tell me why u stole my life

[mia3769]

:blowup2::blowup2::blowup2::blowup2::blowup2:

So Tired...

So frustrated...

So Angry...

So !@#$%^&*!!!! helpless!!!!

So So ready to give up!!

I wanna leave this house but can't

GRRRRRRRRRRRRRRR!!!!!!


:horse:

HELP???!!!:bondage:

onder:onder:onder::roflmao:onder:onder:

 

[valeriedl]

I know just how you feel! I've had epilepsy for about 8 years now and it's just seems like I can't do anything sometimes.

I hate the fact when I look in the fridge and need milk I just can't jump in the car and run out and get it. I always have to ask someone to take me places or do things with me. I just can't go to the mall and do some solo shopping.

When I want to go out with people they say "Ok just meet me there". When I tell them I can't drive because of the epliepsy they just look at me like I'm crazy, most of my friends haven't seen me have a seizure so they don't under stand what I go through sometimes.

Most of my friends live close to an hour away and have kids so they have to come here to see me, and it's really hard for them to get out too sometimes. Alot of times my friends and their kids will spend the day together.

I think I've just learned to get used to it. Luckily I've got a very supportive family and friends that help me through this alot.

Any time you need to talk let me know, I'm here for you, and so is everyone else on this board!

 

[Loopy Lou]

I'm sorry to hear that you're so stressed, we all feel that way sometimes. We're here to listen. Is there anyone who can support you with getting out of the house for a while? Even a walk or something might help you relax a bit.

 

[Nakamova]

Sometimes it just sucks doesn't it? Don't give up! Anger is good, that means you're alive and kicking. Fatigue isn't helpful -- if you're tired, try and get a little shut-eye, it can really help. If you're hungry, get something to eat asap, even if you have to order take-out. And I know this isn't necessarily the best approach, but when I'm feeling down I think of my cousin with early-onset parkinson's and I realize I don't have it so bad.

And check out this thread to get a laugh: http://www.coping-with-epilepsy.com/forums/f21/cqs-10242/

 

[Endless]

Oh, Mia. Sighhhhh... I'm with you, sister.

Whenever I'm not exhausted I'm frustrated as he$$. I know my life will never be the same. I accept that. But I'm having trouble envisioning what that new life will look like, and how I'll actually love life like I used to.

Frustrated. Tired.

We all need a vacation from Epilepsy. Do they have epilepsy summer camp for adults? Say, a special week at club med? (or as someone put it in here, club no-med)

Vent away. We're all here for you.

 

[mia3769]

This is exactly what I am going thru, i can't stand it. i used to be so independent and now well i cant even go in the backyard alone i feel like im losing my mind
:huh::loco::evil::embarrassed::touche:

 

[mia3769]

I wish someone could be here to take me out im ready to just leave by myself but i kno i will only wake up someplace confused and unaware of who i am, who they are, and why they are trying to touch me then my head and body is gonna hurt for another couple weeks if not longer who knows maybe i won't wake up at all this time:clap:

 

[valeriedl]

What type of seizures do you have and how often are they?

Do you live alone or with someone?

 

[mia3769]

I have grand mal seizures the last 3 months have been particularly bad been in hospital 3 times last month my last seizure left me in a wheelchair but im ready to crawl if i have to i just need to go ya kno??

:gob::gob::gob::gob::gob::gob::gob::gob::gob::gob::gob::gob::gob:

 

[Endless]

Mia,

I'm frustrated by having to plan my outings, too. I'm trying to build more transportation options for myself, but it's taking some time. I want to buy a bicycle. I'm a little scared of this one because of the heavy traffic near my home. It's legal for me to ride it, and I may kill myself on it if I have a seizure but at least I won't take out anybody else with me.

My family and friends will take me out if I plan a long time in advance. Like a few days.

A neighbor girl has a learner's permit. She loves to go out driving, but the law requires that someone who has been driving for at least 15 years be in the car with her. I thought this was a GREAT alternative because she is eager to do it and is available most of the time on short notice. Then I noticed in the law the person with her has to have a valid driver's license. Darn. I'm not sure mine is valid, even though I haven't relinquished it. I've just put it in the back pocket of my wallet.

My next thing is to try to find all the elderly retired or disabled neighbors who have a hard time getting around but can still drive. Maybe we can trade - I'll do some chores for them, they can drive me around. Win-win. One little downfall is that I'm in pain from headaches most of the time (from IIH), so I'm not in great shape for my own chores let alone theirs. But I'm getting better every day so I have hopes this will be a GREAT option soon.

I'm hoping that some time in the future I'll have enough transportation options that if I want to go out I can do it same day. Maybe not same hour, but same day.

Mia, in your post you were clapping after saying maybe you won't wake up from your seizure the next time. Please don't feel that way. My headaches get so bad sometimes I just wish for someone to lop my head off. Seriously. But I've hung in there and things are getting a little bit better now. I think my doc may be headed in the right direction and I have hopes of being out of pain someday. Don't give up. Someday the seizures, depression, everything could be under control and we'll all have our lives back. That can be true for you, too.

Big hugs.... We love you, and it's all going to be okay.

 

[mia3769]

Thank you Endless

 

[Cint]

Mia,

I've had epilepsy for 30 years now. Before seizures, I had a career in the airlines and planned to fly and see the world. That all changed the morning I suffered 1st and 2nd degree burns, due to my 1st TC seizure, so was in the hospital for several months and have had many surgeries over the years for the burns. I've suffered SP, CP, and TC seizures, and have tried 11 medications had a left temporal lobectomy to no avail. So I do agree. Epilepsy does change one's life. I also suffer from depression, playing with those suicidal thoughts, but never gave in to them. And I also have Type 1 diabetes and take insulin shots 5 times a day, along with two AED's and an anti-depressant. I know I could still have a seizure, but I now live by myself, and I'm not going to let it dictate my life. Is there any public transportation near you. I live very close to it and/or call-to ride.

 

[msuder0583]

mia, don't be frustrated. i've had epilepsy since 16, so for about 10 years now, and my driving has been an uphill battle but i've been able to keep my license. i'm not sure what your state laws are. same thing with my medications. it's a constant rollercoaster, and more than likely it's gonna be that way with you too. but you just have to hang in there, and keep in mind that there are others out there that have it worse than you and it can possibly make you feel better. i.e. my sister has cystic fibrosis, so she is in and out of the hospital all the time and probably won't live past 25. plus, no one i know has epilepsy and that's why i came on here, and it has really helped me out, so you did the right thing. seizures are a scary thing to have, at least until you become unconscience =). then its smooth sailing until you wake up. but unlike others who say that understand; they don't. but we do.

 

[Meetz1064]

Hey there

Mia. I, too, have a clue how you feel.

I have had E for all 46 years of my young life. I wasn't officially diagnosed til I was 13 months, but hey, at least it was caught.

Things didn't start to go out of control for me until I was about 18 and in college. Then it got worse when I married and had kids. I wasn't totally controlled for a while--and I've gone through at least 14 drugs that I can think of off the top of my head.

However, once I started removing large stressors from my life, changing my diet, found the right combination of meds (OK, it's taking FOUR of them but it's working!!!), I am doing MUCH better.

Trust me, I've had the suicidal thoughts as well. But it IS possible to lift yourself out of it. YOU CAN DO IT. I KNOW YOU CAN.

(((((((((((((((HUGS))))))))))))))

P.S.

I do quite regularly want to lop my head off as well--but mine's more attributed to migraines that make me feel like my head is splitting into a thousand pieces.......

 

[mia3769]

Just wanted to say thanx to everyone... I was having a really bad day and night... but all of u got me thru it!!!!! thanx again:dancing: I'm so glad I found u guys!!!!!!!:dancing:

:wave:

 

[Eibhlin]

Mia,

I know I also definitely feel that way at times (some times are longer than others) and i'm so glad I also joined the forum yesterday (same as you!).

I think it's the lack of independence more than anything that is so frustrating.

I agree with Valeriedl about people's lack of understanding regarding inability to hop in to a car to meet up.

There's also the ignorance!!!

But I know I've pushed myself harder because of it and I'm more determined to succeed (although the road to success is quite alot slower than for others and v bumpy!).

Sometimes, when I'm feeling v positive, I think I must have epilepsy for a reason and try to figure out what my mission is, and other times I'm just upset. But most of the time, I just carry on, but it's healthy to vent.


Lol re the idea of club no-med and epilepsy summer camp - fantastic!!


I was telling my husband this morning about the forum, how it's great to have contact with people who can empathise rather than just sympathise. I don't talk about my epilepsy much, except to my husband and family and a few close friends - most people don't know and are usually shocked to learn about it.


I'm glad you're feeling better today; it's good to share - onwards and upwards!

 

[sbncmo]

Hi Mia,

I'm so glad you are doing better today. (I'd insert some of those cool smilies, but in all my time on CWE, I've never figured out how.) Epilepsy is difficult to deal with even on the good days, but some days are the absolute pits!!! And we have all been there. Suicidal thoughts go with any major illness/disorder - it comes & goes. I'm glad everyone was here to empathize, to share their own experiences, and to encourage you to help you make it thru this rough spell. You have true friends here.

Shelia

 

[mia3769]

Shelia

thanx and click go advanced for smileysunch: :clap:

 

[sbncmo]

Thanks Mia. It has been a while since I was here & my memory isn't as good as it used to be.

I wanted to say I appreciate your thread "tell me why u stole my life" because it certainly seems like that is what has happened. We can end up feeling like a shut-in, home-bound person, torn away from everything we have ever known, even losing some friends, so it can seem like our life has been stolen from us.

But you are here now & girl, you have more friends who really understand you than you have anywhere else. So anytime you need to talk or you have questions, just grab a cup of coffee & talk away. We're always here. :flowers:

Shelia

 

[dzivko]

I wasn't diagnosed with epilepsy until I was 51, but apparently had it all my life, so I grew up thinking I was crazy, wondering why I couldn't sleep, wondering why I cried all the time. You have a diagnosis. It isn't one you like, but at least you know WHY you are who you are. Make the most of this...and your true friends will come and see you. I have friends who check in with me every day...one even got in her car with a broken leg, came and got me, and we went and sat and just looked at the lake and talked. You are who you are, and there is a medical reason for your sadness, your inability to drive. Open your heart to your friends and let them know how lonely you get. The ones who respond will be the people who are your best friends...I know who mine is!