Do your neighbors know? Is it embarrassing ?

[Janus]

Walking down the quiet streets in my neighborhood last evening around six, yesterday. I had a strong complex Partial. I did not fall down though i became almost dizzy and felt like the earth was wobbling like a circus ride. I am guessing for 20 seconds, or a few minutes. Right afterwards I am always compelled to pray. It is warm and sunny out now so I drop to my knees, put my elbows on the ground and start to pray. Of course there are suddenly other pedestrians walking by "Hey, are you OK?" I reply, "Oh, yes just praying." I wonder what they think. I do not know them well, for example, they do not know I have E. But oh, well. After that kind of experience, I am a bit wiped out and also relaxed. I have never been able to be honest right after. I always say "I'm fine" or "I just had a wicked headache." etc. Even to fam and friends who know about me? I just feel like i can't say seizure happened or Happening"
I called the doc and reported to the nurse what happened and told her "I do NOT want to just increase meds!" Sometimes that makes it worse!" She said she would tell the doc tomorrow what happened. I wish we could all sit for coffee/tea and chat about this stuff. I love ethis site and think the world of you guys.

 

[Rocky Mountain Gemini]

Well I know neighbor immediately across the street knows cuz he saw me fall over on my front patio, not a seizure but I've been totally unbalanced at times from meds, I mean can't walk a straight line at times. Neighbors probably think I'm drunk. So I fall over on my back younger guy comes running over to check on me, very thoughtful of him. Now I am older going on sixty lots of grey hair, so he was genuinely concerned. So I get up explain how I got epilepsy and my meds are messing with me. Other neighbors though might still think I'm just wasted sometimes.It is what it is.And my neurologist is changing my meds, it takes time.

 

[Rocky Mountain Gemini]

And the only thing that is embarrassing is my neighbors might be thinking I'm wasted.But I would never be too embarrassed to share this with anyone. Maybe it's just cuz I'm older and not that concerned what people think anymore. That happens when you get older. LOL

 

[Janus]

RM Gemini, Thank you I loved that. I have had the opposite problem of most people, I don't care what they think at all and it shows; I only wear found clothes and how i dress is usually an 'art piece' in progress. My house is the same. Some call it an eye-sore but others say they love the art house. Since I came into owning I felt that i can do what i want but then the "code-enforcement officer" knows me by name and this is all i have and if they could take it away i became aware of the fact that it matters what they think. Lucky its a liberal town of weird people. My neighbors are stogy, old, straights though. And thanks for the reminder "IT IS WHAT IT IS" and life is good. so All the best.

 

[Fedup]

My neighbors used to know before I moved but there was one who drove me up the wall, I could not go for a walk with out her running over and oh you had a seizure "no I am going for a walk" and then she would go on, come on I will walk you back to the front door and get your parents, I got so angry one day I told her f_ _ _ off, and a bit more but she said it was ok it was the seizure and the meds she did not mind. All I could do was laugh after all the things I call her and telling her to f off.

 

[Cint]

I've had CP's and TC's at home and in public. Several times 911 has been called while having the TC's. Once I had gone status and my daughter was the one who called 911. Before then, I had not told the neighbors, but wished I had. Now I don't hesitate telling neighbors and friends, just in case it happens again. No, it isn't embarrassing. Like Rocky Mountain Gemini said, it is what it is.

 

[Cint]

Plus, it is our obligation to tell the public about epilepsy to free ourselves of the ugly concept of craziness and epilepsy. It is only a brain disorder. Nothing to be ashamed/embarrassed about. It can happen to anyone!

 

[BrandiBrat]

Like Cint I told the neighbors after the ambo was called. Fedup, you crack me up! And Janus I could totally live in a town like that...minus the uptight neighbors. I try to educate as many people as I can about my condition to eradicate the screwed up preconceived notion that it's a mental illness.
Like you Janus, my instinct while coming out of a cp is to say I'm ok (and grab a motrin) but after it's all said and done we need to educate folks to reduce the stigma. And if you weren't two states away I'd definitely meet for coffee or tea and talk about it

 

[C0urt]

several of the first responders are friends of the family and where before i had epilepsy, and i am friends with a 911 dispatcher, I also work for an apartment location service, so we find apartments homes for people, so a surprising number of people in the neighborhood know who i am, and i have grand mals in public, so a lot of people know i have epilepsy. I am ok with my life at this point. there is a semi regular basis, "we saw a lot of flashing lights we thought you go hit by a car or something" it is nice to know my bank cares about me,


the fire fighters wave when they drive by now from the number of times they have peeled me up and probably what was the last hit and run

 

[petero]

I've had ambulances at my house a couple times, once carrying me out on a stretcher which I was embarrassed about. I know I shouldn't be but I'm a very reserved and quiet person, not very social. I don't know what people thought. I think I've mentioned it to my neighbors.

 

[JadedPhoenixBurning]

Not only do our neighbors know but the whole community knows. When he has one in our area nearly everyone knows to call his father. We've had cops come to our house to do accident reports since it is so common around here. No need to worry about being charged with leaving the scene of an accident!

In March my husband decided to go walking and he had a "walking" seizure two miles from the house. Someone whom he hadn't spoken to in a long time saw him and realized what was going on and called my in-laws (I was off with them that day) and let them know that my husband was in the middle of the road. Usually, if my husband is out and about in the area and has one, at least one person in the crowd knows him and what is going on.

Is it embarrassing? I'm sure it is for him even if he doesn't act like it. For me, I'm grateful that so many are aware and willing to help. One person that I'm really glad for is our renter. We own a duplex apartment and live in one side and rent out the other. The renter has a wife who has epilepsy and is very understanding when my husband walks right on in and makes himself at home. He knows that if my husband ever breaks anything that we will replace it. He'll call for me or my mother-in-law to tell us hubby had a seizure since he won't always admit to it.

Hubby is at the hospital that I work security for and he won't admit that he had one today even though security was called for a "combative patient", IE HIM!! LOL!!!

 

[Cherriuz]

Mine know. After a few times with paramedics turning up late at night they were asking if i was okay so i just told them flat out. and aside from that one of them found me with a face covered in blood laying on the front garden with no idea who i was - they are very understanding and always asking how im doing.

 

[MuayThaiFighter]

When I stayed in Omaha with my mom my neighbors were aware that I had epilepsy. They were all good people and if something major happened I think the neighbors would get me to the ER.

Of course if I was even semi aware I would protest to the ER. We all know they can't really do much. I figure as long as I make it to my bedroom, i'll be fine.

 

[CQ:)]

Most of my neighbours know about my epilepsy & they are all really nice.
There is one neigbour in particular I am close to, she is an older lady & like another nanna to me. When my seizures returned in 2002 it was my neighbour who had rung the ambulance as at the time I wasn't making sense, was confused & she stayed at the hospital until my parents were able to get there.

 

[JaneC]

My next-door neighbour's daughter has had seizures so she knows exactly where I'm coming from if I want to talk about it. We've never had an ambulance at the house - my daughter's first TC was at school and she's always come out of them OK when she's had them at home. Anyway, better an ambulance in the street than a police car, seen that a few times.

 

[Dignan]

I had an elderly neighbor who was always calling me for help with things. (she had trouble getting around well). So, I would go over and fix her TV, change light bulbs, things like that..

Once she called when I was wearing electrodes for an ambulatory EEG at home. I debated about whether to go over, but was worried she may have fallen or something, so I went over there with as I was.. Turned out she was okay and just needed something small done for her.

She looked at me like I was a total freak. Kept asking me what was wrong with me.. since she's a pretty big gossip, I didn't bother to tell her, just told her I was having some tests done.

She literally never called me again after that.