Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

deeply depressed

Sun, 10/22/2006 - 16:40
I am a 39 year old mother and wife. Up until two years ago, I hid being epileptic very well. I worked many, many hours to avoid explanation to my family (thinking I was protecting them, and afraid they would leave). I created a block between myself and my co-workers so no one would notice the seizures. They all hated me. I wouldn't talk to them, sit with them on breaks, allow a relationship with them. So when I disappeared or acted strange, no one would notice. Then the grand mal sz over took the petits and working was no longer an option. Suddenly, I AM NOTICED for who I really am. I am incontenant every day. As soon as one bruise heals, another is formed. I can't afford the neurologist's visits or the rediculously expensive lamictal he has prescribed. My husband is working nearly 100 hours a week just so we can scrape by because our wonderful government says that five to ten grand mal seizures with a side of uncountable petit mal seizures every single day is not enough to keep me from working. I am isolated to my home to avoid serious injury and embarrassment, while my family stays busy without me. I know that there are so many of you living every day with epilepsy and have good, normal lives. I know that many of your sz are controled by medication, or you have had surgery, or NVS, so I need your help because I am not controllable and see no end in sight. I don't want to be depressed. I see the frustration in my children's eyes every time they have to pick me up off the ground. I never get to spend time with my husband as he tries to support our family on an hourly wage. Any suggestions?

Comments

Re: deeply depressed

Submitted by wldhrt13 on Sun, 2006-10-22 - 19:21
Sweet Jesus! That is just awful. I totally identify with your pain, although my circumstances were a bit different. In the beginning of my twenties I became disabled (the government DID agree I couldn't work). The Social Security Administration bases your SSDI on your earning potential at the time you become disabled. And let me tell you, I only received $585/month because I was only able to make minimum wage at the time I became disabled. I became a financial burden to my mother and her husband. I had no children and no husband back then, but the toll it took on my mother and younger sister was great. Mum wept at night because my life was being robbed while she sat back helplessly and watched. I couldn't function socially either. I was physically incapicitated sleeping for 17 hours a day some days. I coninually contemplated ending my life. It was the isolation for me, that was most devastating. For whilst I desperately wanted human connection, and close relationship, I feared the embarrasment and shame of my circumstance and disabilty. I knew with all my rational faculty, that I shouldn't have felt shame, but it nevertheless was there. It prevented me from trying to reach out and make friends etc...It was perhaps some of the darkest hours of my life. But yes, my rainbow came. Not for several years later though. My health improved, I went back to work full-time, was no longer disabled. If you had asked me then to see the light at the end of the tunnel, I could not. But I am here to tell you that there is brighter day to look forward to. Hope can be restored. What helped me was the continual encouragement from my mom (she reached saint-like status at that time) prayer, and innoculating myself with positive thoughts. And yes, I had to "fake it til' you make it." I went though the motions of positive self-talk even though I didn't really buy it yet. I can't tell you the day nor the hour, but things will get better. There are going to be a lot of happier days that await you. Hang in there! If you ever need an ear, please feel free to email me. ~pamela

Re: Re: deeply depressed

Submitted by caradee on Sun, 2006-10-22 - 20:54
pamela, thank you so much for the words of encouragement. my sz have increased over the years and nothing seems to stop them. my family and friends actually accused me of faking the episodes for many years and now their guilt is too much for me to take because i don't know if i can forgive just yet. my mom calls me every day to ask how i am (she lives about an hour away) and is always inviting me to stay with them, but its so hard for me to wonder where my health might be today if i had some acknowlegment and encouragment back then. suicide has been in my thoughts since i was a teen. i don't anticipate i would ever actually do anything, i just always wish for an ending. i have 5 brothers and sisters and believe they still think i'm faking! now, don't get me wrong...i have the most wonderful husband and children a person could ask for. unfortunately, when the constant trips to the hospital and the sz started to ware on my husband, he had an afair, and blamed me for his stray. i have since forgiven him, it was a long time ago. now he is always there for me and seems to care. my daughter is my light. she is 18, a freshman in college, and determined to become a doctor, specializing in epilepsy. she has picked me up off the ground more than i'd like to admit. my son is 13 and so very protective of me. but they both have such busy schedules and i can't expect them to stay with me all the time, so i am at home alone for most of every day. just talking helps. Cara

Re: Re: Re: deeply depressed

Submitted by wldhrt13 on Sun, 2006-10-22 - 21:20
talking ABSOLUTELY helps! my God, if I didn't have my best friend to vent on...I'd be in a huggy by now, bouncin' round the room. Of course at that time in my life, I didn't have her, she was living on the west coast following the Grateful Dead (1989). It sounds like you certainly have had your share of suffering. I have to believe that I am a better person for my suffering... well maybe not better, but rather a more whole person. Some folks go their whole life with not much going wrong. And then, there are others, who seem to go though torrents of adversity. But ya know what? I believe empathy, true empathy, comes from having walked a similar, if not exact, road. I mean, once you've been down in that valley, and live to tell about it, it changes you. I believe for the better. We are meant to use our experience to uplift and transform others. Who knows better how to help a mother grieve, than one who lost her child... You will keep on keeping on, you will get better, become stronger. They say a when a bone breaks, it mends stronger than before the injury. That being said, once you come out on the other side of this pain, you will be that much more resilient than before. ;)

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.