Family Support

Sweetp

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Hi Everyone, I just wanted to let you know that I posted as seetseet since I have been here, and I forgot my password, but also successfully locked myself out of my email- fail.
I just need some ideas /advice about family support- perhaps gaining it and trying to get them to understand. I realise it is a long shot.
I might have let you guys know that we will probably live in different apartments but stay a couple or possibly separate with my husband- long story- but it is because of his PTSD- it is affecting all of us.
I do not feel as though he is leaving me or vice versa.
But of course 50% of our friends and family think he is leaving me when he should be taking care of me. The other 50% think that I don't want to be a mother and I am bailing on my kids with the boys living with him (they are 5&7 and we realise that for them to see a seizure is like seeing their mother die, which has also been supported by people who work with children- that is why both of us don't agree with this "they'll get used to it" theory)
So, with my blurb done with, the advice I require is what and how I should go about my immediate family- well my father to be exact.
Ever since I have told him our "plan" he has been saying that my husband should get professional help and that he can and should "get used to it".
Ok, that is a point but he as a counselor should understand PTSD especially since his partner has it. It isn't something that is curable.
Currently I am living with my two boys at my father's place as we are waiting for my husband to sell our house (in a different country). The idea about us living here till he arrives, is so my father can be here for the kids and me if something happens. Which in theory should happen because he has been saying what an "everyday" epilepsy is and anyone can handle it.
So it started on Friday afternoon and went all Saturday to Sunday morning.
I had this awful "too much coffee" feeling- this constant fear, everything was scattered - I had a plan of what I needed to do for Saturday, with my boys and my dad driving (it was go to optometrist to pick up my glasses, have my mobile phone checked in the.same shopping centre and go to my brother's place for lunch).
The whole day seemed like the biggest mission because I was scared, it felt like watching a movie, and I was constantly holding onto things so I could have the sense of "physically" feeling something to keep me here. I have had it before, but it wasn't for this long and plus I was at home and I had the safety of sitting on a couch so just incase I has a proper seizure I wouldn't smash myself. So the whole day was awful.
I tried to tell my dad twice what I was feeling (I have told him a number of times that it isn't just tonic clonic seizures that exist).
I will give him that I didn't say that this might be due to epilepsy.
The first time I told him was in the car, and I told him I felt awful, he asked how (as im emotionally or physically) I said Physically like when you have had too much coffee- and he went into a blurb about the one time he had coffee and that's why he only drinks one a day. I was freaking out, and I told him I don't drink coffee and haven't in almost a year, and that was it.
The Second time that day, he was sitting next to me, and I told him that I was reeeally out of it. He didn't ask anything, he actually stood up straight away and sat in another seat.
Why?
What do I do?
Who do I tell?
Or is just normal even coming from a parent who is is a counsellor- and who thinks epilepsy is a simple thing?
 

Porkette

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Hi Sweetp,

Welcome to the forum! When I was a kid I started having seizures and I would get a warning I was going to have a seizure
then my parents noticed it and that's when they kept me home and wouldn't let me do a darn thing with my friends. That was
the big mistake because it made things harder for me as if others wouldn't accept me. I later went to bordering school when I
was in my teens and became very independent and that was the best thing I ever did. I would go out and go to concerts with
my friends and be back at 2 am riding the trains back and forth with no adults.
Years later I started working in public school as a teacher aide in special education and had brain surgery to reduce my seizures.
I tell the students and staff about my seizures and I've had seizures in the classroom many times over the yrs. The main thing
I'm trying to get across is don't let anyone or anything stop you because you have epilepsy. I look at Elton John whose had
epilepsy for many yrs. not to mention other famous stars and people. If people can't accept someone because they have epilepsy
that's their problem. I've found being very open about my seizures was the best thing I ever did. Don't let it get the best of
you and get out their and enjoy your life like others do. I've had seizures in stores, and many public places and I keep going
no matter what. I wish you the best of luck and May God Bless You!

Sue
 

Army Vet

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Hi Sweetp,

Yeah, the first impression I get from what you have written is that your dad is in denial...

"What?!? My child has seizures?!? No! No! That can't be! And on top of that her husband has 'PTSD'? What is that?!?"

He won't accept the true problems that are there and therefore he isn't being supportive. As you said, he got up and moved chairs.

Translation: He didn't want to hear it (nor deal with it), that his "perfect" child he raised could have ANYTHING wrong with her. Whether it being you having epilepsy or marring a man with PTSD. No, his child is perfect... Hence my "denial" theory. Plus, with him being a counsellor, he's used to hearing and dealing with other people's problems. But his own family having ANY problems? How dare you even think that?! Also, he can leave at the end of the day and not talk to the people for 16+ hours (ie he doesn't have to deal with it anymore). Plus, on top of that, he personally has no control over the situation (ie he can't solve the epilepsy or the PTSD). So what's the easiest way out? Just deny it and stay as far away as possible! (ie not look at it nor hear it, hence leaving his seat).

As for dealing with it (much easier said than done), I would have a serious sit-down talk with him and ask him, "Are you seriously THAT insecure about my epilepsy that you have to change seats? Do you really think I enjoy this? Do you really think I'm doing this on purpose?"

If he doesn't answer or gives you some talk about something else, then put him in his place. Play a little "reverse psychology" on him and tell him "that you'll make sure to 'stay out of his way' and try to not sit next to him next time!" Or go out of your way to remind him not to sit close to you as he'll have to get up again in the very near future. Again, that's how "I" would play it, but I don't have the full story/history between the two of you.

Point being, as Sue said, our situation is already bad enough. Don't allow your dad to make you feel uncomfortable (guilty) about something you have ZERO control over and are just trying to live with and communicate to him about. Feel strong and good enough to call him out (ie "Okay dad, how do I stop it? Because I'm sure as heck not doing it on purpose.")
 

Sweetp

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Thanks so much for both of your replies.
But I don't get if so far he has been saying that epilepsy is so easy and there is no way that it can cause the end ofmy marriage and PTSD for my husband, trauma for my kids, me losing my driver's license (even with driving he said I should drive if I want to, because the majority of the time "I am not during a seizure")!!!
But still he has been the one whohas said it is so simple, ans it feels like now when I actually need his support he is "ignoring" me...
😪
I don't know if I should say something, if yes, what?
Or I should just let it go, because it is something he will never understand?
Please share experience and advice 😪😪
 

Fedup

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But I don't get if so far he has been saying that epilepsy is so easy and there is no way that it can cause the end ofmy marriage and PTSD for my husband, trauma for my kids, me losing my driver's license (even with driving he said I should drive if I want to, because the majority of the time "I am not during a seizure")!!!
But still he has been the one whohas said it is so simple, ans it feels like now when I actually need his support he is "ignoring" me...
😪
I don't know if I should say something, if yes, what?
Or I should just let it go, because it is something he will never understand?
Please share experience and advice 😪😪
Well epilepsy is so easy to live with or at lest that is what anybody who does not have epilepsy will tell you, am I being a smartalic and making fun of what I just said, absolutely yes. Why, because I have heard this so often from people, so have most people on hear if we are honest, said in one way or the other and it is such a stupid thing to say, but wait, stop and think a minuet imagine if you were in their place, you know absolutely nothing about epilepsy, never seen a seizure and then you meet somebody who is epileptic. Remember you know nothing, they look perfectly healthy "there is nothing wrong with them you think" and then you hear that famous line "epilepsy is so easy and at lest it does not affect your life" and you think to yourself "you live with it if you are so sure" you do not want to argue so try to explain what it limits you doing or what you are afraid of doing just in case you get a seizure and the consequences are very serious for you. Yes it can effect your marriage and it does not matter if your husband has other medical problems or not, anyway that is privet and nobody else's business. and yes it can have a huge affect on young children and they have to be considered big time.

As for the driving, do they want you to kill somebody or worse to kill a child, there is no way you could live with this, ok you have not got a seizure yet but the chance that could happen is something nobody can predict, its like saying its ok for somebody to drive home after being at the pub and having a few scoops (i mean a few drinks, I am Irish) if they have an accident and kill somebody it does not matter, he drove home before and nothing happened. So like Porkette and Army Vet said you need to sit down and talk about all this and no way is it going to be easy and no way will they want to hear what you are saying, you will probably be wrong in parts and there is no way one time is going to solve this, not even for me.
Believe it or not your father is actually trying to support you not ignore you, granted in the wrong way but that is because HIS PERFECT LITTLE GIRL is perfect and there is nothing wrong. So trying to explain is not going to be easy and it will make you angry but you have to keep at it. All That I can honestly do is wish you the best of luck and remember he really is there for you just in denial.



 

Army Vet

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Thanks so much for both of your replies.
But I don't get if so far he has been saying that epilepsy is so easy and there is no way that it can cause the end ofmy marriage and PTSD for my husband, trauma for my kids, me losing my driver's license (even with driving he said I should drive if I want to, because the majority of the time "I am not during a seizure")!!!
But still he has been the one whohas said it is so simple, ans it feels like now when I actually need his support he is "ignoring" me...
😪
I don't know if I should say something, if yes, what?
Or I should just let it go, because it is something he will never understand?
Please share experience and advice 😪😪
Hi Sweetp,

This kinda goes back to my favorite phrase I said over and over again while in the army:

"You don't realize what you have until you don't have it anymore."

In the army, I learned to appreciate something as simple as WATER! I saw a water buffalo off in the distance (while on a 10-mile, 50+ pound ruck march, after being in the woods for three days) and I saw it and PRAYED that there was SOMETHING in it. I was ready to drink RUSTY water, I was so thirsty, I just hoped it had SOMETHING! Well not only did it have water, but it was CLEAN ICED, COLD water! Before the military, I drank anything EXCPET water. Then I grew appreciative of it.

Going back to my phrase, a lot of people (myself included) grow an entitlement to EVERYTHING. Something as simple as driving, we expect to do it our whole lives and it is such a MARVELOUS thing to be able to do. The freedoms it allows us to go do whatever we want, whenever we want to. However, epilepsy throws a HUGE monkey wrench in our engines (pun intended). Also, driving is a privilege, not a right.

Then that is just the first domino to fall which starts to make others fall... Getting to and from work/school. Going to the mall/store. Going to the movies. Going out anywhere at all and just getting away from everything! (ie alone time somewhere where no one knows where you are and you can just "ESCAPE!"). Then how is our career looking? Can we even think about working? Do we need to make a career change? Then of course the lovely medical costs of it. Medications, tests etc (plus being able to get to the appointments).

Point being, I don't think your dad appreciates what he has (ie freedom to drive with ZERO health concerns) and also doesn't take into consideration of how responsible you are being in protecting not only yourself, but other people that could get hurt/killed if you were to just start driving because they "RARELY" happen when you were driving. Ask him how he'd feel if someone with your condition was driving and s/he hit HIM! Under his rules, it was HIS fault for being on the road, not the person having seizures. Same as with drunk drivers. Is it my fault you got drunk and then drove into my car? Don't think so...

As for what to say to him, I would agree with Fedup (because s/he agreed with me 😏 ) that you need to explain to him how serious this really is and that you have ZERO control over the issue. Like I said before, "Dad, do you REALLY think I'm doing this on purpose?" Assuming he says "No" then start explaining how serious this is and how it affects your whole life (as the examples provided above). Plus, any and all medication side effects (ie drowsiness, anger (Kepp-rage), depression in general due to this falling in your lap out of nowhere and there not being an IMMEDIATE solution etc). Also, as Fedup said, you wouldn't want to have to take the responsibility for killing/hurting someone. And tell/ask your dad that. "Dad, how would you feel if I killed someone?" What??? What do you mean "kill someone??" Then layout the scenario.

Last, but not least, take him to some of the major epilepsy websites that help explain what it actually is and how hard it is to control etc. Again, "Do you think I'm making it up?!" Help him to get more knowledge and understanding and therefore, hopefully, he'll start to appreciate your choices of being responsible.

Okay, I'll hush now ;)
 
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