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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 8.33%
i do my best and try to balance it all out 40 66.67%
my life is too crazy, but i do keep it in mind 9 15.00%
hardly ever, if at all 6 10.00%
Voters: 60. You may not vote on this poll

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  #21  
Old 10-27-2014, 08:39 PM
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Yeah Slim,we sure did take it to the limit,lol.lol.lol But we are still here mate,thats what counts.
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  #22  
Old 10-28-2014, 01:56 AM
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I got man boobs now
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  #23  
Old 10-28-2014, 08:49 AM
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Are you on Epilim by any chance George? I am on that drug and was told could be a side effect.Also if it gets too bad there is an operation to sort it out.Best off luck
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  #24  
Old 10-28-2014, 04:37 PM
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Originally Posted by Crash View Post:
Are you on Epilim by any chance George? I am on that drug and was told could be a side effect.Also if it gets too bad there is an operation to sort it out.Best off luck
No it's because I'm still eating like I used to when I was working but now I just sit on my ass.
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  #25  
Old 10-28-2014, 04:50 PM
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Oh well thats a good a reason as any George.
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  #26  
Old 01-27-2016, 06:53 PM
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I don't really think putting your own needs down the priority list is an option when you have seizures. If you don't take care of yourself and have a breakthrough, you will not be of much use to anyone else.

Personally, I don't have anyone like a spouse or kids depending on me. My dog takes care of me more than I take care of him.


The thing I think most people on the outside of E looking in don't get is just how long one seizure can wipe you out. Everyone is very sympathetic and kind about the actual seizure "event" but when you are still vegging out 24 hours later, they are accusing you of malingering. Or if you are not talking much or laughing at their jokes a couple of days later, they think you are in a bad mood when really it is just that your tongue hurts.

I have had a couple of relationships fall apart under these circumstances so I have just learned that I need my quiet private space to retreat into until I feel like being social again. I date and have relationships but I always have my "cave" and don't choose to share it with anyone I can't ask to leave.
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  #27  
Old 01-28-2016, 05:38 AM
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I live with my boyfriend and his Mum. I guess the only thing I rely on sometimes is lifts in the car, but I never drove before I was diagnosed nor did I have any inclination to do so. I was always an anxious person, and I get bad enough road rage when I'm being driven let alone driving haha! Plus, public transport links in my city are fine, it only takes me 10 minutes to get to town/work, and even before I was diagnosed My boyfriend would do the driving so that's no biggie. Even being 6 years seizure free I was never inclined to learn to drive.
I guess I do prefer to go out with someone though, as I said I suffer bad with anxiety, but I don't stop myself if there's nobody about or if nobody wants to go out. So if I need to go shopping, I'll hop on a bus.
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  #28  
Old 01-28-2016, 05:19 PM
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I try not be burden and push myself on anyone unlikely I would tell my son if things got worse he on needs to know bases.you have one crack at life and you got to live it
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  #29  
Old 10-30-2016, 08:54 PM
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I don't, per say, live by myself, but with roommates. I see it as 'living on my own' as I keep to myself and my seizures aren't so bad that I would need to live with someone in order to have an eye on me. My mom constantly asks if I have had any attacks and if I am okay, to just make sure nothing bad has occurred. I'm not letting my seizures control me. I have also been considering obtaining a seizure response dog in case I do have a bad drop attack, or simply for emotional support after a seizure.
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  #30  
Old 10-31-2016, 07:11 AM
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I do what I can to take care of myself. I try to eat right, exercise, get as much sleep as I can, take naps when tired, take my meds on time, and try to avoid unnecessary stress. but life goes on and I have things to do so sometimes I push myself too far and I pay for it.

We only get one go around on this rock, might as well try to enjoy some of it.
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  #31  
Old 10-31-2016, 10:43 AM
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There have been some really awesome comments in this thread, loving it!
When I first found out AND lost my drivers that first day I was LIVID! I hated my neurologist & everything he stood for. I ranted at him that "how can this even be possible? What do you mean I have EPILEPSY!!!??? What do you mean I've had it all my life?? You're just telling me this NOW??? At my age I am in no mood to start changing my life .....again..damnit man, I'm 52, just how well do you expect YOUR MOTHER to adjust to this kind of thing?? (No, i'm not his mom but was thinking age bracket.) Thanks for telling me I have to quit the job I just started because I can't drive to Rona & pick up supplies for the apartment building I am caretaker of!!!" I went on like that for over an hour & he was very hurt. I told him I didn't trust doctors because of all the meds I saw my Granma was taking when I was little.

Then, I went to Egypt, like George, but found that De-Nile don't help nothing. In fact I found that trip to Egypt just made things worse. Now I live in the country on my family acreage with my ex-husband and best friend. He keeps an eye on me & helps me through the seizures when I need help. He's the only one I "let" help me. I live in my own place here & he lives in his own place. We have morning coffee & meals together & he walks me home every night, at least when it's dark out. Out here you just never know if the coyotes are out back or not. LOL

Gigi, I like living alone too. I started to do some writing & a friend is helping me with editing, flow & publishing online & then helping me set it up for sale. She's awesome and lives in Minnesota. I live in Canada.

Now, about this whole having people you have to depend on thing........about that, yeah not so much. Hate being the one who has to go ask for help, I've always been the one people come to for help with their lives & now I have to do that...yuck! I feel that as long as I have my own home, I'm okay with my X "helping" me. I had a really hard time at Thanksgiving Dinner, here in Canada we have Thanksgiving before Halloween, not after. Something to do with when the settlers landed in Canada. LOL Asking for help is a really tough thing, especially at my age. I'm 53 years young right now. It was at that dinner I found out that my youngest niece had E for a while when she was very little. My sister never bothered to inform the rest of us. My niece was all, "It's okay Auntie. I had E when I was very little. I know and understand what you're going through. Don't be scared. I love you." That made things much easier.

About the driving to get around thing, I also live about 30kms from the nearest food store, pharmacy AND HOSPITAL! So not driving has really really taken away the only true independence I ever knew. Driving use to be what I did for pleasure. I love taking long drives to the International Peace Gardens, to the BC coast to visit my cousin and to the other end of the country to go visit people I know in Toronto, Ontario or Bathurst, New Brunswick. So being told I couldn't do my favorite thing in life pretty much sent me for a loop. I'm actually pretty ticked about that one still.

The beauty of living alone with E is that I have my home set up without doors ...they like attacking me & grabbing my clothing and smacking me in the face or arm. I hate doors! I love The Doors, but not DOORS! I have my furniture set up in a way that keeps me from banging into them when my balance goes funky. I am having a shower stall ordered and installed so that I remove the temptation to have a bath. I want a bath, I'll go to my X's house & use his tub tyvm

I never had babies, lost 7 but never had any. My first one was the hardest in the early part of my 2nd term. Now, knowing I have E, I'm really glad I didn't have babies. I want to be around kids, I'll go to a mall, thanks. But that's just me.

Living with E has been difficult, challenging, freeing & annoying all at the same time. You may wonder why I say freeing, well, it frees me from the constant question of "What the Dickens is wrong with me?" Now I know & that's a huge relief & therefore freeing. Simple.

One of the key things I have found is that if I am not getting enough sleep I will have a more seizures the next day. I say more because I get about 2-4 focal seizures a day. I can deal with that. The way I see it, it's better than the 600 I use to have! I tried the ONLY medication that the doctor deemed safe enough for me to use with my other health issues. I believe it was a generic version of Keppra, i think was the name. Instead of only having focal seizures I started to have convulsive seizures that lasted 48 hours solid, so I carefully went off of them & am staying off of them. I am doing my own research taking into account my other health issues & IF I can find something that won't set off something else, I'll talk to the doctor about it. In the mean time, Cannabis is my medication of choice. I find that as long as I maintain my dosage carefully everything works great, miss a dose & I got issues, take too much, I got issues. it's a balancing act, but I can figure it out quickly.

My triggers are primarily stress, improper sleep patterns & not eating correctly. Oh yeah, and keeping my house tidy. It doesn't have to be spotless or even remotely close to looking perfect or show-home ready, just tidy. I have also learned that I MUST SEE everything or it simply doesn't exist. By that I mean, if you don't want me to find something, put it in a drawer or cupboard & close it. I'll never find it because it's "invisible" to me. I MUST see my things or I simply cannot find them. the only things that I can find on a regular basis in drawers & cupboards are my kitchen wear & my clothes. Top drawer underpants & bras, next drawer socks & night clothes, next one is tops, shirts & foldable dresses (the rest gets hung up on a hanger), 4th drawer is pants or skirts and the bottom drawer is reserved for bedding. Everything has a p[lace. I've been like this most of my adult life & never knew why. Now I understand that subconsciously I have been doing this as part of the E. Go figure, your head doesn't understand what the rest of your body does so it puts you on auto-pilot & auto-sort. ROFL

Other triggers for me are the lights on emergency vehicles(lights & sirens alike), blinking traffic lights, people fighting drives me right around the bend, there are a few other things that set me off, but I think i've gone on long enough.

8 years ago today I quit drinking all forms of alcohol. So today is a good day, rain or shine.

Have a great day everyone. <3
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  #32  
Old 11-01-2016, 05:59 PM
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So glad to find this thread! CONGRATULATIONS mouse1963. 8 years is a long time! And I love your story. I have a TBI so i have always blamed that for my"have to see it" I completely understand that if i can't see it. It is gone! Far as I know it does not exist when it's not viewable. I live in town, close by an active city bus line. But just that I h had a status seizure on Sunday . If that happened to me alone.. I guess I would hope it stopped in time. I am going with my girlfriend to her work, a self employed dog walker/yoga teacher . And like now I hang around the local food co-op, at the tables while she cashiers . I think if I were at least in public someone would call for help.
I also try to get lots of sleep. (I may need to use sleeping s aids to sleep better. Triggers also include stress. I don't know about flashing lights. Can that cause seizures that happen days later?
I completely understand the "step" parenting hardship. I h raised a step daughter, who loves me but 2 we don't talk. And now my girlfriend lives with me and my 14 year old who is part time. He is at his mom's more. It sucks, now harder for everyone here. Sorry to go on like this, rereading question I thought to say supplemental MMJ helps lots.
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  #33  
Old 11-01-2016, 06:45 PM
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2 things I don't understand.
1 - what is TBI
2 - what is MMJ (Medicinal Marijuana?)

Yeah, the past 2-3 weeks have been hard making it through this last year of sobriety. I wanted booze soo bad it wasn't even funny.

Thanks for the encouragement.

I know for me, the flashing lights was usually a matter of minutes. But hey, I've been dealing with this for 53 years now LOL It's just another day at the "office" right? LOL
If there were too many emergency vehicles I would have a longer seizure. For me, more flashing & strobing lights or a super-trooper shining a light in the face will have me in seizure for a very long time, sometimes 2 days or more.

Mom said she noticed after I started school (way back when) that I was easily distracted and figitted a lot, according to my teachers. When I talked with her after the neurologist was done with me, she said they never even suspected E, just ADHD!!! Go figure.

Anyway, I have a tendency to go on with talking so I'm going to go eat now & I'll be back some time tomorrow.

Remember, you are the only one who knows how E truly makes you feel. No one can tell you what it's like for YOU because they aren't YOU.

Have a great 24.
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Old 11-05-2016, 11:09 AM
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I've been a work in progress for decades. :-) After some doing, I'm ok with asking for help during the "5%" times. My relationships are ok, I'm not a doormat, and I can say no.

Now I'm working on figuring out my meds and my sleep. My neurologist and psych agree I'm on way too many; and I haven't slept a full night through in years. Also entwined is that I need to pry myself away from the tv/laptop at night. (including you lovely people). And (dear God) they're trying to wean me off coffee.
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  #35  
Old 11-07-2016, 08:58 PM
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@Natalie67 I refuse to give up my last TWO cups of coffee a day! I'll pay that price. I have tried several times to quit drinking coffee & I can tell you this, the migranies, the seizures, the black-outs & mood swings are NOT worth giving up coffee completely. They can go SOD OFF if they think I'm ever going to give up my last pleasure in this life!
There are some areas in our lives, even those of us with E, where we have to draw the line and say "up your's Charlie Brown!" Now, if you don't go through the cafine withdrawals nearly as bad as I do, then sure try it. Your call.
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  #36  
Old 11-08-2016, 01:29 PM
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I would live without coffee if it caused migraine but as migraine picks it's own time to attack me no point giving it up.I have a drink but not wine that causes problems but G&T with a slice I manage few doubles but never the amount cause head aches.
Often I say sod it I going eat or do something and it in lap of gods
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  #37  
Old 11-08-2016, 02:00 PM
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I definitely look after myself and have had to even let go of some friends as a result. At the end of the day, I consider myself my own life partner and so I believe in treating myself and my body well and right.
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  #38  
Old 11-08-2016, 06:27 PM
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I have also had to give up some family(no loss)you got be responsible for yourself
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Old 02-02-2018, 05:13 PM
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Originally Posted by qtowngirl View Post:
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...
Hey qtowngirl how you been ? It's bee a while I'm recapping with all my friends on here how was your surgery? Did it help?

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  #40  
Old 02-02-2018, 09:24 PM
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I am in my 6th decade, as of last year and 5th decade of seizures. I have learned so much about myself and this disorder. The trials and tribulations of having a seizure brain has taught me about how to take care of myself , and yes it has shaped who I am. Along with triumphs have come the tragedies that this disorder has inflicted. First and foremost I am responsible for me and taking responsibility for me is challenging but rewarding. My down time is essential to my remaining seizure free, if I don’t get that and shut the world out, I have a high price to pay! I have accepted that that makes me a bit of a hermit at times.
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