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looking for someone to listen

Tue, 11/07/2006 - 13:47
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 heathersmithers on Sat, 2007-01-06 - 20:11
Hi Tracy That is alot of stress on your plate even without the support of your family,,, the illness in your family besides your own and three kids.. you deserve a nap even without the epilepsly and the meds... I lost my mom to breast cancer in 1999,,, it is hard to watch them go through that and then then watch them lose the battle... My kids are older 22, 19 and 13,, the two older ones remember watching their nana go through it... My relatives and my older kids seem to have their heads buried in the sand when it comes to my epilepsly and MS.. i sometimes wonder if perhaps it is because they are in denial still ... they watched what happened to my mom and just dont want to think that anything could happen like that to me no matter how much i reasure them... so rather than accept what i try to explain to them they would like to pretend that nothing is wrong to the point that they do not want to talk about it.... I to have the memory issues... rather embaressing when you cannot remember your kids names...grin.. but usually i just say,,, the youngest,,,middle or oldest and that works for me...lol The only scary time i had was when i went shopping and had a seziure and then called the cab company but could not remember my address or where i was at that time,, but luckily it was a direct line so they knew where i was and remembered dropping me off,, now i have a routine where if i go out i write down where i am going on a peice of paper and i have my address written down as well and always use the same cab company... much better than putting a peice of paper on me saying if lost please return to.....grin... my husband is pretty good about everything... i lucked out there,,, we had a couple of rough years financially while i was applying to canada disability pension,, but my older kids could use some improvenment...sigh... when they come home from college they lay on the couch and expect me to wait on them...that only lasted one visit,,, then we sat down and spoke to them and told them if that was what they expected that they should plan on staying in a motel next time and to budget for it as i no longer had the strength to cater to them anymore between the epilepsly and the ms... Do you think it may be possible that your family is just scared? That after losing your sister if they admitt that there is somthing wrong with you then they have to actually face it? I know for the longest time my husband did not really face it,, he was still great and helpful but not really facing it,,, but with the double dx of epilepsly and ms he has had to face it now.. and we have actually had to talk about things and he admitted that in the beginning he just pretended that it was not there... Just something to think about... p.s. something i did with my family was get ahold of all the phamplets i could and just leave them around the house everywhere,,,,the ms social worker suggested the bathroom...grin... was a good place to leave them...she said everyone reads there...lol Heather

tlh64, You know what I find

Submitted by INACLASSBYMYLONESOME on Tue, 2007-01-09 - 10:33
tlh64, You know what I find amazing after having read your reply is, the fact that I went to see my doctor yesterday and he said that a vast majority of woman who suffer from epilepsy have seizures around or during their cycle. Just as some women suffer from migraines around that times, woman with epilepsy sometimes seize during that time. I would have never guessed that but with the strogen level being so high and hormones raging it kinda makes sense. I hope that one day sooner than later your family comes around and is more supportive. My mother, brother sister and my best friend are all extremely supportive which I thank god for everyday. My mother even has FMLA so that she can accompany me to any visits or if I have to go to the hospital behind my condtion. Than god for clinton, he put FMLA into affect and without that alot of people would be without work. :)

Re: tlh64, You know what I find

Submitted by tonialpha on Tue, 2007-01-09 - 12:22
That is exactly when I finally went to a doctor. I felt better, my mother had terrific headaches. It makes sense now.'

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