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Just need to talk/rant

Fri, 05/06/2005 - 20:25
Hello. I've been jerking and seizing most of the day and I just need to talk. I tried to write in my journal but it felt like such emptiness writing in something that doesn't have ears. My grandkids were over today and with me having 'problems' my husband kept them with him most of the time. But they did witness my jerking. I remember the first time they saw me having a seizure-it took us forever to get them to quit 'throwing themselves on the floor like Nana.' Which rates right in there with 'my Nana takes her teeth out to brush them-bet yours can't!' It makes me smile to see it written right now but believe me I'm not smiling when it's said. My oldest grandchild will also copy my staring spells and tell me,'you do it', when I fuss at her for it. They both copy what I call my silent talking-I will be moving my mouth like I am talking but no sound is coming out. I don't know how long it goes on before I realize what I'm doing. I always tell them I'm singing quietly to myself. I've never known how to talk about my epilepsy. It was always 'understood' that I have a 'condition' from day one and since it was understood there was no reason to talk about it. All the fear, anger, frustration and total confusion on what was happening to me was buried deep inside of me because that was just how it was done. I've always resented it. Were they afraid I would dwell on it? Use it as a crutch? Run down the street naked, ripping my hair out, at the sheer horror of it? I mean really! Don't get me wrong- I have a very loving family with a mother that feels like anything that goes wrong with her children is somehow her fault. She would absolutely die for me. As much as I would love to talk to her even now, I know it would send her on a huge guilt trip because she would automatically feel it was something she did or didn't do. The woman doesn't cuss, drink or smoke and has always taken very good care of herself. A sure-fire guilt trip all the same. Mommy's tired is what my son heard the first part of his childhood. Poor kid thought everybody's mommies reacted very badly to being tired. When he was ten I finally explained the best I could to him. The look on his face was a total HUH?! It was then that I decided to treat it with humor no matter how far fetched. I never asked him if he was embarrassed of me but I've always wanted to. I don't think he is. If he ever has been, he's never shown it. He told me when he was thirteen that I was fanspaztic. I said, fantastic? He said, " No mama, anybody can be fantastic. It takes a special kind of strength to be fanspastic." That one conversation with a thirteen year old boy has gotten me through so many depressions. Even the ones when I was mad because I would think of him saying it because it would remind me that he did love me and him and anybody else that loved me were getting in the way of me being able to go to sleep and not wake up and I was so tired. It's been years since the last attempt and it's been really hard at times. But when the dark clouds move, I'm always so glad to see that I'm still standing. I drifted-I'm sorry. I better say my point before my brain starts hopscotching around again. Parents of children with epilepsy- please teach them to talk about their epilepsy to you so it doesn't become an understood of condition to them without any venting outlets for them. Epilepsy has never been a crutch-it's been an," oh yes I can!" A total pain in the rectal region but not a crutch. Dwell on it? I'd be lying if I said I never did. After bad seizures I definitely do. For a little while. And I'll hate everyone in the whole wide world. For a little while. Then I hate myself. For a little while. Then I do anything it takes to snap me out of it. I have to. I'm fanspaztic.

Comments

RE: Just need to talk/rant

Submitted by pongosmommy on Sun, 2005-02-27 - 23:57
( note to anyone other than Spiz reading this, Please do not take offense to my comments about teenage girls.)Hi Spiz,I survived my time with the housefull of teenage girls. Talk about a bunch of airheads/Bottomless pits! Holy Cow. Who says girls don't eat? HA. Guard your Cookee Jars ALL!!! They are Cookeeemongers! Bunch of thiefs, Ate all my Oreo's! Every last one. Buncha brats. Think I have issues? OK Atkins Diet? Yeah, I have heard really good things about it. Have I every tried it? Nope I am Fat and Sassy.Does that make me Fassy? Actually I have thought about going on it. I really, really like carbs. I am a carbaholic. Do they have an association? My friend lost a LOT of weight on Atkins, & his wife lost over 100 pounds.How about this we both discuss with MD first then if OK we try it?Effexor isn't really that bad, but it did make me sleepy. I know that I have LOTS of energy without it. Yesterday I mowed the whole front yard all by myself, Now before you laugh at me, I have a BIG front yard, and an even Bigger Back yard. We worked on that today. We haven't been able to work on it because of all the rain. The Grass/Weeds were up to my waist in the back yard. REALLY, My Dogs would Hide from me, and pounce from behind a big clump, scare me. I think the Cat taught them that trick. Cat thinks he is a LION. Catches Pidgeons, Rodents, anything else that moves.Give Grandbaby a squeeze for me.

RE: RE: Just need to talk/rant

Submitted by spiz on Mon, 2005-02-28 - 13:15
Hello! Ok Fassy, I'm fat and fluffy so I get to be Faluffy. You know something....with names like that we could be from the same planet my refriginator's from. With this name change, I sure hope it doesn't feel the need to bond with me again. Speaking of which, my appt. is at 2:45 today. I have an absolute ton of questions written down to ask him and I just know he's gonna love me for it. Yes, he's gonna get that cute little, "ohhh noooo" look in his eyes but I just know he does that on purpose to throw me off on how happy he is that I'm being responsible and wanting to stay on top of everything. Seriously though, I never have in the past. I could never talk about it willingly, even to my neuro-psychologist. He told me one time to say,"I am epileptic",and I hated him for it. I told him I already knew I was-I didn't need to say it. I don't know if I thought by not saying it I could convince myself I just had an extremely serious case of muscle spasms or what but I really fought saying those words out loud. Those words were only suppose to be 'known' or 'understood to be' or 'thought'. Never said out loud. It took me the longest time to be able to say those words. I went from saying those words and feeling totally ashamed to saying," I am epileptic", and feeling 'that's just the way it is!' That helped me with some of the anger right there. Oops-gotta go get ready! Talk at you later! -Spiz

RE: RE: RE: Just need to talk/rant

Submitted by thegraduate on Mon, 2005-02-28 - 14:46

New guy here. Name is Mike. I've had epilepsy since the age of 13. I've kept it under control pretty well. Only things that still bother me are the massive headaches. Learning to cope with those too. Doing ok. Need to talk to others that are going through the same things I am going through. I'm generally a happy guy. Takes alot to get me down. It's a definite pleasure to see others like or similar to me. I don't do message boards well, I'm still learning.

New guy here. Name is Mike. I've had epilepsy since the age of 13. I've kept it under control pretty well. Only things that still bother me are the massive headaches. Learning to cope with those too. Doing ok. Need to talk to others that are going through the same things I am going through. I'm generally a happy guy. Takes alot to get me down. It's a definite pleasure to see others like or similar to me. I don't do message boards well, I'm still learning.

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