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New and just finding out I have epilepsy
Tue, 12/13/2005 - 14:44Topic: Women With Epilepsy
Hi,
My name is Alissa. I'm 26 and have a five year old little girl. I live in Memphis.
I had grown up with seizures since I was 3 or 4 years old, but I was never told what causes them or how to handle them. I was always told I would over grow them, which I thought I had. I didn't have a seizures for five years, then when I was pragant with my daughter I had one. I hadn't had one until about a month ago.
I was scared because I was having them back to back for several days. I finaaly went to the hospital, which my husband made me go. I had hoped them would of gone away again, but now that they haven't I'm scared even more than before.
The day that my husband took me to the hospital, we were taking my daughter to school and she saw me having back to back in the car. I wasn't driving. She had to stay with my family for awhile, but when I got out she wouldn't talk or come around me for awhile. I finally sat down with her and asked what was wrong. She told me that she was scared that I was going to die. She and I talked about what had happen to me and that I'm going to fine now. I know that she's still scared because I'm scared myself.
I'm trying to deal with it all, but I don't know what I can do to help me heal the pain I have inside and how to help the pain I'm causing my husband and daughter. I don't talk to my husband about anything that I'm feeling or thinking any more. I keep everything to myself and it's starting to cause problems in our relationship.
I don't know how to let him know what I'm feeling or thinking. I'm scared that if I do, he won't understand and then tell me it's over because he can't handle it.
What do I need to do?
Comments
Re: Re: Re: Re: Re: New and just finding out I have epilepsy
Submitted by HubbyHerb on Wed, 2005-12-14 - 20:19
Wow. That was vague. Here are some examples:
1. "I'm really sore. Can I have a massage later?"
2. "I'm lonely stuck in the house with the kids. Can we wait and have dinner later after the kids are asleep?"
3. "People seem to have a problem with my epilepsy. Who's problem do you think that is?"
4. "Thanks for doing the dishes. It seems like I feel tired all the the time. I appreciate your help."
He will know you're feeling sore, lonely, rejected and tired, he can give his opinion, there's something he can do about it, and you will appreciate it. You'll have to fit this approach to the things you are having a problem with. I'm basing this on my wife's situation.
Re: Re: Re: Re: Re: New and just finding out I have epilepsy
Submitted by Mari_WA on Wed, 2005-12-14 - 20:41
I can relate to the low blood sugar (hypoglycemia). Nine years ago, one of my doctors decided that since all of my EEG's had always been normal, but I always seemed to seek food or drink, I did not, nor did I ever have, epilepsy. For nine YEARS, I was unknowingly playing with fire. I saw a neurologist on 9/31, and I was told that yes, I did have, and always have had, epilepsy. Talk about anger at doctors? I was ready to sue. Fortunately for both of us, I was long past the statue of limitations. Within six weeks of being put back on AED's, I was okay again, with one small exception recently. I wish that some doctors were better educated and didn't practice outside their field of expertise.
Alissa, don't block your husband out. When I was first diagnosed (in 1973), I did that as a self-preservation act, because I was a junior high student. When I was re-diagnosed not that long ago, I almost did the same thing. But my husband reminded me that I had epilepsy when we got married, and he took the "for better, for worse; in sickness and in health" vows VERY seriously. Remember, your hubby's on your side.
Re: Re: Re: Re: New and just finding out I have epilepsy
Submitted by HubbyHerb on Wed, 2005-12-14 - 19:51
Hi, Allisa. I've got a story for you. My wife has had four seizures since August, has almost constant headaches, vertigo, soreness, tiredness, etc. Her previously active life seems over to her, and she is pretty much confined to our house. Last night, on House (my favorite show), seizures were caused by insulin injections. My wife asked me what was up with that. I wondered if low blood sugar was a contributing factor to epileptic seizures, and got on the wwweb. The answer was clear. Low blood sugar triggers seizures in many people with epilepsy. I found that many people have learned to control their seizures by controlling what they eat and when they eat it. People have discovered other adjustments in their lives that have reduced the number of seizures they experience. Many people have eliminated their seizures entirely, and some manage to get by without medication. Maybe the doctors have told you this, but our doctors didn't. They simply said that even after an examination, CAT scan, MRI and blood tests, they didn't know what caused the seizures. They said it didn't matter because they'd ruled out everything that they could fix, and the treatment for all the other causes would be the same -- anti-seizure medication. What I found out is great cause for hope that my wife's burden will be lighter in the future. But I was mad at our doctors. Really mad. Not "stick long steel needles in their eyes" mad, but betrayed and ignored mad. I was frustrated. I realized that I hadn't done all I could for my wife. My wife picked up on this, like she always does, and said "It's because I asked about the insulin, right?" My anger scared her. I wasn't angry at her, but she put it on herself. Men are different than women. If the roles were reversed, I would have been angry at the doctors too. So put yourself in your husband's shoes for a minute. Don't walk around much, or you'll trip and fall over. Your husband's wife has a problem, and he wants to fix it. That's what guys do. You already know this. You tell him your problems, and he starts telling you how to fix them, when what you really need is a hug. But he doesn't know how to fix this problem, and it pains him. Probably lots. He gets home from work, and asks you how you're doing. You try to be brave, and say "pretty good". He knows you're not, and tries to be understanding about the deception. Sometimes it's too much, and you try to tell him how you feel. He doesn't hear what you are saying the way you mean it. He hears "She's not happy. She's miserable. She feels trapped in a bad place. She thinks that life has been unfair," and he thinks "I don't know what to do for her." It all adds up to a frustrated husband. But you are frustrated too. And that's part of the bond of marriage. Don't interpret his frustration as anger at you. It means he cares about you. You need to try to be brave and honest at the same time. Let him know how you feel, but try not to whine. Actually ask for the hug, and you'll know how it went over. "Giving up" will hurt him, because he's in it too. Now go and live the best life you can, and if it seems like too much sometimes, remember that you are also doing it for your husband.