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looking for someone to listen
Tue, 11/07/2006 - 13:47Topic: Women With Epilepsy
I have never talked to anyone other than my family about my epilepsy. I have really never admitted that I have epilepsy---I usually just say I am having trouble with seizures. That word sounds so foreign to me. I feel like my family thinks it is something that can just be automatically fixed by drugs and since that has not happened in my case they just do not understand what is wrong with me---I think they consider me lazy now more than anything else. I feel tired much of the time, I feel confused some of the time, I have lost much of my memory, I do not feel like going out in public and the most troubling part for me is that my ability to communicate seems to have been taken from me.
Stress is a huge factor for me with my epilepsy. We have our own business. That in itself is very stressful. In Sept. 2001 my sister was diagnosed with breast cancer. In 2003 my father had surgery for an aortic aneurism and then in 2004 he developed stage IV throat cancer. In 2004 my mother was put on full time oxygen therapy for COPD and needs my help for many things. I have three active children who are great kids. But as my Mom tells me even good kids can drive you crazy sometimes. My seizures started in 2004 when I really think my body and brain just could not take anymore pressure. I stopped working because I was looking for ways to reduce my stress. My husband is not really happy with this and has not really forgiven me for not working anymore. I just felt like it was all I could do to keep up with helping my sister and parents.
My sister died on the 24th of October---I will never get over this. We were very close and talked everyday of my life. I miss her---she was my only friend in this world. My dad is in remission from his cancer (Thank GOD), my mother is still here with us and my kids are great---so there is much to be thankful for in my life.
I just hate that the people I love most in life seem to think that my seizures are something that are under my control or can be treated with medication with 100% success. I hate that I feel less than I should because I do not feel able to work right now in my life. I have worked hard all of my life. I hate that my family thinks I am lazy because I need to lie down in the afternoons or because I feel like I cannot work right now. My husband seems to be drifting farther away from me. He has his own problems at work and I know my leaving left him with even more problems. I am sorry for this---but I really feel like if I did not cut down on the stress in my life I would not be here today. I had to do it. I was just reading some of the postings on this sight about memory problems to my mother---she said---don’t read too much of that or you will start getting those problems also. I told her I was grateful to find other people who were having the same kinds of problems that I was having. They made me feel like I was not the only person in the world experiencing these problems. Thanks for listening. I just wanted to tell someone how I felt and see if other people have experienced this kind of pressure from their family.
Comments
Re: Re: looking for someone to listen
Submitted by rebjay on Sat, 2007-01-06 - 18:25
hiya just read your posts and it was a bit like reading my own problems! my husband is totally unsupportive, takes the attitude that as i dont work( i was a registered childminder) i,too, am lazy ( despite looking after 3 young children, doing all the housework, sorting the bills etc etc ) he still insists i pay my share of the mortgage etc from my benefits and i have tried so many times to say how tired and low i feel, especially as my 13 yr old and 9yr old argue all the time and my 3 yr old is a real monkey! like you, i am made to feel lazy and i am constantly critizized the house is dirty and i must spend all day in bed or lazing about! neither of which is true. things are so bad now i have submitted an application for housing to the local trust, i feel a lot of stress will be lifted if me and the kids move on as i am not prepared to be let down and hurt anymore. so hang in there girl, if you want to pm me just ask and we can have a good old men moan together!!!!
Re: looking for someone to listen
Submitted by Cathy_C on Tue, 2006-11-07 - 14:14
Tracy, all I can say after reading that is WOW. You have been going through alot. No wonder you have epileptic seizures. Seizures happen due to stress and you have your share of it by the sounds. I feel bad
for you for not having a supportive husband and family. I didn't work
for 10yrs. I went through a divorce in 1996 and was on Social Security/ Disability and was a single mom to 3 kids. They are older now ages 16/18/26yrs. I am remarried now and have gotten back into the working field, but I tell you what, if I was to say I can't work, my husband would be right behind me telling me that was okay, we'd make it anyways. I know what it is like with you losing your sister. Shortly after my divorce while living in Fort Worth Texas I came back home to Maine and lost my baby brother 25yrs old in a motorcycle accident (not his fault). It seems that we both have been through about the same type of trials, and that is what it is "trials". You have to prove you can come through this and show yourself how strong you are. You more then likely have to talk to you
doctor about the possibility of some anti-depressant, and maybe the changing of your meds. I was on some meds when first diagnosed that made me act like a zombie. I was in bed all the time all drugged up. I did fine after they took me off them. I was on Tegretol. I had to take such high dose that it put me in that zombie state, but if I took less then I would have seizures. I got off that quick.
By the sound your family isn't backing you up. When your mom mentions you reading things on here, tell her that this is the only place anyone understands what I am going through and that you can learn alot here. Just so you know, since all the things I have gone through over the years I have remarried, gotten my license back, gone
back to work, just had brain surgery on 11/12/06 and have a full time
job waiting on me with our company when I go back. Please try to look
for the light at the end of the tunnel. The journey for an epileptic isn't easy but there is a light at the end. Stay focused on the good.
Don't be ashamed or worried about the word Epileptic or epilepsy. It doesn't make you any less of a person no more then someone with cancer or M.S. or anyother illness. You didn't choose to have it. There is a saying I say that always keep me looking to better my situation and it is " I may have epilepsy, BUT epilepsy doesn't have me!!!!!!!!!!!!!" IF you put that in your head and try to think positive you will get pass this stage of depression and go on with your life.
May God bless you and your family and I sure hope that they can come to see and understand what you are going through. If ya need to, print this comment out and let them read what your going through from
the eyes and heart of another person who has gone through what your going through. Maybe it will open their eyes to your feelings.
Sorry for going on for such a long time, but I sure hope I have given you some help and hope. May God be with you and give you a peace til you can get through this time in your life
((((((((hugssss)))))))) we all need them one time or another
Cathy
Re: looking for someone to listen
Submitted by michelhead on Tue, 2006-11-07 - 14:14
Hello, I am sorry to hear what you've been going through. Having epilepsy is hard enough without understanding from your husband and other family. Hopefully you can find support from everyone on this site. If you are having so many problems with full control of your seizures and you have cognitive and memory problems, I would suggest trying different medications. As other people have suggested, I would recommend seeing an eliptologist if your current doctor is not listening to your concerns. As far as your mom telling you not to read too much information, I would disagree. I think being properly informed is vitally important so you are not an uninformed patient. Sometime you need to be able to ask the correct questions when talking to your doctor. They don't always know everything, but finding someone who is specialized in this area is important. I wouldn't feel bad about not working as there are many people with epilepsy who also do not work. Although, I would hope that if you are mostly under control of your seizures and are on a medication or combination of medications that reduce your side effects that you might be able to return working. Good luck and I will keep you and your family in my prayers.