Need help coping

[mhamilt4]

Hello PrPrinn,

I know exactly how you are feeling. I've been with my boyfriend now for just over 5 years. He is 30. He started having seizures about a year after we started dating and he was 25. Everything that you've said, I have felt. The worry, the fear, and just having to see him go through such an awful experience did cost me a bit of sleep. He had them while he was awake, asleep, working, DRIVING! When he first started having them, I would call him numerous times a day to just check up on him, but it got to the point where I was more of a "motherly" type than the girlfriend I was supposed to be; coming off as nagging instead of caring. His argument would be, "I'm not a child!!" My argument was, "you've never SEEN a seizure, you don't know what happens!" After visiting many forums and learning about the disorder, I realized that my 'nagging' at him, was only causing him to be more stressed out, which in turn could have been causing him more seizures. If I wanted to be with him (which was a decision I had to make, and it wasn't an easy one despite my love for him) I had to learn how to be caring, considerate, and most of all, to work WITH him, not against him, and if that meant I had to keep my worries and fears to myself, then so be it! That's what the forums are for afterall! It is life-changing, yes, but it doesn't mean life has to END. But everyone here who has said, "learn about the disorder" is completely correct. We fear things that we don't know, and if you learn about this, it will help you, undoubtedly. Having said that, I still worry about him while I'm at work and he is at home (he hasn't worked for 3 years because he was having seizures at work, and as a mechanic, it just wasn't safe), and when he takes a deep breath in his sleep, I wake up in "ready" position. But I don't let him know that. He just knows that if I call him and he misses my call, to call me back as soon as he can so I don't think he's fallen and can't get up. I have seen him have many many many seizures, and honestly, it doesn't get any easier to witness. I think, in part, it is because I know that there is nothing I can do for him during that time. But girl, learn all you can. I wouldn't wish this disorder on my worst of enemies, but a wonderful man fell into my lap with it. If you had told me when I was 18 that I would be caring for the love of my life at age 24, I would have laughed in your face. People ask me all the time how I can deal with something so serious while I am still just a kid myself, and the answer is always LOVE. I love him and I will do anything that I can to help him. It's very hard. It's a constant struggle in more ways than one. But, you CAN be happy...it's just a matter of how you look at it and how you deal with it.

[stilldancing_98]

Wow, I have learned a lot here. I have had men ask me what do I do if you have a seizure? Because its just me and my little boy lol , he just continues to watch tv lol. Unless it goes on to long. just tell him please make me comfortable. And I have all sorts of little flyers and stuff to show them. lol My little boy knows how to handle it, a bit scared sometimes, but we talk then everything works it self out. Or maybe a little fun role playing. Am I sick or what? You guys are smart!

[skillefer]

Completely agree with mhamilt4. She could be telling my hubby's story. I know that it isn't easy for him watching me have seizures. And he does panic a little. He has this tendency to call a few times every day, just to make sure I'm okay. Oh, and if he hears the ambulance. Princess, keeping your distance from him, or not letting him over to your place is NOT going to stop it from happening again. It will most likely happen again. You just won't be there to see it. The thing is, this is now a part of him. It's something you have to learn about, and work around, but it is a part of him. I think you should go to the next neurologists appt. with him. Ask the neurologist questions. And talk to your boyfriend. My hubby and I talk about my seizures, and how he feels about them. He's told me how they scared the cr** out of him at first..but then he kind of got used to it. I know, sounds weird, and you don't think that you can ever get used to it. But if you stay with him, yeah you can. There will come a time when you'll be able to laugh at some of the seizures and what happens during them. The thing is...if you're choosing to stay with your boyfriend, then he really needs you to not act like you're scared of him, or scared of being alone with him. Tell him the truth. Tell him you're scared and that you know it's a silly fear. Ask him how he feels emotionally since being diagnosed. I bet he's just as scared as you....

[Bernard]

Nobody likes to feel helpless/powerless, but that is exactly what witnessing a seizure brings. There is a bit of a psychological component to it that all family, friends, spouses, caregivers, etc. need to work through.

[stilldancing_98]

Good one Bernard, That is about how my brain feels when I have a T/C. It's true. Its scary for both people. I think you will do fine. I have night time seizures to. And my boyfriend sleeps right thru them. Hows that. LOL Or. The first time he saw me have a T/C he put a pillow under my head. I have faith in you. For me a sense of humor ( seems that way for Bernard too) just kidding Bernard. And always keep that comunication open. It helps a lot. Teresa