Getting Someone New to Understand the Pain of E

[Kate]

I'm in a semi-new relationship. We've been dating for awhile, and he's known from the start that I have epilepsy. He also knows it's not quite under control, and that I feel absolutely awful after having one. He knows I broke my wrist from a seizure awhile ago.. he knows its not healed and Im in treatment / may need surgery... He's seen me have a tc, followed the ambulance (apparently I didn come out of it - he didnt know what to do) and was in the hospital with me.)

Lately, we've been getting closer. As in, more touchy. We cuddle more, kiss more, etc. That's normally okay.. but.. I had a tc the other night and Im stil getting over it. (sleeping a ton, just feel like crap.) I apparently fell down and I am bruised all over. I hurt so badly, and I don't feel like being touched. AT ALL.

I don't know why this is.. but I really can't stand it. When we watch a movie I lay in my recliner and make him sit on the couch. He complains and complains.. but I just cannot "cuddle" right now. I'm doing all I can to even have company, but we're in an LDR and he's visiting from far away so this is my only time with him anyway.

My Keppra has also been upped. I'm on pain pills for my wrist, and sleeping pills, anxiety pills.. I feel like a walking zombie. He's lucky he gets any emotion out of me. I'm in so much pain.

Oh, I forgot to mention.. my parents are in Hawaii right now. And I miss them so bad. I can't talk to my mom or dad on the phone without crying. And I'm freaking 20. I'm just in so much pain all over, and my head, ugh, my head hurts so bad.

I have my brother, who does understand.. and my boyfriend (who obviously just doesn't get it.)

How can I help him understand? I've tried to explain to him, imagine all the muscles in your body just contracting and all, (like the seizure) and the pain you'd be in after. And the pain I'm in from my head.. etc. Not to mention me falling down. PLUS I have my chronic pain, which he knows about. He's generally understanding..I need to be loved.. I just need his love.. from a distance.

By the way. Im sobbing why write this. I am on Effexor XR.. and the omrning after the seizure, in the emergency room ( I have no memories of this ) - I woke up AT HOME in a hospital robe and a ton of pain. Then I realized I hadnt taken my morning medicines, other then seizure medicine which had been given to me. My brother didnt give me the Effexor, so I called my doctor.. and he said to expect extreme lows of emotion, but to contuine taking it. Im a mess! Ive never felt so depressed.. EVER. Ya'll know me. You know Im this happy posiive person. Right now, I dont even want to leave tihs chair and shower. I just want my parents to get home.... and all the physical pain to go away, which I dont see happening. (and the depression - ugh, thats a whole other story!)

 

[haird18]

Understanding is the hardest thing!!

You've got guts girl,
I know the feeling of having seizures it sucks:hi5::hi5: Everyday we don't know when or where when are going to have a seizure and it makes it hard to have a good partner to understand us. But you know it sounds like you have some one that cares and wants to understand your epilepsy just hang in there don't give up.:twocents: And welcome to CWE:e::rock:

David Hair

 

[Kate]

Thanks David! ((hugs)) I'm not new to the site, hehe. You probably haven't seen me because I'm not around a lot.. I've had a ton of wrist problems lately that's been keeping me from typing unless I really need to vent. BLAH. lol.

Thanks again for listening and understanding. I don't know what I'd do without CWE..

Sometimes I think, I should just take a long break from dating.. I'm sick of explaining my condition and these guys swear they understand. But then they get so annoyed at me when they can't hold me and cuddle.. or do more. *grrr*

 

[Bernard]

Are you taking any B6 to help curb the moodiness side effects of Keppra?

 

[Kate]

Yep, I've been taking the B6 ever since you first suggested it.​

 

[stilldancing_98]

Ohhhhh Kate, I do know how you feel. I go thru things like this. Mostly during menses. Look. I get that deep depression sometimes and I am like you. Happy all the time and this is just not right. First stop trying him to get it. If he is in to you enough he is going to stop thinking about being all over you and just help you so you can heal. I'm dating to. I just stay away when I go thru this time. It is hard. No doubt about it.Then when you have that quiet time you can think of other ways to help yourself. Remember love yourself first. Then you can love others better. Teresa

 

[alivenwell]

Take care of yourself first. If this guy really, really cares about you personally inspite of the epilepsy and extreme pain (and not the *grin*), he'll hang around and may eventually understand you. If he's just there for the *grin*, he'll probably move on eventually.

Your loneliness from your parents is probably a huge factor here. This guy isn't your dad, but he may be a good partner. If your brother is around, that sounds like he'll keep track of your situation.

Frankly, I wanted a lot of freedom from my parents. When I was in college and away from home, I really missed them. I used to call my grandmothers frequently to keep in touch with my family ties. But, that was long before cell phones existed (yeah, I'm that old!). We'll all watch out for you.

Please keep in touch with us. We'll offer any emotional support or understanding to you. By the way, if this guy is in a LDR, he must be willing to travel a lot just to come and see you. That sounds like a good sign (and potentially a good ride--take that any way you want!).

As a suggestion, if you're wiped out, and this guy's aware of your medication times, maybe he can help you maintain a decent lifestyle by helping you control your health. He'd have a hand in your health.

 

[skillefer]

Hi Kate! What I've learned from being married, is that most guys feel the need to fix something that's wrong. Your guy may be trying to honestly help you feel better by cuddling with you. He may think that cuddling with you will help you feel better because you will feel that he loves you and isn't scared to hold you. He's doing what he probably believes should make you feel better emotionally. And your responses to him are probably really confusing him. My hubby still hovers over me after a seizure. He watches me fall asleep afterwards, and then will come in and check on me 2-3 times in a 2 hour period of time. I've told him he doesn't need to...and that I'd rather he'd just let me sleep....but he does it anyway. He's better than when we were first dating though. Then he'd want to follow me all over the place for the next 2 days. (which gets irritating when you just want to go to the bathroom) Try to see it from where your guy is coming from.