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View Poll Results: having epilepsy, how do you put yourself as your priority?
ALWAYS - regardless of others' needs, even my spouse and kids 5 8.20%
i do my best and try to balance it all out 41 67.21%
my life is too crazy, but i do keep it in mind 9 14.75%
hardly ever, if at all 6 9.84%
Voters: 61. You may not vote on this poll

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  #1  
Old 06-27-2014, 09:19 AM
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who actually looks after themselves?


where do you put yourself when it comes to... looking after yourself?

for ex: i am a stepmom (thx epilepsy meds, decided not to have kids), and before i met my bf 7 years ago had nothing to worry about, but me.
taking on a responsibility as such, stress level went high, and stress is my main seizure cause. simply due to that i started having more seizures, to the point of putting my car in the ditch and seizing in the shower. did i start worrying about me then? no.

even after brain surgery not as i should, tho i will say i've learned to get, alot, better with it. so how do you see your epilepsy, considering your responsibilities in life? keeping in mind that yes we have a disease, BUT, we're still regular human beings with the regular life stressors that everyone has.
interesting to see how many of us know we have to come first, and how many actually do so...
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Old 06-27-2014, 10:32 AM
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I come from a long line of stoics (thanks Mom and Dad!), and my default is to ignore my own problems and take care of others first. And for most of my life that hasn't been a hardship -- I don't actually have that many problems. I don't have kids/spouse and my epilepsy is well-controlled at this point, so I have energy and attention to share.

I did have problems I was ignoring, however, when epilepsy first showed up. My initial seizures arrived at a time of enormous emotional stress, and ordinarily I would have said that I could handle everything, no worries, I'm fine, etc. etc. But the seizures, (along with being physically injured and unable to drive) gave me "permission" to depend on friends and family in a way I never had before. In the process I got the emotional support I wouldn't have asked for but really needed. So epilepsy taught me that it was okay to ask for help and to let others take care of me.

Epilepsy also taught me that it's okay crucial to be aggressive in order to get responsive health care. Being a well-behaved patient isn't necessarily the same as being a well patient.

So I sort of straddle the poll answers. 95% of the time there's no need to put myself at the head of the line. And then there are those 5% moments when I know what I have to do...
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Old 06-27-2014, 11:59 AM
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I take care of myself and my dh who may call me everyday to see how I am doing.
My seizures may come and go for no reason at all.I refuse to sit at home just because I might seize so what.

My life wouldn't be worth living if I lived it the way other people thought I should live it.
I'll live my life and the heck with wha tothers think I should do.I know when I should stay inside because I never know when I might have some bad seizures life is full of stress and especially mine some time.
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Old 07-01-2014, 11:51 AM
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I live by myself and I am the one who completely looks after me now, regardless of seizures or whatever.
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Old 07-01-2014, 12:25 PM
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I live alone and take care of myself. I have had neurologist and a nurse in ER question my daughter about my living alone. I do not want to be a burden on her or anyone. I feel after reading so many people issues on CWE that my problems are nothing. After taking Dilantin for 30+ yrs I started having breakthrough seizures end of 2012. I had my last seizure at dr office exactly one yr ago today. She switched me to generic for Keppra. I had the worst few weeks of my life when I first started taking it on July 2nd. I have been on it for a year now. I really hate it but I must admit it is controlling seizures. Maybe if I can make it another two years I can start to get off of it. Always thought my seizures were the cause of hormones and after going thru the change you go thru getting older I would not require any meds. That is my goal. One year down hopefully only two more to go.
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Old 07-03-2014, 10:48 AM
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Originally Posted by Nakamova View Post:
Epilepsy also taught me that it's okay crucial to be aggressive in order to get responsive health care. Being a well-behaved patient isn't necessarily the same as being a well patient.

So I sort of straddle the poll answers. 95% of the time there's no need to put myself at the head of the line. And then there are those 5% moments when I know what I have to do...
well said nak, both the 'well-behaved' and the 5% moments.

ha tho i'm opposite of ya, 95% of the time i need/should put myself first and 5% on others (uhhhh, hello everyone in my house, they took part of my brain out it wasn't a #%&#$^%! ingrown toenail).
but, with a distracted man (hears next to nothing when i talk) and two teenage kids...? tbh keeping them all in line is not a choice i really have, it's a necessity if i don't want to either wake up on the floor or give one of them a beatin' bleh.
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Old 07-04-2014, 04:46 AM
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I definitely don't look after myself enough (hence why I am currently in hospital) partly because I am still in denial about having epilepsy and partly because I take on too much stuff
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Old 07-05-2014, 11:05 AM
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I've had this "brain glitch" all my life.
I have had to learn how to take care of myself after my ex-husband left with my boys.

I have never really learned to socialize very well, but I have learned how to repair stuff on my own around the house.
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Old 07-05-2014, 11:11 AM
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Quote :
who actually looks after themselves?
For me it's a two-way street. There are times when I need some help. IE: going shopping,
getting to Dr. Appt, etc. But general cooking, cleaning, etc. I'm fine on my own. I do live with family right now. But down the road I plan to get out on my own. I'm just waiting to see if my surgery is a success. So far so good. One month down, twenty-three months to go.

Once I can safely travel on my own, I'd be good as gold. Be it public transit , or driving myself I'll be able to go back to school, work, or both. Then my life will be able to move forward, and out of this Epilepsy Limbo.
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Old 07-06-2014, 02:40 PM
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I'm in a newly evaluative state because of one stupid seizure. I don't like this whole feeling helpless thing one bit. Hopefully this turns out to be nothing.... but I'm not ashamed to say that when I was told I couldn't drive I lost it! Never mind that I woke up confused and scared, in my underwear with my emt neighbor/plumber trying to get me to put an oxygen mask on and that I didn't know who he was... or that I'd peed myself... who the HELL are you to tell me I can't drive? I live 20 miles from anything. I have three kids with involved lives... a business... telling me I can't drive is way worse than having a seizure! And it necessitates others taking care of you. I hate it. I feel helpless and infantile. I can not have a seizure disorder. I don't know how the rest of you do this, and have done it. I really don't think I'm capable...so I'm praying this is turning out to be nothing. Rant over.
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Old 07-06-2014, 07:18 PM
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I also live by myself I try my best not to burden anyone else but I do get rides (once in awhile) and stuff like that from a family member.
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Old 10-04-2014, 12:12 AM
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well, i mostly have my kitchen to dance in ,
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Old 10-04-2014, 06:57 AM
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Was first diagnosed in 2006. Working full time in school system, college at night, expecting grandchild, (worried because lost 1st grand, from another son, at 10 days old of congenital heart failure) Luckily, my dear husband was with me and was put on Keppra. 2008, husband passed away suddenly. World came crashing down. Spent Christmas eve in ER. Given Ativan.
Today I live alone in a condo. My sons and grandkids are minutes away. I am on 1000 mgs of Keppra and still take Ativan to sleep. I am the go-to granma. If anyone needs anything, they come to me.
I HAVE BEEN VERY LUCKY THAT THE KEPPRA CONTROLS ME VERY WELL! Never have hurt myself. Never had my license taken.
Stress and lack of sleep are my main triggers.
Everyone here is so helpful and always willing to share.
Good Luck!
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Old 10-05-2014, 12:51 AM
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I am still in denial ><
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Old 10-05-2014, 01:05 AM
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it gets easier

http://www.recover-from-grief.com/7-...-of-grief.html
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Old 10-07-2014, 07:00 AM
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unpredictable E


Am into my fourth decade of epilepsy fun. I have gone years w/o seizures, second child was stillborn due to seizure, and amlost lost my life years later. I have a respect for E now, no more denial. Two marriages, two kids and three grandkids later, I live in someone's house so I dont live alone. Partials are my seizures of choice in the last four years, I work but dont make a living wage. After years of seizures and meds it has taken its toll but I try to be as productive as I can. I feel fortunate, and sometimes bitter. I wanted the fairytale but reality said otherwise!
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Old 10-09-2014, 06:01 PM
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I barely worry about myself. I have three kids to take care of and I am the only one who keeps the house clean. My bf works and lately been having some issues. I am constantly exhausted and he doesn't listen when I tell him. And today really feeling like he no longer gives a damn about me. Pretty much feeling stressed, upset and depressed.
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Old 10-11-2014, 01:27 AM
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I used to only take all my meds oonce at night but I started loosing my equilibrium and blurred vision. So now I take it throughout the day. It was mainly the dilantin side effects
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Old 10-27-2014, 05:54 PM
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I certainly look after myself a lot better now than i used to in my day to day life.At one point i should have wrote "The What Not To Do If You Have Epilepsy" book,might have been a best seller,but as the old saying goes you live and learn.
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Old 10-27-2014, 07:18 PM
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I'm pretty much the same as Crash- really took it to the limit when I was younger, but now I go for morning runs on the beach, have mainly switched to vaporizers instead of cigs, set multiple alarms so I don't forget my meds etc etc

Could probably do with a better diet though lol
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