over protective

[eslucas]

Hi there.
My husband has always been very supportive of me through my epilepsy dilemma but sometimes I think he's too over protective. He's worried about me going for walks by myself, something I've always loved to do. I rely on him to drive me places but I don't like to ask him because he drives a lot in his job. I have no problem taking the bus to visit my parents who live 1 1/2 hours away but he's worried about me taking the bus by myself too. I'm trying to see things from his perspective but it's hard and in his defense, I did have a seizure when I took a walk by myself once. It's so frustrating because my seizures have some common triggers (pms, fatigue, stress, weather change) so there are times when I'm not completely vulnerable but he's still worried about me traveling by myself.
Am I being too casual about this? Anyone else have similar experiences? How are your loved ones coping? Would love some feedback. Thanks.

 

[valeriedl]

My husband is a lot like this.

He really doesn't like me to get out of his sight is public, when we go to a store he doesn't like me go down a different aisle than him. When we go to large events and I have to use the bathroom he starts to get paranoid when I don't come out of the bathroom in a short time - he doesn't understand that women usually have to wait in line to get a stall to go in, and find one with toilet paper, we just don't pee against the wall and shake it dry (sorry if that's disgusting). He doesn't want me to cross the road. I have to text him at work every morning to let him know I took my meds - this only came in handy once because somehow the alarm got changed radio stations and all that was playing was static and I slept through it, so I really don't complain about doing this .

If I go out with people it's almost as if they are taking his child out. He sits them down and lets them know what to do if I have a seizure. Makes sure they see where my medicine list is in my purse and that they have his phone number. He'll tell them not to be afraid to call 911 if they get too scared then call him.

Do you have any warnings that the seizures are coming on? If you don't (or even if you do) he may be worried that you'll end up getting off at the wrong bus stop and winding up in the middle of no where. I don't have any buses around here but I know my husband is afraid that I'll have a seizure when I'm in a public place and just wonder off.

Can you maybe try talking to your neuro about this? If you know what brings on a seizure, and your neuro does too, then this might help your husband better understand that he needs to give you some freedom.

 

[SlimBlue]

He's male and he obviously loves you dearly.. it's a stereotype I know, but that's what us blokes are designed to do- we protect the herd with our wooden clubs

Sorry to be flippant, I would be aghast at being stifled like that but at the same time it must be great to have a partner so determined to help/protect you- a really confusing situation to be in, I bet.

I've always been a wild child and I've been living on my own miles away from my folks ever since I was legally able to, and all the time since diagnosis. I'm sure my mum must worry loads, but I'm soo glad (and so lucky) she accepts the way I want to live.

Val has a good point about understanding triggers tho, and if the info from your neurologist doesn't help, maybe a session with a family therapist might help him relax a bit about it?

I'm the wrong gender to be posting on this thread I guess, but I wonder if there are any males on here who are in the same situation with their wives?

we just don't pee against the wall and shake it dry

sometimes we wash our hands too!

 

[Cint]

My husband wasn't like that. As a matter of fact, he's a pilot and was a gone frequently, even when the seizures weren't under control. Plus I lived 1500 miles away from any family. So I was on my own with two young children quite a bit. And had to learn to ask friends and neighbors for help. I've had some bad seizures when I was out walking by myself, an yes, 911 was called. My kids have witnessed some bad ones too, and once 911 was called from home. My daughter thought I was dying.
I would plead with my husband (we're now separated) to please take shorter trips and stay and help with the kids, but NO, he wouldn't listen. So I did what I had to do.... leave the situation and lighten the stress.
Now that I live by myself, I can take buses and public transportation. And I wear a Medic Alert bracelet that has all the info.

 

[eslucas]

Hi Valeried,
Thanks for your feedback. And I thought I had it bad. He's certainly very efficient and I'm referring to the things he does when you go out socially but at the same time, it does seem like it's 'overkill' not wanting you to go out of his sight. Funny isn't it? We think they're being over protective and yet they do this because they love us. Maybe SlimBlue is right and they're just being protective like men do with 'their woman.' I can certainly empathize with your situation. There's gotta be a happy medium. I believe as long as we can see things from the other person's perspective, it can make it easier for both sides to meet in the middle. I do get 'warnings' sometimes, but like you said, it could be too late. Increasing my meds (eventhough I hate the side effects) may give me that extra to control them better. Take care of yourself and anytime you need to 'vent' about this, feel free to send me a message and we can help each other deal with this. Take care. :0)

 

[eslucas]

Hey there SlimBlue,
Thanks for the feedback. I never thought that the old stereotype might influence his need to protect me. I'm also very lucky he loves me so much. It's terrific that your mother has adapted to reality and given you that space to live your life and you're right, she probably worries (without showing you) a lot. There's no guarantees for anyone in life. I try to keep track of my triggers but even so, it doesn't alleviate his stress and there's always that little margin of unpredictability that exists. I have thought of seeing a therapist in the past, but the feedback from you and others help a lot and something I can discuss with him. Take care of yourself 'wild child'. See ya around the site.

 

[eslucas]

Hi Cint,
Thanks for your feedback. So sorry you had to endure so much on your own through such a difficult time while raising two kids. Wow! Don't know if I could've done that. I can't imagine how it felt for you knowing your kids had witnessed the seizures. It's kind of a catch 22. You want your family/friends to understand, but at the same time you don't want your loved ones to see you have a 'grand mal.' My parents would 'freak' because they worry so much. It's very unfortunate that your husband wasn't there for you and as you said, separation has helped alleviate that stress. Glad you're getting your life back in shape and your kids are very lucky to have such a caring and loving mother. All the best! :0)

 

[SlimBlue]

Aww :blush: thank you

I was just trying to lighten the mood for you a bit- for what is obviously a major problem in many of our relationships (judging by the amount of threads about it) and whilst I hate stereotypes, unfortunately a lot of them contain a grain of truth.

Another option I guess is, does he read this forum/have an account? Passing on feedback is great I guess, but maybe it might help him even more if he sees how many people this situation affects...

See you too!

 

[eslucas]

Hi

Hi there SlimBlue,
No, my hubby doesn't have an account on this site and I can suggest it but he'll probably just 'opt out' and listen to the posts I've read about. He's very open minded so it will be easy for me to discuss other couples experiences.
Just occurred to me...I'm writing about him being overprotective but when I think about it, I've been just as overprotective with my family. For the past 14 years, I've 'watered down' my illness by telling them everything is okay, I'm okay and never tell them how many seizures I have. I realized only recently, that this isn't going to 'fly' anymore because sooner or later, they'll wonder well if everything is fine, then why is she still having seizures? So now, I've decided to 'invite' them into my reality gradually so it's not a shock to their system. Probably shouldn't have done that. I know my hubby didn't think it was a good idea. Sorry for 'rambling' on like this. Thanks again for the feedback.

 

[Janus]

Hi all. Great post! I got married pre-diagnosed and after 10 years a divorce. We never enjoyed our time as she was angry that I have 'differences' from her, resulting from E.

 

[SlimBlue]

when I think about it, I've been just as overprotective with my family.

Love's hard isn't it? *sighs* It's very hard to find the perfect balance between letting them in, and freaking them out..

I'm exactly the same with mine if I'm honest- no need to worry mum every time I have a seizure/injury, and the ones I do tell her about, I have a laugh with her about- going to the pub with huge panda eyes etc, and the crowd at the bar dissipating in front of me..

We never enjoyed our time as she was angry that I have 'differences' from her, resulting from E.

Man, I bet that was hard

I've been too guilty to ever have a long-term relationship- even tho the few partners I could have with were totally accepting about the E- I hated myself for making them share my burden (and being a dick to them coz of the keppra) so I always ended them, even tho it may well have worked.. for their sake.

 

[eslucas]

Hi Janus,
Wow!
Thanks for the feedback but I'm so sorry your wife couldn't adapt or accept your E.
It's one of those life lessons no one wants to learn: People react to situations differently and unfortunately, not always for the betterment of others.
Fear, ignorance, embarrassment, seem to be some of the tipping points for that behaviour. It just hurts a lot more when it's a person you thought you could count on. Your unfortunate experience has taught us another life lesson: Don't run away from a loved one or friend when they need you the most. I'll bet you and every member on this site can be counted on! Take care of yourself. :0)

 

[eslucas]

Hi there SlimBlue,
I've told my hubby numerous times in our 14 yr. relationship that i would completely understand if it was too much for him to deal with my E, an ex-wife and raise a daughter but he always reassures me that it isn't. I've asked myself the same question:
can I handle E, his ex-wife and raise a step-daughter at the same time? It's been challenging but lots of love and commitment has always helped us get through.
We may think that we're doing our partners a 'favour' by giving them their freedom, but on the other hand, do we have the right to make that choice for them when they're willing to take that journey with us? I'm sorry your previous relationships ended over this issue.The negative side effects from the meds don't help either. Don't ever take Topomax! I was slamming doors and saying the f word when I experimented with that.
Your previous partners were very lucky that you cared so much about them and remember...they thought you were worth it and that's because you are and if and when the opportunity strikes again, you'll take that in consideration if you have to make that decision. Life's too short. :0)

 

[Janus]

Hi eslucas, I liked what you said. I will mention, for the record, that parting ways turned out to be the best thing for us. It wasn't just about E. Aw well. live and learn right?

 

[SlimBlue]

Thanks eslucas, that really made me feel good- your posts are extremely insightful and positive

do we have the right to make that choice for them

I used to wrestle with that one over and over. Looking back I think it was for the best, at the time I just wasn't in control of my moods- it's taken me years to get a handle on the keppra- but now? I think I'm ready

Aw well. live and learn right?

We do indeed. Thanks everyone, it's threads like this that remind me why I'm here

 

[valeriedl]

When I go out with family it's the total opposite of going out with my husband. If I go to the grocery store with family we do our own thing then meet up and check out. There was one time though that I heard my name come over the intercom in the store. My grandma was scared to death because she couldn't find me and thought maybe I had a seizure and an ambulance had taken me away. Turns out I was in the back of the store flirting with a stock boy (We don't tell anyone this - ok )

I went to the mall with my dad and he let me go shopping myself. He just wanted me to give him a call every so often to let him know I was alright. If I go to the mall with my mom we stay together, but that's usually what girls do.

Just occurred to me...I'm writing about him being overprotective but when I think about it, I've been just as overprotective with my family. For the past 14 years, I've 'watered down' my illness by telling them everything is okay, I'm okay and never tell them how many seizures I have. I realized only recently, that this isn't going to 'fly' anymore because sooner or later, they'll wonder well if everything is fine, then why is she still having seizures? So now, I've decided to 'invite' them into my reality gradually so it's not a shock to their system. Probably shouldn't have done that. I know my hubby didn't think it was a good idea. Sorry for 'rambling' on like this. Thanks again for the feedback.

Defiantly don't hold back how many seizures you are having. You need to let your family and dr know what's going on. If you tell your dr that you haven't had a seizure in two months, and you've actually had 10 (just an example), then he may start taking you off of some meds or changing things around which could end up making it worse. You could end up having 20 seizures in one month that are way worse than the ones you were having already.

I always let my husband know if I think I may have had a seizure when he wasn't home. I may not be 100% sure about it because I generally don't know that I've had one unless someone saw me have it. And we always let the neuro know about them all.

Feel free to ramble all you want too!

 

[eslucas]

Hi Valeriedl,
I have always kept my neurologist 'in the loop' in case I had to change/increase my meds, or try another method to control my seizures.
It's funny. We know that stress can trigger seizures and when I'm out with my husband, I feel stressed because I know he's always 'on guard.' When I'm with my family, I'm completely relaxed because they don't know the full extent of my disability. That may seem unfair to them but I decided that because I don't see them very often (long drive) and I have a relatively good idea of my triggers, I avoid going out with them at those times. Ironic isn't it? I have a greater chance of having a seizure with my husband when he knows everything than I do with my family because they don't know everything. Hope that made sense. Perhaps if we channel our energy on what we can do instead of what we can't do in our husband's company, we can enjoy ourselves. Bottom line: Our stress decreases and so does our chance of having a seizure. This in turn can decrease their stress level and who knows, give us a little more space.
BTW,my sister-in-law is from Pittsburgh and lives there with my bro and nephew. Take care.

 

[eslucas]

Hi SlimBlue

Thanks eslucas, that really made me feel good- your posts are extremely insightful and positive

You're welcome! Thanks for the positive feedback. Glad the post made you feel better.

 

[valeriedl]

My family lives next door and I always let them know when I've had seizures and what I've done during them. My husband and I moved in together about 8 years ago and since then they don't actually me have many seizures now but my husband physically sees them all the time. I think that's why he's more over protective than my parents.

He's seen me have them at home and them in public. I've sat down in the middle of a store and won't move. I might just start pulling things off the shelf and putting them in the buggy. Once I put about 10 boxes of Hamburger Helper in the buggy and he couldn't get me to stop so he just waited for the seizure to be over then put them back on the shelf. I know he doesn't want me to be alone in public if I have one because he doesn't know what I'd do during it.

The last seizure I had was a really bad one and I was at my parents house. I was drooling and doing all other sorts of things that my husband sees me do when I have a seizure.

I came out of the seizure but went right into another one a few minutes later. My mom wanted to call 911 but my husband told her to wait because sometimes I might have two in a row like this and the things I was doing are normal when I have a seizure and I should be out of it in about 10 minutes. My mom was still scared to death because of what was going on with me so she called 911, and yes I started coming out of it in about 10 minutes like my husband said, before the ambulance even got there.

 

[Gillette]

My husband is the same, I get the constant question 'Are you okay?' I understand it must be difficult, I dread to think what I would be like if it were to be the other way around. I go out walking with my dog on my own when the kids are at school and my husband is at work, but I don't feel alone because I have the dog if that makes any sense. I don't tend to go out socially all that often since I found out that the first thing my husband does is look around the place we are in to find a quiet area and the quickest route to get to it should I have a seizure. I felt awful for him, he can't relax properly no matter how many times I tell him I am fine. Here was me living with the stress and fear but the relationships that we have around us have it hard too. I made a compromise with myself that since I don't drink alcohol now as it's one of my triggers and I struggle with being in the company of others who are drinking as I am still trying to adjust, I get him to take me out for nice dinners and then I go home and leave him to go out with his mates in the pub if he wants to. That way he can relax and not stress both himself and me out. I get the extra social side by going to the movies with my kids and husband on a weekday. Happy campers all round then.