frustration

Re: frustration

Submitted by A.J. Henthorne on Sun, 2007-06-17 - 07:38

I totally understand what you are saying about being sick of this condition, I was diagnosed with Juvinille Epilepsy when I was 9 yrs. old. The Dr.'s always told my family & I that I should outgrow it by the time I was 18 or so. (yea, right!) I am now almost 32 yrs. old & throughout the last 12 yrs. my Epilepsy has only gotten worse & my seizures have become more out of control. When I was first diagnosed I was told I was having Complex Partial seizures, & until I was about 20yrs. old that was the only type of seizure I was experiencing. Over the last 12 yrs. I have now been diagnosed with having several different types of seizures, complex partial, generalized tonic-clonic, & just recently nocturnal seizures which can be either very severe or simply just some small movements and jerking. I have hurt myself several times during these night episodes such as, falling down stairs, severe tounge biting, falling between the wall and my bed & I got stuck under my bed because while having the seizure my husband was trying to prevent me from getting stuck but because of my thrashing around he could not do much. I do not remember any of these things happening to me I would just wake up in the morning feeling sick & of course hurting all over and nausious. I have even tried to take care of my 1 1/2 yr. old daughter during one of these unconscience spells, when my husband came into her room she was screaming and I was trying to put our set of car keys into her mouth to quiet her down! When my husband told me this the next morning I felt so terrible, I don't know what I would of have done had I seriously injured her or something. It is bad enough not remembering any of this but then to know that i am unconsciencely hurting myself or somebody else is a totally different story. My husband says i talk to him when i am up and walking around although the things i say do not make sense & he says that i sound like a child while i am speaking. All of this trouble with my Epilepsy, plus stress, anxiety and loss of sleep truly make my life a living hell! And my poor childeren have to practically baby sit me on the days when I have had a bad night because I am to sick to do anything & Iam always extremly exhausted. I am also trying to get SSD, but it is a long process. (or at least that is what I have been told) I can not hold a job because I can not be dependable everyday, Ican no longer drive anymore, & what bothers me worst of all is that I do not feel as though I can even trust myself to be at home alone with my kids in fear that I will have one of these episodes and hurt somebody accidently. My husband works for Union Pacific Railroad and is a conductor there so his job requires him to be gone for 2-3 days at a time & when he is not home either one of my friends comes and stays with us incase anything were to happen or we go stay at their house. Just for safetys sake, I do not know what I would do if i were to hurt anybody. So, I completly understand what you mean when you say this has totally taken over your life and made it very complicating!! I do not go anywhere or do anything without telling somebody first because I never know when a seizure might come on. I am soooo sick of having to rely on my friends to take me here and take me there all of the time, I mean come on like most people don't have enough to deal without having to babysit a 32 yr. old woman and her kids. I am starting to get depressed over it all because i feel like my life is not my own anymore, my body now controls me and what i can do instead of me deciding what I want to do!! And I feel as though my whole family has to live and plan things around my good days and my bad. And there has been so many times that i have had to miss those all important school functions for my girls, the kind of things that can not be repeated or done again. I just have missed out on so many things at times, and i know my kids understand but it sure makes me feel like i am letting them down as a parent. I should be able to be there for them whenever they need me I don't feel as though I can do that anymore!! It is also a let down as far as trying to be the best wife i can be for my husband, he does so many things for me even if he has plans and has to make the time to get it done he will. And its like i try very hard to make up for the things I don't get done on a bad day but I don't ever feel like its enough even though my husband is to great of a guy who says i do a great job and its o.k. i understand. I know it has to get mentally straining for him at times because he has to be the Father & also at times be the Mother. I don't know quite how to deal with all of this and i just wish i could make it go away, it would sure make my life and my families life so much more enjoyable!!!