Very very mad

[nana1]

[ god i wish people who don`t have epilepsy could understand what our life is like. I had a seizure last thursday (end of july), i have given people information on what to do if a person had a seizre and what not to do. Well this people where stupid to say the least. After i got back from er and being in hospital for couple days, these people decided amoung themselve i had to be babysat, they could not leave me alone at the church office to answer phone. When one of them go on vacation they ask me to fill in for them ( which means i am alon) .but because of this seizure now i can`t do that. I can`t go out of room without someone following me ( what am i a baby or something). I am in my 50`s and live by myself and when i have a seizure i am all byself, all i do is crawl into bed or just lay were i am till i can get my barrens back. Fu.. People can be stupid if they don`t read and listen to you. What was the firg. Sense in me getting the information for them about epilepsy and what to do and what not to do, and what to expect to happen. If they do not read it and treat me like a peice of shi. I have almost gone as far as leaving this church, but as i am a member and not all the people did this to me i will not do that. I am in the choir there and i can not see leaving them, i have had 3 seizures in front of choir and they do not treat me any diffenert, i am the sane person as i was before the seizure. I think i better stop gripping for now.

Nancy

[RobinN]

The same has happened to Rebecca, and it is frustrating her as well.
She does teach those that she feels are close to her and will listen. I teach the adults around her. But even then as you say they have difficulty wrapping their mind around it.
I suggest (what I have found to work), continue to be as clear as possible to your needs and wishes. Say it in as many different ways as you can. Consider their ability to learn and their listening skills might be lacking. I doubt I would have understood if I hadn't done so much research on the subject.

[nana1]

Robin these people are adults. They have now people who have epilepsy, so the information i gave them was like a refresher course for them. These people are older then me. I have gone out and got books on subject and got information from this epilepsy forum and other forums. I also went to neurologist docyors and got information. I have been doing this for YEARS. So it is not like they don`t have the information, and they now what seizures are. There are other people in church who have seizures also, and they treat them this way also. It just not fair to treat us like shi. just cause we have epilepsy, we can not do anything about our Epilepsy.

nancy

[RobinN]

It just not fair to treat us like shi. just cause we have epilepsy, we can not do anything about our Epilepsy.

That I am in full agreement with.

However, even the nurse at Rebecca's school only has a text book knowledge of the disorder and the individual needs and manifestations are misunderstood. I am sure it would be frustrating to me as well if I had to repeat myself over and over again.
You have certainly done your part to teach. Now I guess you can only pray that they will comprehend.

[nana1]

Thank you Robin. Guess i got to calm down some. been 4 days that i have been steamed and holding it in, just could not hold it in any longer.
nancy

[RobinN]

Very glad you let it out.
When I was at my lowest, I had not discovered CWE and I almost put my fist through the wall.
However, I was clear headed enough to realize that I would have to see a doctor for that, and that was the last place I wanted to be, so I stomped my feet instead.

[nana1]

I am glad i found CWE so i could have a place to vent and not throw my computer across the room or hit my tv with shoe.

nancy

[Wally]

Very glad you let it out.
When I was at my lowest, I had not discovered CWE and I almost put my fist through the wall.
However, I was clear headed enough to realize that I would have to see a doctor for that, and that was the last place I wanted to be, so I stomped my feet instead.

This is the place to let it out! This site is a great resource! It is a great place to discuss our unique problems with others that can relate. Here in the real world, I only know two people that have E. But on this site there are lots of folks!

[Birdbomb]

You can treat epilepsy but you can't fix stupid.

[RobinN]

Before June 2006 I knew no one that had seizures, or at least let me know that they did.
I was quite ignorant about the subject. However, it has been the one issue in my life that has made me seriously want to hurt people. I just realized that my energy was not useful in that direction. I could only help my daughter with positive energy and thoughts. So I made a firm commitment to myself that I would never fight anyone on the subject, only about her rights. Even that must be done in a loving manner, or it defeats the purpose. I have been heard far more when I ask for guidance and a positive path.

[nana1]

birdbomb thank you so much for hug, i really needed that tonight (excuse this morning-it 12:55am here. best get myself to bed)



Nancy

[Cint]

Nancy,

I am so sorry to hear of your seizure and the way people treated you. I, too, live by myself now and people have treated my that way at times when they learn I've had a seizure. I am still an adult human being! Don't you sometimes wish they could be put in our situation and have everyone staring at them for once and treat them as two year olds?!

(((HUGS)))) to you, Nancy!!


Cindy

[Bernard]

{{{Nancy}}}

[brain]

Sending you lots of hugs your way!

[BuckeyeFan]

So glad you were able to come here and vent Nancy! It is a great place to let go of that pent up emotion.

I have been lucky enough to never need to fight that type of issue too much, though I do not know what is said behind my back.

Rant away dear Lady!!!

[Meetz1064]

Sorry you're dealing with a bunch of nincompoopskis, Nancy.

Think of it this way: They've got a bunch of air between their ears.....and they most certainly don't know what they're talking about, so they don't know how to be decent.

(HUGS)

Meetz

[Nancy]

Nancy -- I know what you're saying -- I understand it completely

Another Nancy

[nana1]

I actually went to the main person at church and asked her what kind of a christian pastor are you? I was still very bull today. I did go to church but the man who plays organ and another member of choir came and picked me up and we went to church, but first they wanted me to calm down some. They asked if i would sing with them today, as they new that calms me down ( i also in choir), Then we all talked about how i felt and what i wanted to do.They both have seen me have seizures and understand them and not afraid of them or me.
Nancy

[RobinN]

Good for you!

[skillefer]

Hi Nancy! Just got back from a busy last couple of days. I'm so sorry to hear what happened at your church! But, I think it was a good idea to have a talk with the pastor. I'm hoping that went calmly... But even if not, the pastor needs to set the mood of the office, acknowledge any discrimination that may be happening in their flock,and work to rectify it.