epilepsy&sz's being told not live ur life

Belinda5000

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Have you ever had someone tell you , you should only go out certain times to get things done. I have people tell me to stay home because I might have a seizure,I'm like big deal because I send away the ambulances all the time.


If I have a seizure in public no big deal.I've had seizures in public since I was a little kid. I know when I need to go to the E/R and that's only if I'm hurt need stitches or worse.


I was told by one person to only go out at certain times when it was heat of the summer, well u can't always do that.
She ended up getting dx'd with epilepsy and drives her car every day to work.

If she hurts herself I don't care it's other people out there she could hit I care about.

She goes to same place I go to just sees a different doctor.:twocents:
 

masterjen

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While no one wants something to control their lives, there is logic to only going out at certain times, or rather not going out at certain times. In the peak of heat on a summer day, it is logical for no one to be outside and if extreme heat is a seizure trigger then of course it makes sense not to be out at those peak times. If medication is making you off-balance and sleepy in the first couple of hours after the dose, then you should plan as best you can to not be out at those times either (I chanced it, and the results were not pretty). If I am post-seizure, I am not going to work out and risk injuring myself or someone else, or go to work at my job where I may risk doing harm to a patient in my clumsy and mind-numb state (if I even manage to make it out of my apartment door).

Everyone has something that controls what they may otherwise want to be doing and when they want to do those things: a husband, kids, a job, school, chronic illnesses . . .

As for your friend continuing to drive, I hope she doesn't see your comment that you don't care if she hurts herself. Perhaps she needs some friendly advice, support and companionship in this often frustrating world of epilepsy.
 

Belinda5000

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The day I had the seizure I had a Dr's appointment. It had been quite a few years since heat&humidity had caused me to have a seizure. I can't always plan when I have appointments. I have to walk to the train station and I can get there in10 minutes.
 

QueenieKP

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You know what you need. You know your triggers. You know your epilepsy. Everyone probably has an opinion but if if you wanted it you would ask.

Somedays I go to the supermarket and just tell my husband shop fast you can get 5 items then we need to get out of here.

Having a seizure at home alone can be as dangerous as having one out and about with people. We live live with risks have epilepsy and we have to manage those risks accordingly and on the whole we probably to a damn fine job.

But anyone with uncontrolled seizures who continues to drive should in my humble opinion be reported to the DVLA or equivalent.

Q
 

Belinda5000

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You know what you need. You know your triggers. You know your epilepsy. Everyone probably has an opinion but if if you wanted it you would ask.

Somedays I go to the supermarket and just tell my husband shop fast you can get 5 items then we need to get out of here.

Having a seizure at home alone can be as dangerous as having one out and about with people. We live live with risks have epilepsy and we have to manage those risks accordingly and on the whole we probably to a damn fine job.

But anyone with uncontrolled seizures who continues to drive should in my humble opinion be reported to the DVLA or equivalent.

Q
Queenie,
I refuse to live were I can't get around.and my husband understands this.
He also has epilepsy just been controlled since 1972 when he had a LTL at N.I.H

people might mean well but I'm not 7 yrs old don't need a sitter like one person told me.

Belinda
 

C0urt

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i kinda want this shirt now because of how often i see the fire tricks

 
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