dealing with change...

i was just wonering, have any of you had seizures afect your life aside from...well, the obvious? i mean really turn it upside down, almost change you as a person?

i was the wild child i had no fear.....most often discribed as 'a little nuts'! My seizures started back when i was arround 15....i have no idea when they started as i hid them and that time of my life is more than just a bit foggy. at first, thinking it was just alcohol withdrawl, they happent only at night/early morning and aside from the usual painful migrane to follow and some weakness, i bounced right back thiking nothing of it. once i'd been busted and taken to hospital and was told it's more than simple withdrawl, i accepted that, but it never affected me. i'd seize at night and go on my merry way straight up untill i hit about 22. that's when they started to become random.

i'd start getting partials during the day, felt like sheer panic. that's not me, i'm not an anxious person. crowds never bothered me, i thrive in strange environments. but it kept going from there. where once i was cliff diving in mexico, i was now worried to get into a pool for fear something would happen. my seizures, TC, became random, no warning and while i was awake. this left me nearly agoraphobic and housebound for 2 years almost ending my marriage.

they eased up and returned to 'normal'....but i didn't. i used to love to wander off on my own, hitchhicking, backpacking traveling at random...parasailing and white river rafting, now....although i've done all those things since the change and change back, i'm not the same. i'm more guarded and fearful. i refused to go snorkling in venezuela this past january with the rest of my friends, and even got a bit worried about swimming with the dolphins. i was a lifeguard for years, i'm not afraid of the water! i'm definetly not afraid of dolphons! lol but still i was paranoid and scared even with my friends arround me, in a life jacket. now...i worry even about taking my dog for a walk alone some days, like something will happen and she'll get lose and get hurt and i won't be able to do anything about it.

i dunno, i think i gave a pretty good example of who i was, how much i love adventure etc.....and now...i'm fearful. i just keep telling myself, like with the dolphins, lol it doesn't matter, so what if i seize, so i'll drown and die, whatever. that's my security blanket....i'll just die....that's a bit weird no?

i kinda figure if i have to live my life locked up and scared on the sidelines, what's the point.

i just don't quite know how to deal with change, this kind of change. it's my worst nightmare. and it just gets deeper as the years pass.

i suppose i still have quite a good life as compared to some. i do love my job....when i'm working! that's another thing, i can't stand time off. i NEED to be busy and the fact that it's not visible, i feel like, people think i'm faking if i take time to settle the clusters etc, like i should be all or nothing. i still travel quite a bit, and i have gone backpaking in europe alone since the whole change/change back- and i did seize there! hooray for nice hostel workers!

i'm rambling....i'm just trying my best to explain....well...i hate change and this is the worst kind. has anyone had to essencially switch their lives arround to accomidate their brains?!! oh- and i did have to change carreers...thankfully i've managed to find 2 i love and one i can do w/o restrictions....so long as of course, i'm not having a bad spell.

wow i didn't mean for this to be this long! it's not even the tip of the iceburg as far as my frustration goes.

Totally in sympathy with you, Jaimes. Epilepsy's an odd condition in some ways.  We're totally OK almost all of the time - and then barely able to function the rest. Throw in the fact that most of us have no obvious trigger for our seizures (is this the case for you too?) and paranoia is understandable. Result, if we're not careful then the epilepsy ends up taking the whole of our lives. We can't let it, we can never surrender to this thing, but thinking positive is a hell of a lot easier said than done.

I went mountain walking a couple of weeks ago. Everything was fine but I was brooding a lot beforehand about what would happen if I had a serious seizure. And when I had a petite mal on my own on a steep hillside, it took about half an hour before I calmed down and told myself it was only a petite mal. And I imagine it's been a lot harder if your hobbies are as dramatic as yours are. Like Mandi says, you've just got to take things slowly and fix on the positive. If you're snorkling with friends, for example, tell yourself that they'll look after you if something goes wrong. Though again, I know, easy to do in theory.

Incidentally, it's understandable getting worried about cliff diving in Mexico. It's actually quite sensible. The same goes for swimming with dolphins. Like Terry Pratchett said, any species that grins all the time is planning something.

Take care,

Andrew

Outside of having to re-mold my career during the time that I was having siezures, I have really not stopped "living my life" due to epilepsy.

During my siezure prone years, i made sure not to try to compete for any jobs that had higher stress levels/or more dedication that I was willing to give.  I had struck a balance with my epilepsy ...

Once I gained control (through the use of meds) I re-adjusted my priorities and looked for higher paying jobs, but to keep that balance, I never do overtime, or bring work home, (work blackberry/cellphones included).

I work to live ... not live to work.  Epilepsy has played a major roll in guilding me to that rule.

As for the outside stuff, well, just incase I have a siezure again, I carry all the gizmos a fisherman needs to wiggle his way back to square one if any such event would happen. 

don