The price we pay to have fun!!!!!!

[Crazy Monkey]

The Stiff Little Fingers concert I went to last night was awesome!!!!

Why is it, when you have epilepsy there is always a downside to everything that is fun??

Today I have suffered badly with strong and powerful absence seizures, they have been doing my head in (literally) at one point I was picking myself up off the stairs at work, I am hoping it wasn't a drop seizure, but I remember nothing and nobody saw me (thank goodness) and luckily I was walking up the stairs at the time, if I was walking down it would have been a different story.

I just wanted to be like all of the others at the concert so I drank too much, jumped too much, slept and ate too little and had to watch some very bright white lights as well as a few strobes mixed in. Today I have very little voice and I am only now starting to regain my hearing.

I know I shouldn't moan because it was my own doing and I was putting myself in a trigger minefield, but I just wanted to be like the other concert goers.

Was it worth it?? YES IT WAS and I will probably be doing exactly the same thing next year.

Its just not fair how much we all have to suffer after doing certain activities just for the sake of wanting to have some fun.

 

[darkmarkshark]

I find it difficult to find an activity to enjoy

Movies: Can't be. The ones today are all "impress the audience with needless flashes"

Sports: out of the question

Miniature golf: Possibly, but what are the odds that I'd have the energy to finish the course. most days not so great.

Hiking: not enough energy and the doctor has forbidden it anyway. Same with bike riding.

Amusement parks: never make it through the day. The lights on the merry-go-round would probably give me a seizure, same with the haunted houses, and I'm afraid of heights even if the changes in the roller coasters were safe for me

World Travel: Always my interest, but unfortunately it requires money and I can't work

Museums/zoos -possibly as long as I had plenty of time to rest in between. But how many times can you visit before getting bored out of your mind by seeing the same stuff

Maybe we should have a thread on what we can do. Then people who get cabin fever can get ideas. There are things I can do at home, but what I really want to do is go out someplace. And you must have cabin fever far stronger than I do to want to do all that and still think it was worth it.

 

[Belinda5000]

I find myself reading a lot of books.

If I get into big crowds that'll send me into a sz.

I won't even go into the heat& humidity once a year for my DH family reunion they have 7-4 and I don't care to have a seizure it's always outside.

Fun what's that unless my DH takes me somewere E/R not included.

Belinda

 

[brain]

I can relate having being tied down with restrictions
too, but sometimes you're stuck with the option of
like you implied - "is it worth it?"

I've personally done some things that I've been
restricted from, but of course, I'm not alone and
I DO take the extra measures and precautions when
doing so; like for example - during those back-to-back
Hurricanes we had, the roof sustained some minor
damages, but the repairs were urgent and cannot
wait, and of course, I'm the only person who can do
such repairs - going up on the roof, but I was always
under supervision by my son and his friends below.

There are times when one has "not much of a choice",
when situations arises like these.

Then there are risk factors in regards to having fun,
if it's a once in a lifetime experience, and your beloved
"idol rock star" is on a tour in your town, and you know
it's going to possibility may trigger a seizure, but is it
going to be worth it? A seizure is but for a moment,
but then a concert like this only - who knows, may never
come again, for such things do get postponed, schedule
changed, et cetera.

But then there's also "stupidity factor" where it's NOT
WORTH IT! Even for a "normal human being" - which
they call it the "Extreme Sports" or "Extreme Something".
Normal people get killed, injured seriously - even critically,
and stupid things happen and I don't even need to
ramble on any further than this. And for a person with
Epilepsy to be involved ... I know one thing, people
with Epilepsy are a lot smarter than that!

:tup:

 

[Cint]

The Stiff Little Fingers concert I went to last night was awesome!!!!



I just wanted to be like all of the others at the concert so I drank too much, jumped too much, slept and ate too little and had to watch some very bright white lights as well as a few strobes mixed in. Today I have very little voice and I am only now starting to regain my hearing.

I know I shouldn't moan because it was my own doing and I was putting myself in a trigger minefield, but I just wanted to be like the other concert goers.

Was it worth it?? YES IT WAS and I will probably be doing exactly the same thing next year.

Its just not fair how much we all have to suffer after doing certain activities just for the sake of wanting to have some fun.

Why did you want to be just like the other concert goers by drinking too much, sleeping too little, etc? You can go to concerts and still enjoy yourself without putting yourself in the "minefield".

Back in Sept, my sis and I went to an outdoor Bob Dylan (ok, I'm giving away my age) concert in Aspen. Eventually, a bunch of drunks and people smoking pot were surrounding us. Several young men even approached us an offered us some dope, but we refused. I did enjoy the outdoors & the concert,(not the smoke, tho) but we didn't have to drink alcohol or smoke dope, just cause everyone else was doing it.

People can respect me & my boundaries, too. If I say NO, I don't want your alcohol or dope, and they don't like it, then they'll have to find someone else to pal around with! I'm the one who has to deal with the agony and aftermath of these so called pleasures.

Cindy

 

[stilldancing_98]

Sounds like a blast. I wish I could of been there!i love stuff like that.

 

[Crazy Monkey]

Why did you want to be just like the other concert goers by drinking too much, sleeping too little, etc? You can go to concerts and still enjoy yourself without putting yourself in the "minefield".
Cindy

Don't get me wrong I am not some alcohol driven nutter and one thing I will never try are drugs, in fact I have never been drunk not even after Sunday, I just wanted to blend in with the crowd rather then sticking out like a sore thumb (which is something I feel like I do) SLF concerts are a bit of a boozey, boystrous affair and not for the faint hearted, just for once it would have been nice to do as all the others do and not have to worry about the effects of a bit of self indulgence. (other then a hangover)

You are right, you don't have to do all of these things to enjoy a concert, but I done them because I wanted too, coz it would be fun, there was no peer pressure. It was purely me putting myself into this situation because I desired it and I then had to face the consequences.

Sorry Cindy it is difficult to explain what I am trying to say, but I have done my best - it would be nice just to be able to drop my guard now and again.

 

[kayaker4157]

I can totally relate with you, crazy monkey. Sometimes it's so frustrating trying to balance just wanting to go out and have a good time like the rest of your friends, with the price that you know that you're most likely going to have to pay the next day. Most of the people I hang out with respect my minimal drink limit, but that usually means that I'm the designated driver (when I can drive). Sometimes it's so hard watching them all have a great time and feeling like a fly on the wall, that I just decide it's easier not to go. Not the greatest solution, I know, but I haven't figured out a better one yet. I'm open to suggestions... .

And it goes for every day things that some people don't understand too no matter how you try to explain it to them (not anyone on this site, but more so other people I know) and it doesn't even involve over indulging. Something like just trying to go on a haunted hayride where there are strobe lights and needing to have your friends tell you when to duck/cover your eyes if the lights are coming up (so you miss most of the displays). Or something as simple as being out at a bowling alley and having to leave when the "cosmic bowling" with the flashing lights starts at 8:00 on a friday night. Your frustratation is definitely well understood and shared here.

 

[stilldancing_98]

I am 43 now. I do what I want to do. But I have good common sense. I have a son to think of . But I go out and party sometimes when he is with his Dad. I take care of myself though.It's a balance.

 

[Cint]

Crazy Monkey,

Yea, it would be nice to drop your guard once in a while. I know it is frustrating.

I hadn't gone to a live concert like that in years, because I was so afraid of having a a seizure in public. But I finally learned to swallow my pride and go out and enjoy myself, too, and if I seized in public, well so be it. I'd be the one suffering the consequences. I've been through hell and back with the treatments for seizures (brain surgery, numerous meds, VNS) and nothing seems to work 100% for me, so I am going to do what I want now! But I do know my limits, too, and don't overdo it.

 

[alivenwell]

Why do normal people want to get drunk? It gives them an excuse to let go of their inhibitions. Frankly, what some people experience when their drunk may be what we experience when we have a seizure (passing out or feeling different). I don't drink...never will. I don't smoke...never will.

I wake up with a hangover everyday without the major party the prior night.

 

[Crazy Monkey]

Thanks for all of your replies, you all have some interesting views on this subject!!!!

I think that as 'Brain' mentioned, you need to weigh up the stupidy factor before doing something, but if the activity is 'worth it' for personal reasons or requirements then to go about doing it in the safest way possible.

Kayaker - We sound like we have similar views, unlike you, I cannot even be the designated driver, but it is nice to have a few social drinks on a night out with your friends, though like I mentioned previous I have never been to the point of being drunk. BUT try not to let E beat you by staying in, I am sure there must be something you can do.

Alivenwell - I have no idea why non-epileptics enjoy getting drunk, as soon as I start to feel slightly queezey due to alcohol I stop drinking and switch to soft drinks. Drinking alcohol on a regular basis is a waste of time and money, my ex BF goes out drinking every night and to me its pointless he is just drinking his life away and will probably end up with liver failure. I just like a session now and again.

I think people with epilepsy have far more built in common sense then non-epileptics because we have to watch out for dangers 100 times more, we are far more aware of our surroundings and try to keep ourselves safer.

As I said earlier - It would be nice just for once to be able to drop my guard and have a night out without my epilepsy and without wondering what my seizures are going to be like that night/next day.

 

[stilldancing_98]

Well last night a had a couple of glasses of white wine at home with friends. It got me tipsy.My son was at his Dad's . I had a great time.