other types of seizures that someone could have, but it seems that it's the only kind that someone with epilepsy should have.

I get this all the time because from just about everyone. Unless they know someone with epilepsy, thinks that a 'seizure' is a tonic clonic. When I tell the people what type of seizures I have (usually only partials) they are stunned and have no clue what I mean. 'You just sit there and stare????? You don't shake????'. The people who know someone with epilepsy might say to me "That's the type of seizures that my family member/friend has too".

As you said they may even get a scared look on their face and take a few steps back from me as though they think that they might catch epilepsy or that I am going to fall to the floor and start shaking like crazy any second.

 

[BIGMAN131307]

You just sit there and stare????? You don't shake????'.

It's even worse when you get this reaction from an EMU nurse.

If you don't have a tonic clonic, they don't know what to do. They should be trained in may kinds of seizures.

 

[valeriedl]

It's even worse when you get this reaction from an EMU nurse.

If you don't have a tonic clonic, they don't know what to do. They should be trained in may kinds of seizures.

Now that's just.... Ridiculous isn't even close to being the right word. I don't know what that is???? :dontknow:

 

[Bidwell]

You do have to wonder why that kind of thing could happen. Sounds like somebody above the nurse isn't taking care of business [to train the nurse]. Part of the health care crisis? Wow.

 

[Dignan]

Well, I know I've felt like I've had to "train" multiple doctors, so it doesn't surprise me that nurses need it too!

 

[Mr.21T]

It's even worse when you get this reaction from an EMU nurse.

If you don't have a tonic clonic, they don't know what to do. They should be trained in may kinds of seizures.

If you don't mind me asking, what ARE they supposed to do in cases of other seizures?

 

[Bidwell]

On an individual basis, you have to think that EMU nurses who don't know what they are dealing with are dangerous -- whether they DO something or not.