How do u get past the thoughts Of seizures?

Re: Re: Re: How do u get past the thoughts Of seizures?

Submitted by gretchen1 on Wed, 2006-04-26 - 07:16

I think your complaints are valid for all of us at one time or another. Often what you've said are topics of threads. There are many different living situations too. Such as you said you live with your parents. Apparently I'm much older than you, both of my parents are even now deceased but as much as I still love and miss them? This would be far harder for me if I didn't have my own home. Also I think of people with epilepsy who still have small children at home. Mine are young adults. I really can't imagine having this and having small children too. IOW we all have different situations that present our own specific challenges. I think for me the problem of having epilepsy is that it stripped so many of the things that were fundamental in my life. It totally changed my life style too but not to the positive, at least financially and let's face it, that's big. Relationships are difficult for many of us and people are social beings. I have people who will call me or email me butbecause I sz so much frankly I can tell, they do not want to be around me, and that hurts. When I first got this I was very hungry to know as much as I could. I was so shocked with this diagnosis and realizing all it was changing in my life I was hungry to be with others with the same problems, learn from them, just have the socialization too. I was diagnosed within a week after we had moved to a new town so I had absolutely no support system except my husband. I was used to living in my home town where I had a large support system. So what happened to me is that I joined an epilepsy forum. I made a lot of internet friends, got a ton of support and learned a lot. I was also going through a lot of AED trials and each one made me quite sick. I sz a lot as I said, daily. It was a very odd and insecure feeling that I could no longer trust my body or mind. That took me a long time to get acquainted with - just the concept. Over time I had to realize that my life was epilepsy saturated. It really felt like I lived in a house with 3: me, my husband and epilepsy. I noticed my children weren't emailing as much and when I asked one why - she said because ALL you talk about anymore Mom are your seizures, your gripes about your life, it's all about epilepsy. Whoops. That email was a wake up call for me. I had felt and I was victimized by epilepsy but over time I was victimizing myself and others around me too. I had to reclaim my life.I had to build up my self esteem again. Take a personal inventory and not count what I'd lost, but what I had left. One thing I did find was that I had a lot of skills I had never thought about much but I put them into action and I found my mind being stimulated, the day went faster, I was more enjoyable because not all of my conversation was about me, I, and my epilepsy. I also started making myself get out and around people. Maybe only browsing slowly through a store. I went to the schools and fouond out their schedule of speakers and programs and went to those. I joined a different church that was friendlier. I didn't know some of my neighbors so I baked bread,took a loaf to them with a note introducing ourselves and wound up having a nice sit down visit with many of them.We've moved now but some of those people I'll always stay in touch with. I also started avoiding people who seemed to want to take care of me. I had a problem where some people didn't want to be my friend,they needed for themselves I guess to take care of me and I found that wasn't healthy for me, I resented it but had felt bad about those feelings before and humored them. I stopped that. I can not say that I now have a big brilliant full and normal life. I can tell you I have a life and my name no longer feels like it should be "epilepsy". It is now something I have, a part of me. It's no longer all of me. That happpened very insidiously. I think one of the first things I did to get out of this that I still do was the most helpful. I set a realistic routine for my day and stayed with it. I adjust it often as my life changes but the difference is I no longer get up and see how do I feel IOW what can I do today based upon epilepsy. Having a routine that is varied between chores, something artistic,socialization, shopping or however you would structure your life has been a real aid to me. It's also calmed down the torrent of emotions I chronically felt. I've found since I stopped being epilepsy saturated and have other interests now too? I attract new friends now. When I didn't before I assumed it was because I had epilepsy. Now I know it was because everthing about me was about epilepsy. But I also think I had to go through that phase. The reason why is because this hit me very hard. I'm not saying harder than you or anyone else, but it did hit me hard. It was also very hard on my husband for specific practical reasons. Be kind to yourself. I don't think anything is wrong with you. I think you need to do an inventory of yourself now and find out what is right with you. Then go on and live again with your newly built structure. Good luck, this is very hard. Gretchen