ppl thinking they're better

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Belinda5000

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I get the impression that ppl with E seem to think there better because there controlled and they'll never have a problem with there seizures.
Well excuse me for living ! I've been to hell and back and I guess I can't offer anything because It's basicall4 54 years of living is all I have and most of it it is with E.
 
Better as in no seizures or better as in better than others with E who are not controlled?
I have met some of the former, but none of the latter.

I would imagine that the " I am all better from my E because I am controlled" idea is a bit delusional as far as an "I am cured" concept, but maybe that "delusional" thought process helps to keep stress low by removing the constant fear of the next seizure, reducing anxiety and depression and thereby helping keep seizures controlled.
 
I doubt anyone thinks that they remained each time take icrecably strong meds which no one wants.
I think you making rather sweeping statement
 
As someone whose seizures are currently controlled by meds, I definitely I do not think I am better than anyone else, and I hope I haven't given that impression. Belinda, I very much respect your advice and your opnions, and I hope you continue to offer them.

I've learned a ton here at CWE, and I continue to learn stuff every day. I'm inspired by everyone here who is struggling in one way or another.
 
Belinds5000

No one should ever say something to make it seem that they think more of themselves! IMO If anyone has done that, report the post or message.
Having feelings of frustrations is the last thing that a person w/E wants to have!
This type of feeling may lead to a person getting 'stressed out', and that(being stressed out) can lead to a rise in the number of seizures a person may have. A person w/E wants to keep their stress levels as low as they can possibly get them, if only to attempt to lower their possibility of having a seizure!:twocents:

ACsHuman
 
Oh Belinda, I hope you don't think that of me because I say I hike and am under control. Please don't. I'm so happy to be able to do things like hiking. I love this forum and all the people on it. I just want to share my pictures and videos with all of you. I'm no better then the next person here. I love all of you...I really do.
 
BelindA I don't think you thought that though nak was very polite to you i had controll my typing keeping because it would not been polite

there people on here do not have e but nearest and dearest do and can be lot worse for them some have Lennox e and parent who looks after child with that know one day the out come
Are you saying this should be site for people who not controlled seems counter productive I for one very I trested as to why some things happen other don't at it reading others that give me clues.i for one very pleased if meds and surgery work for them so don't try make them feel bad cos I assure e is not far from there thoughts
 
I do not think Belinda meant it the way it was taken up especially towards Nakamova who could never be accused of this but I do understand what is meant and yes in ways I can agree. It was never suggested or hinted that this site should be for people who have uncontrolled E, that would be just wrong, it has nothing to do with making anybody feel bad it has to do with the fact that "an impression can be given by some people"

This place is a home for all of us, where we learn, ask questions, even meet people and share our stories and experiences and when needed use the padded room. I do not believe anybody here goes out of there way to upset others, we must always think of others, first impressions can be the wrong impressions.
 
There are some ppl who don't think when they talk about how they lose there freedom from driving whoopee I've never driven and so have have there been many others on this board. I'd like to see you get around as I do those of you who drive take the bus /train and see how fun it is. And see if you would go out after you started seizing again while you were driving.
 
Joey,

I meant ppl who have basically said they couldn't make it without a car.
I didn't mean ppl who are undercontrol ppl who won't stop driving when there seizing and keep on trucking. I've never been there and I've been told I don't know what it's like. I'm not an idiot.
 
When I had that first grand mal as an adult and lost driving privileges for 3 months I was devastated and very concerned about how to keep my job still support my family. It was the collapse of my world at that time and if I had found CWE at that point I would have been ranting at not being able to drive because to me that was (still is) an integral part of my world.
3 grand mals later I am now have seizures under control with medication and sleep. We have the back up plan for driving which is pretty much find a new job that I can get to without 4+ hours on a bus per day.
Am I better than anyone....hell no. My version of E is different and allows me to more freedom but I still have daily hurdles. I might vent about my struggles but in no way is that intended to make me feel superior and in many cases others are the same. But their struggles are theirs and yes they do come off with that better than you bull**** attitude at times. Hard to say who really feels that way but it can frustrate everyone and it is way worse when it is done in your face.

I don't feel sorry but I understand the best I can Belinda5000 and am here for you the best I can be.
 
Knothing,
I'm glad your controlled I'm not controllable and I've had surgery and I'm med resistant and I'm allergic and there are still though who try tell me I haven't tried enough. After like 23 drugs in 50 odd years and I had the VNS it worked for a few years.I have lousy insurance.

My husband surgery worked in 1972.
 
Belinda5000 said:
Joey,

I meant ppl who have basically said they couldn't make it without a car.
I didn't mean ppl who are undercontrol ppl who won't stop driving when there seizing and keep on trucking. I've never been there and I've been told I don't know what it's like. I'm not an idiot.
Click to expand...
Belinda, Thank you for this post. I have so much respect for everyone on this board and in no way think I’m better than the next person here. My story is just different. I was worried you meant me because I am under control….for now. But that doesn’t mean forever. I wasn’t born with E. I started a career with being a tractor trailer driver right out of High School. That was in 1974. It was a great Teamster job with excellent pay and benefits. One day driving my car to go to the yard where my trailer was parked for my morning run, a drunk driver slammed into me and almost killed me. That’s when my life with E began, (January 25th, 2000). I had so many broken bones and a really damaged c-spine. I got E from the c-spine damage the docs finally figured out. At first they though I hit my head. I did have my seatbelt on, but I don’t remember hitting my head. They told me there are nerves in the c-spine that carry chemicals to the brain. Some of those nerves are blocked….they still are. So that’s what started my journey with E. I had 2 grand mals within a few months’ time. I lost my CDL truck drivers license for good. Plus I wasn’t allowed to drive for 1 ½ years. I was put on Dilantin and the GM’s stopped. After the 1 ½ years, I finally got my license back…but only to drive a car. My career as a truck driver came to an end. After about 5 years on Dilantin, I noticed I was having these weird blanks in memory….along with other issues. (I lost my license for a year this time) I was then put on Pheno. That worked excellent, and I’ve had no activity since…BUT, my Nero told me that doesn’t mean I won’t ever have them again. So as long as I’m feeling good, I’m going to take life and get all I can out of it until that next seizure pops up….and it will I was told. (I do get a day’s notice before I get one. I’ll never forget that feeling)

So that’s my story with E. Not as bad as many on this board. But I know what it’s like, and I have so much respect and love for all that are worse then me.

Love & Hugs To Everyone here!
:hugs:
 
Hi Belinda,

I only know what it's like being able to drive - I've been doing it for 30 yrs. Being able to get in the car anytime and being able to go anywhere I want, whenever I want is what I'm used to. Having that abruptly taken away would indeed be devastating. Learning to rely on public transport or asking for rides is something that would take gettng used to. Can it be done? Sure it can. But I'm not going to be happy about it until I accept the fact that I can't do it anymore. And acceptance takes longer for some.

Some don't know what it feels like to not drive. Some don't know what it feels like to drive. There is no right or wrong here. It's just what you're used to.

Regardless, people who drive are no better than anyone else. Im sorry someone has made you feel that way. :(.
 
would any of you like to have to constantly try to ask some for a ride when it is out of there way?When you live 5 minutes away from were going and they say your an can't bring you and u tell them for upptenth time how he leaves for work real early.
 
Dealing With People You Ask For Rides

When it comes to people who should be able to give you a ride, but refuse to help you out, you have to keep trying.
I thought I had been turned into a hermit when my dad died. I could NOT think of anybody to call to ask for a ride. Suddenly one day I got a knock on my front door and when I answered the door, there stood a total stranger. He asked if he could come inside and talk with me after he had introduced himself, and told me why he was at my house.
He had been talking with some people at his church and one of them mentioned knowing a person who had E. This person(I didn't know them) went on about how this person had no way of getting around because they didn't drive. Well, This man who heard about the person who had E decided that he needed to speak with that person, who had E. The rest is history! I was that person w/E. The man, Ken, is now one of my best friends, along with his wife. We both know that each of us will always be willing and able to help each other do something.
Ken, when he was talking to me in my house, simply said 'I hear you are having some problems getting around to do things!'. He then told me that he was there to help me solve that problem. Ken and his wife started giving me rides when I needed them, and they told other retired people in their church about me, I now have a list of people who I can call if I need a ride, and they are more than happy to be helping me.
I think checking into local churches could possibly find a person some willing people to give a person rides, if they need them.
Sometimes, until a person reaches out and asks for help, people don't realize that they can provide help. Asking for help is something that can be very difficult for some people, but if they don't ask for help nobody will know that they need help!:ponder:

ACsHuman
 
I am fortunate that the bus system where I live is pretty good. I have a sister who is wonderful and gives me rides enough to do basic shopping.
Because my seizures are in no way shape or form controlled I'm on disability so don't need to go out much. When I do I usually walk if it's not far. I've gotten to be well acquainted with the fire fire fighters. They double as paramedics here and have picked me up (after I seize and collapse) by the side of the road many times.
 
We have no buses, no trains, no rickshaws, no free pink bicycles to ride, no public transportation at all. There are no side walks and most roads do not even have a shoulder to walk on.

Nearest convenience store is a 6 mile walk, nearest "city" with drug store, super markets and other shopping is a 30 mile walk. For a person with physical injuries that prevents walking for miles, if you cannot drive or arrange for someone to give you a ride, you do not go.

If I could not arrange a ride for my monthly DR appointment I would have to live at the DR's office since it would take me more than a month to walk the 90+ miles there and back.

When my seizures are controlled I am able to drive, so if I get a good bottle of med's I get 90 days of freedom, if I get a bad bottle then its 6 months off the road and since 2011 I have gotten more bad bottles than good.

Before my back injury I was a commercial truck driver 10 hours a day, 6 days a week, every where I went with my friends I was always the driver, everyone would toss me their keys and say "catch, you drive".

Even when my seizures are controlled I rarely drive now, heck most weeks I do not even go outside of the house.

This is just the way it is for me and oddly it does not bother me. I do not begrudge anyone for their ability to drive or travel or for enjoying going outside.

Does anyone know a lab that can test medicine?
 
Advantages of NOT Driving

I have to say that if I could drive and had a car the costs of everything needed would make living on my disability check 'very difficult'. I figure I save by not owning a car, paying for maintenance on the car, insurance, gas and any other things needed when owning a car.
I figure that I save over $600 a month. I can take a taxi many times for that amount.
I am lucky in that both my local grocery store and pharmacy deliver for free. This helps out a lot! IMO

ACsHuman
 
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