How Do You Deal with the limitations of epilepsy?

[B1GGregNZ]

I've had Epilepsy since i was 10 years old but wasn't diagnosed until i was 16.
I was in denial until about the age of 23. Since been diagnosed i've found it hard to be motivated and find any hobbies that i enjoy. I once had a list of things i wanted to do in life but that list is getting shorter. This list included things like Scuba Diving, Sky Diving.

I had no idea people with Epilepsy had been redflagged in these industries.

I haven't been able to obtain a drivers licence and thus find a stable job.

What i wanted to know is what do you do deal with limitations of epilepsy in your life?

 

[valeriedl]

Is it illegal to do these things? I read a little on the internet and all I really found is that it's not suggested that you do these things. Companies may have you sign some sort of consent form saying that if you were to have a seizure while doing them they are not responsible for what might happen.

How often do you have seizures and do you have any type of aura before one? I usually have around 5 seizures a month with no aura so I don't think I'll feel comfortable doing them. I'd still do them if I really wanted to though but I know my family wouldn't be happy about it. If you have auras before seizures then if you were scuba diving you could probably come above water before it comes on. I'd make sure you don't go alone so there is someone there to help you if you needed it. Sky diving is a little different though because you can't land before you have it.

Not driving is hard. Do you live near public transportation? If you were to find a job is there anyone who you could get rides to and from work from? A person who works at the same place or close to it for example. A woman who my husband works with can't drive so he'll take her if they are working the same shift. A good bit of times if you offer someone gas money for taking you places they will.

Don't feel like you have to live in a cage. You may have to do a little bit of looking around but you can do the same things as everyone else.

 

[Nakamova]

My brother (who scuba-dives) went on a trip where the Dive Captain had epilepsy, so it's might not be entirely off the table for you. For myself, even though my seizures are well-controlled, I wouldn't be comfortable with scuba-diving (though that may have been the case even before epilepsy arrived in my life). But I like snorkeling and ziplining -- not quite the same as scuba diving and skydiving, but enjoyable all the same....

In some places it can be tough to get a job even if you are able to drive. I work at home, self-employed -- is that an option for you

 

[Sabbo]

I know how you feel. I've always had simple partials, which aren't that big a problem. About 18 or 19 years ago, I suddenly started having complex partials, too. That was a real bummer. I had recently completed my BS degree, with a double major--those seizures made it useless.
I did try to work, but after 2 VERY scary incidents, I said NO WAY. One morning, I was at the train station, & the next thing I know , I'm 'coming to' at the ER. I'd had a complex partial at the station--another person caught me before I could fall into the tracks. Another time, I exited my office building, & collapsed on the sidewalk from a seizure. I 'came to' at the ER again.
. I've also given up my hobby of cooking. I have burned myself at least 6 times--second & third degree.

 

[CQ:)]

I turned 40 in September & my parents wanted to do something different for both me as it was a big year. My best friend who id been friends with since high school is only a week older so my parents were also treating her aswell.

I wanted to do 2 things either go on a helicopter flight or tandom skydive. I wasn't sure if my neuro would like the idea of me tandom skydiving as my seizures were a little over the place. My best friend said she wasnt jumping out of a plane unless it was on fire lol and wed have to drive about 40 mins to go to the place that did tandom sky diving so that was out.
So we went on a helicopter flight from our town to the weir (like a huge lake) and back. My Dad also had it on his bucket list so he came along as well lol.
It was amazing & something you'll never forget.

I currently only take partial seizures which are every so often but it's enough to restrict me from driving. Even if I was able to drive I wouldnt as ive never had an interest in diriving and like walking everywhere, I live in a town with good public transport so if I need to I get a bus & I catch a train to the city to see my neuro.

I work in an office, where I work now is 50 - 60 mins walk from home. Its summer here in Australia so pretty warm still so I get a bus to work in the morning so Im not hot & sticky when I get to work. I then walk home so Im still getting my exercise, that way if I need to call into the shops to grab anything or do any errands I can after work.

 

[Fedup]

I have had epilepsy since I was a baby, its amazing the things you cannot do because your epilepsy will not let you. Wrong. You might not be able to Scuba Diving or go Sky Diving for whatever reason but you will never space walk either? or will you? it is totally up to you. Granted there are things each of us cannot do due to a fear of how it could effect us and our epilepsy but never let the epilepsy stop you doing anything the final say is your and after you weigh up the pro's and cons you will come to the right decision, not a decision because the epilepsy said so.

 

[Nakamova]

:agree:
I know it's easy (and not unreasonable) to indulge in a little "stinking thinking" every now and then. But in the long you're better off considering the things that you can do now and are capable of doing in the future. Celebrate your adaptability and capacity to learn.

 

[Porkette]

Hi BigGreg,

I started having absence seizures at 10 and then the complex partial seizures started 2 yrs. later. I've never been able to drive in my life and I've had epilepsy for 46 yrs. now.
I got into writing poetry and short stories I had one poem published a few yrs. ago. I like to study neurology and see how different meds along with different surgeries or treatments can stop or reduce seizures. What I found really interesting was getting into music and then later on getting into ham radio where I could talk to people all over the world, along with being able to make phone calls over the radio and talking to the astronauts when they had the shuttle going up and also talking to them on the space station. I can also get pictures from them through their radios which comes into my ham radio then I have a cable connected to the computer and it will print out the pictures on the computer monitor. It's a lot of fun. I've made friends from all over the world and what I like about ham radio is it can be a bunch of people talking from all over the place and not just a 2 way conversation. Here's wishing you well and May God Bless You!

Sue

 

[resaebiunne]

Some things are dangerous, yes, but I choose not to do them not because of my epilepsy, I just have no interest in doing them.

I've had epilepsy since I was 12 and the only reason I don't drive now is because the law says I can't drive, thanks to a nutcase neurologist. Well, okay, it's more than that, but I've not had a tonic-clonic seizure in 13 months so I SHOULD be allowed to have my drivers license back now. I've changed doctors a long time ago but I've not tried to get a drivers license either, so you can see how this works.

 

[Topcat]

I don't know know if it's better or worst to have epilepsy when one is younger (basically born with it).
I did have it until after age 40 (mine was caused by a closed head injury).
I sure miss things I did.
Some of the things I found a way of doing amazed even myself. I had never taken public transportation. But one day I just walked to a bus stop and got on the next bus.

How do I cope? I do because I have to. I have no option. I just DO.

 

[Jeanbean]

Resaebiunne,
Hi I don't know your story but I too am without a license. I have had seizures since age 12 tonic clonic (grand mal) and had 3 accidents not hurting anybody except my car. I was really in denial, saying I've been a year without my license I should have it back due to no seizures, until the third accident when I hit a truck going pretty slow since my foot fell off of the gas pedal. He was not hurt at all and his truck had a little damage. My car was totaled. I realized how selfish I was since I have no warning prior to the seizure. My seizures are strange-a few a year complex partial to tonic clonic-generalized with no warning.
I stopped driving after this and found public transportation, Uber, and family and friends to help out. It is hard but I think how I could have killed someone or really injured them much less myself. I just wanted to pass on my experience. Thank you, Jeanne