Just...

Discussion in 'Suicidal Thoughts and Feelings' started by tomaat, Jan 25, 2010.

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  1. tomaat

    tomaat New Member

    <mod edit : *sparkle* : methods>

    Been on a complete decline since 2008 when all friends and family made it clear to me that having epilepsy was reason enough for why I shouldn't be included in the holidays. Never recovered, and having friends who knew how that made me suicidal last year - even having to hold on to me to stop me from walking off to commit suicide, not caring about including me in the holidays this year didn't help. In 2008 I couldn' t leave the house on a windy day or go into a store, so I spent months looking forward to the holidays - they were something fun, something I could actually do. Only to find that not a single person who knew me had thought to include me on their invite list (typically had 3 invites per holiday) - and yes taht lack of invites includes all family members, who definitely did have a family celebration for each holiday. Seems as more time passes from the holidays, the worse the fact that I'll always be excluded did (and believe I tried everything to have so much as a single invite - even offering strangers $300 so long as they'd let me attend their New Years party, and thats all the money I had to my name or I'd have offered more) But I was still alone, like I'm always doomed to me. You can say I'm not, but in reality when every friend and family member I've ever had has completely walked away from me for no other reason than a word became attached to me, you can't honestly expect someone who never knew or loved me before that word became attached to me, to look at me and even consider I could be friend when they know nothing about me except that I've epilepsy. (And i know its the word and not the seizures, because most of my friends and family were perfectly okay with the seizures, willing to spend time with me and help me through their effects, before they had a name for them that proved they were seizures) Have only had fewer seizures since that word came out, and down to zero friends. All but three family members disappeared completely from my life once they heard epilepsy - and one only stuck around so she can call and yell at me for having seizures, and tell me I'm full of bullshit when she asks how medicaid works and I begin explaining that I'm under doctors orders not to work, which I have to follow if I want access to my $4,000/month medicine

    The depression that caused so many suicide attempts last year was artificial - entirely induced by a medication I was taking, and a neurologist who refused to consider that my medicine could have any effect on my emotions (even though one she put me on is well known for inducing psychosis, which it did, causing me to lose my bf) Finally had to stop taking the medication on my own because it was the only way I'd have a chance of living through the year. Suicidal thoughts went away in 5 days, depression in 2 weeks.

    Except, no one would even consider forgiving me for how I'd been on that medicine and so now real depression has come from being excluded and shunned for reasons that the few who didn't hate me because I was epileptic have chosen to forever hold against me. And it can't ever possibly get better because no matter where I'll go, I'll still be epileptic. And being epileptic is the sole reason I'm shunned from everything - not behavior, not lack of room or transportation, solelyt hat the word epilepsy is connected to me
     
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  2. total eclipse

    total eclipse SF Friend Staff Alumni

    Epilepsy can be controlled with medication and even with new treatments an electrode inserted into the brain where seizure activities occur. I must say your family needs to be more educated and less fearful of this illness. I would also be depressed if i was excluded from holiday get togethers. I would tell them outfront how you feel so they understand that you are feeling isolated.
     
  3. tomaat

    tomaat New Member

    Unfortunately that's not true. In 30% of epilepsy cases, medication doesn't work - I'm one of the 30%. Its called medically intractable epilepsy. There are only 15 medications available for my type of epilepsy and I've tried 14 (the other they won't put me on because of other health problems). ONly one seemed to work and it gave me a stephen's johnson rash before I was titrated

    They've only recently discovered that many people who are drug resistant have seizures caused by electrical problems in their brain, rather than the chemical that all available medicines causes. A medication targeting electrical causes is at least 10 years off. And considering I failed 10 drugs available due to allergies I'm not optimistic that I'll be someone who can just take the first one there is and have success

    VNS is also not used for people with heart or breathing problems - I have a heart murmur, and possibly asthma (got a diagnosis but I truly believe its the seizure medicine in correlation with seizures making it look like I have asthma rather than that I actually have it)

    I know you didn't mean it this way, but my biggest problem with people is their belief that I could "just fix my epilepsy" if I cared too, and so they use the fact that I'm still having seizures as proof that I have no intention of ever not being on disability. Well that and the fact I must be faking since I had a good 15 year break without seizures.Even one of the paralegals at a major law firm I called to get an attorney for SS, told me that epilepsy couldn't return after years without their being an accident - considering epilepsy is one of the few disorders specifically mentioned as qualifying for SS, and that most cases of adult intractable epilepsy have occurred after "outgrowing" seizures in childhood there is no excuse for anyone working at a law firm handling SS cases to even consider thinking what that woman told me

    My epilepsy came out of remission right when I was finishing my master's degree so people love to accuse me of faking disability because I was afraid to graduate (makes no sense as they know I planned on immediately getting a phD) or being afraid to work in my major (also makes no sense as I'd been working full time in my undergraduate major for 3 years, and part time in my master's major for 2), and just because I'm lazy and looking for a free ride - Yeah, because I paid my way through two college degrees entirely by myself, earning a 4.0 both times, sometimes even working three jobs while attending classes full time , because I can't stand the idea of doing work.
     
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  4. total eclipse

    total eclipse SF Friend Staff Alumni

    I am sorry so many people are judging you. You seem to understand your illness well. I am quite aware how debilitating seizures can be. I hope in time there will be other options for you Don't listen to what others say okay just continue to try to do well. If it went into remission before it may go back again. take care.
     
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