Help....Constantly living in fear these days

[Jun]

Usually my seizures have been occurring once a month or so for the most part. Of course no seizure is the ideal situation, but the next best thing is having it somewhere private/ where I feel comfortable (alone). Worst situation is having one in public, ambulances called etc, which is totally not necessary for me. An over reaction and I guess "liability" for anyone who doesn't call.

It's almost hitting the two month mark, and I'm constantly thinking about my mental status literally....thinking about auras and etc...getting me all anxious, uneasy, restless.....very slowly making me go crazy, insane...leading me to always want to be alone, because feels like when my brain gets happy by even the smallest indulgence (like a good time with friends), it's those times I feel most vulnerable and having headaches, which makes it more likely I might have a seizure.

Would truly love to know how all of you are able to live day by day without fear of seizures.

 

[valeriedl]

I don't have any public transportation where I live so any time I go out there is someone with me. However depending where we go, like the mall or some stores, they aren't always right by my side at all times.

I don't know what type of seizures you have but generally unless you aren't having a TC and are shaking around people don't know what you are having is a seizure. And yes there's a good chance that an ambulance will be called if you aren't acting right, even if you don't think it needs to be. I've had seizures at home, not just TC, and my parents have called one when it hasn't been needed. Many times I'm out of the seizure by the time it gets there. Ambulances are probably called for several different reasons, not just seizures because people get scared and don't know what to do. They just want to be sure they are doing the right thing to be safe.

If you feel like you are going to have a seizure then go somewhere that you'd feel ok, a restroom maybe?

I've never been afraid of having a seizure in public. I know I'm going to have them and I can't pick the perfect place to have it if I do.

 

[Belinda5000]

I never know when I might have a seizure I don't have a aura I went a month sz free; I have sz's in public all the time and when ambulances are called u can refuse them. I have finally gotten a medic alert bracelet that says no MRI pacemaker allergic iodine contrast Epilepsy asthma.

 

[Howll]

Every day it's always at the back of my mind. I'm the same as you in not wanting to have one in public. Luckily, apart from my first ever one which was at school, they never have been and I have always had a long warning so I've managed to get myself some place else. However, I have daily anxiety because of my seizures. Even though they rarely happen, it always feels like I'm asking myself "is today the day?". I automatically relate to any "strange" feeling as a seizure and I find myself almost looking for auras, like one of mine is Deja vu, and so I often question whether I've been somewhere before even though I know I have and I'm just remembering it.
I haven't let it stop me doing anything as such, however I do tend to go out with friends less. I feel safer going out with my partner, I guess I use him as a safety blanket and I know if a seizure happened with him around that I wouldn't be embarrassed. With anyone else, I worry how they'd react and wouldn't want to Inconvinience them or ruin their day.

I've got better at controlling the anxiety, I started meditating and using mindful strategies in my everyday life, if I felt myself going into a whole I'll chuck a meditation app on my phone and try and zone out. For some reason, it's travelling on the bus that gets me the most, I just feel like if I had a seizure there'd be a big commotion and I'd piss everyone off for making them late or whatever if they had to stop, so when I'm on a bus I listen to Headspace or Mindshift and just try and roll with it.

 

[seagull]

you going have to come to terms with it and plot a course in life or you won't have a life.
What will be will be You just likely have sz in bed wrapped up in cotton wool,So why not go out there enjoy life.I did back packing Australia NZ America first time in my life when I was 57 and yes I did have sz in each country but I found people much same world over nice and doctors money making cooks mainly in America they wanted cash and a lot of it but that beside point.I met people with diabetes hanging on by threads other e people ,we all took a chance and that is life you have take a chance

 

[Frink]

I never know when my next seizure will happen, could be today, could be tomorrow, might not happen until next year, heck I could drop dead from a heart attack tonight and never seize again, we just never know.

What I do know is right now, this minute, I am not seizing, so I am not worrying about when I will seize again, all any of us has is right now, we only live now, why spend the only time we have worrying about things beyond our control?

 

[acshuman]

Accepting Your E!!!

Jun,
The first and most important thing you have to do is accept the fact that your E is a part of your life. Until you accept this fact you are NOT going to be able to have a life! Seagull is very right when she said that you need to take the time to set a course for your life! If you continue to let your E control your feelings you are NOT going to have any positive feelings.
It may take time to completely accept the things that may be part of your life because of the E, but this is something that you HAVE to do!
Your feeling embarrassed when you have a seizure in a public place is something that you have to overcome. If you think about it, 'Does a person a person who has a reaction to high sugar levels in their blood or a person who had an asthma attack feel ashamed if this happens when they are in a public place?'. NO!!!! These conditions are something that seem to have been 'accepted' by people!
E is no different. E is a medical condition NOT a mental problem!
If people are going to be bothered by a seizure, they are the ones with a problem, NOT YOU! This is why you have to learn to accept your E as a part of your life. If you can't accept your E, how can you expect other people to accept it?
If you show these people that you are NOT bothered by your E, these people are going to see that you are a strong person. When they see this, they are going to realize that you ARE STRONGER than them and learn to accept you as a result! :bigsmile:

ACsHuman

 

[Jun]

Thank you all very much for taking the time to comment!

For me, its not really fear of embarrassment thats taking over my mind. Its more fear of what will happen that will affect my livelihood.

Example: Today I was really not feeling too good, so I ended up going home and working. If I stressed myself at work, it may have led to a seizure...maybe not, but if it did happen at work and everyone noticed, ambulances will be called and etc etc etc, and could indirectly cost me my job. And yes, Im perfectly aware that I cannot be fired because of my epilepsy, but there are always other reasons they can come up with.

In my private life, sure im less fearful of having a seizure, such as when Im with my friends or going shopping, but that fear still exists. What if the ambulance comes and blah blah blah....ultimately leading me to not be able to do something Im perfectly capable of doing (ie: take a wild example and say being able to living alone)....or maybe the store I had the seizure at woudn't let me enter again unless im accompanied by a care giver...and examples can go on.

So embarrassment is not really what Im afraid of here....

 

[acshuman]

Your Fear

Jun,
One of the worst thing that can happen to you is that if you keep worrying about these things you are going to bring more STRESS upon yourself. The last thing that you need is stress!
I had a problem with employers during my working career. The most important thing for me to do at that time was to NOT worry about my job. I had many different jobs over the years.
I also saw some of the people who were supposed to be family members who felt that my having these many jobs was showing how I didn't care about my employment. I also found out that it was impossible to get these same people to realize that it hadn't been my choice to leave the jobs that I lost. I was able to accept this as a fact that I wasn't going to let bother me. I felt that if these people and the employers were going to have negative thoughts about me, THEY were the problem NOT me!
You may have some people like this in your life. You have to refuse to let people like this bother you. You have to make sure that YOU satisfy yourself first, then them!
If these people don't understand why something is happening in your life, this lack of understanding is their problem NOT yours!

ACsHuman

 

[seagull]

Or another way of putting it get a grip hunny worse things can happen.I mean I have nagging feeling but you got live.People in all sorts different lives just go for it.I did my first bungee and last in NZ just as I was gearing up I thought holy shit what happens if I sz on my jump then thought I be upside down so won't choke.
Hunny 2weeks of coming home discovered I got breast cancer very defining moment and every lump I saw after that I thought was cancer for three years I spent nearly invalid just incase and what waste of my time.I now think sweet FA I can do I not going make my body my prison.You must not do that if you do you are asking for whole lot of problems with mental health issues..
Chances are high you get your driving licence when they sure everything ok in uk I think it 2years but in States think it less.

 

[Porkette]

Hi Jun,
When I first got epilepsy I felt a lot like you do but as time went on I learned to accept the fact that I would have seizures any place and anytime. I found being open with my co workers, family and friends about my epilepsy was the best thing I could have done for myself because everyone knew what was happening if I had a seizure. I work in public school and I'm around 500 or more people a day (students and staff) when I've had seizures at school a lot of people just ignore the fact that I had a seizure and go their own way but once in awhile a person may ask me if I'm okay. What really made me wake up and realize my seizures were no big thing is when I started working with students who were in wheelchairs and knew they could never walk and family that had cancer and it was just a matter of time before they would be gone. At least with the epilepsy the seizures aren't happening all the time and I can lead a everyday normal life and so can you. I wish you only the best of luck and May God Bless You!

Sue

 

[seagull]

Jun,
One of the worst thing that can happen to you is that if you keep worrying about these things you are going to bring more STRESS upon yourself. The last thing that you need is stress!
I had a problem with employers during my working career. The most important thing for me to do at that time was to NOT worry about my job. I had many different jobs over the years.
I also saw some of the people who were supposed to be family members who felt that my having these many jobs was showing how I didn't care about my employment. I also found out that it was impossible to get these same people to realize that it hadn't been my choice to leave the jobs that I lost. I was able to accept this as a fact that I wasn't going to let bother me. I felt that if these people and the employers were going to have negative thoughts about me, THEY were the problem NOT me!
You may have some people like this in your life. You have to refuse to let people like this bother you. You have to make sure that YOU satisfy yourself first, then them!
If these people don't understand why something is happening in your life, this lack of understanding is their problem NOT yours!

ACsHuman

I got family like that,hurts but as you say they got the problem family can be very unforgiving and hard, very people who should support you.