If you didn’t have epilepsy, how would you change your life?

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I am going to write this from the perspective of a caregiver.

I would never say this to Rebecca, and she never reads this site, unless I point out something to her, so....

If she didn't have seizures, I would have five years of my life back. I would been able to use those years for creating my art.

However... I would not have known how important nutrition is for the body to function properly. It might even have saved our lives. I am continually learning, and most likely make the soda drinkers in my life sick to death of hearing me. So what... I am on a mission. I have been told I should be a nutritionist, though my passion is with my art. I am going to combine my belief in what I have learned with my art, and see if I can create some awareness to the subject.

It has opened my eyes to what is happening in our medical community. Something that I use to take for granted. I have found new mentors that are improving the quality of my life too. The challenges are making me a stronger person.

Rebecca would be driving, if it were not for her seizures, and I would not have to be available to take her to places our metro system does not. Yet, I see that as a positive, since it gives me time with her, and in the car is where some interesting conversations take place.

Rebecca is fulfilling the dreams she has for her future. Not being able to drive is not setting her back at all. She continues to go with the flow, and gets stronger each day. Both mentally and physically. Work, school, skating, and a BF keep her quite busy.

So, even with the hardships and setbacks... I see it as a win win. Life's lessons
 
bicycle parts are pricey, i need $60 dollars for a pair of tires
 
If I didn’t have epilepsy and the brain tumor that caused it, I still probably wouldn’t be working full-time because I am a caregiver for my dad who can’t be left alone for more than a few hours at a time, but I would have the energy and ability drive so that maybe I could have a little part-time job or do volunteer work.

I would also go to the occasional movie. I used to be a real film buff, but my mom, who is usually the one who drives me, has very different taste in movies, so, as Basil Fawlty says, that particular avenue of pleasure has been closed off.:D

If I didn’t take Keppra and had more energy, I’d exercise more (I really would, honest:))and be in better shape. And though I believe that life is too short to worry too much about keeping a perfect house, it would be nice to be able to keep the house a little cleaner and more organized.

If nothing else, since I wouldn’t have to rely on others for transportation I would have more “me time”, even if it was just driving around listening to my favorite tunes. Yes, I used to be one of those crazy people you see driving along, bobbing their head to music, singing their lungs out! I love to sing, but I wouldn’t inflict my singing on my worst enemy so I used to get out my inner diva while driving.:rock:
 
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I keep going to think of how to answer this and I'm stumped. I think I'd need a few days to really figure it out. Not having meds/med costs or the driving to worry about, I think my biggest goal would be gaining back emotional freedom. I wouldn't yearn for a long trip or career change or something solid I could put my finger on. If I woke up tomorrow and was told I didn't have E anymore what I would want to (and have to) change most is my outlook. How to gain independance back, how not to be sad, how to feel like the woman I once was while at the same time becoming a newer, stronger me. That's the biggest change I need right now and it won't happen as long as I have this nightmare.
 
Ive just had a thought,if i didnt have e,i would drink more,must be great going out having a few beers and not having to worry about having a seizure the next day.
 
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Well put neil129, I never thought of that one. Having that monkey off the back would be great, as would feeling the same as everyone else at the party. Not counting drinks or times between drinking, and no constant worry for a week after. Aaahhhhh... the days.
 
No more going home early cos your knackerd,no more going home early cos youve forgot your tablets,been able to drink the most potent cocktails..............the list goes on.
 
Aarrrghhh... forgetting your pills. Or, having a 'spur of the moment' night when you just didn't figure you'd need them. I take mine at 11pm - so if I go to a friends at 6 for coffee and woops! it turns into a glass or four of wine I have two choices. Be home by 11 which cuts the fun short or turn the first glass down to begin with, knowing we would have had a riot (and it's always murphy's law that it's a night her hubby's out of town and it could have been a girl's night or something... but 'No, I don't have my pills with me *!@#*!). You're right, the list goes on.
 
I could just breathe again. Exercise without having a seizure. I have had some great experiences, but some times it just gets to be to much. My son wouldn't have seizures either right? He could do any sport he wanted. This question makes me cry.
 
Agreed, this question makes me cry too. I love reading all the posts on this one. The what ifs are endless. I can drive, and I try to never forget I am one seizure (awake) from not driving. Mine are when I am asleep. As far as alcohol, there are so many more ways to recreate than getting sloshed, and our liver will thank us for abstaining.

RobinN: I thought you were a nutritionist! I know you are a great Mom, that is obvious! How lucky your daughter is to have a proactive Mom, so she has the best chance possible for a good quality of life with E. We set aside dreams and aspirations for our kids, and a child with E. requires so much of your time. My (grown) children are E free, so far. Although my son had chronic asthma growing up, we let him be himself, star athlete and all that. We did create a preventive environment at home - but no over protectiveness, non stop video games, and cheese puffs.

Okay, got off the subject. I have the attention span of a gnat-another star quality of E for me. About the nutritional thing, a positive about that is I have become somewhat of a nutrition freak, and my family's eyes glaze over when I talk about it but some are starting to come on board about it.

If I woke up and did not have E:
I would take a tropical vacation, and not worry about getting over heated or dehydrated. A trigger for me. Bleh.
I would stay up late, and get up early and not be frantic about lack of sleep (trigger). Oh and I would drink a pot of coffee!
I could stop talking about all the things I wish I could do w/o E....sigh
 
I would live without fear, i would have my memories back, I would feel whole again (not at the mercy of others) I would ride horses and feel the wind in my hair, I would not be a burden to my husband...:e:
 
The gist: I would have finished my elementary ed degree and have the job I always wanted of teaching a bunch of 2nd or 3rd graders. I would also be writing more, and likely be complaining about the rising cost of gasoline and the idiot drivers in this and surrounding cities.
 
I don't think anything would be any different except that I wouldn't have to take meds and I would be able to drive and school would have been a lot easier...The money I spend on medication and such would just go to buying more movies.

I've had it for so long that I can't imagine not having it.
 
I don't really know yet. Travelling, working on safety in the schools, probrobly bringing in funds where they are needed. More often then I do.Then travel again.
 
I'd still be a river guide and working as an arborist and I'd be pursuing a career in police work instead of plant science.

Maybe I'd have a boyfriend... but on second thought, probably not.

I'm pretty sure I wouldn't be so reluctant to leave the house anymore.
 
The only way it would change my life....I'd be able to go to grocery store on my own or walk to work!
 
I'll start with the bad stuff:
If I didn't have Epilepsy I would (most likely) have gotten a MUCH higher GPA in high school, graduated with honors, kept a lot of my friends, got my driver's license at 16. I may have had a much better memory and better focus. I'd save a lot of money on meds.
Good stuff:
If I didn't have epilepsy:
I wouldn't have as good stories to tell ;p, I wouldn't have my job, I wouldn't have this experience to make me a stronger person, I wouldn't have learned to be less ignorant and close minded, I wouldn't have given 150% to still graduate with my class. I wouldn't have met the best doctor in the world, I wouln't be as close to my mom as I am now.I may have only graduated with a 1.9GPA and very few friends, but I graduated with my class, and that is the biggest accomplishment of my life!

Ironically, I think my seizure disorder has changed me for the better!
 
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I would have alot more money and maybe I could travel....something I have always wanted to do. Also if I didn't have Epilepsy maybe I could finally get a good night sleep.
 
The only real 2 things that bother me about the E... who knows if and when I'll drive again and I feel constantly befuddled all the time. And I mean literally, from when I wake up with my 2 year old, until its bed time.
But in all honesty, for me it couldn't have "happened" at a better time. I just graduated (end of September) with my second associate's degree. I have toyed in the past with furthering my education, I just haven't done it I've been "too busy." Well... I'm thinking now is the time... I can't do much of anything else "useful" right now, so why not just do it. But alas, need to pick a school. ;)
 
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