Lupus is ruining my marriage

[Lourie]

Hi to all of you. I can't really believe I am venting such personal stuff here but I can't do this alone I need advice. I was dx last year with sle right after I was married. My husband seemed supportive enough and helped me and made sure I took all my meds which were alot. It seems I am in a flare that has lasted along time and a little over a month ago I started having seizures daily. The first 2 times he was scared for me and I have been going to docs and its becoming a long process on getting meds to stop the seizures they want me to see the right nuero cause the one I did see didn't specialize in epilepsy which he thinks I have. Now my husband stays away doesnt ask me how I am doesnt talk to me at all. When I try to talk to him he says things like what do you want me to say. I asked him if he was cheating on me because he has been staying away from me and his comment was are you asking me if I am cheating on you? That hurt! All I want is my life back and he is so selfish not even to talk to me. Every once in a while he will tell me my illness is messing with him. How the heck does he think I feel. I don't know what to do. I really think our marriage is over but I can't deal with this right now. I can't even manage not to have seizures everyday how do I deal with this. I had 2 yesterday and he was here but didn't even know it cuz he stayed away from me all day. I just wanna cry, cry, cry! I know he isn't caring so then I get mad at myself for letting him make me feel this way. What to do any advice please

[smiley]

big (((((((((((((hugs)))))))))))) lourie... maybe this is his way of dealing with it... maybe he just does not know how to deal with it at all.. and is hiding it all inside.... I know that this does not help with the way you are feeling... but think about it.... when he thought it might be a passing ailment.. like the flue etc.. he seemed to cope.. later when it was evident it is going to carry on.. he felt lost.. I am sure.. ..is there no counselling group in your area?..Some men also females.. deal with things in many different ways...how long have you been married...??.. I know personaly how scarey it is to see the one you love having a seizure... my son had epilepsy growing up.. it is gone now.. but at the time i was very scared.... my husband who is a good faher.. refused to believe it was going on.. but not because he did not care.. because he did not know how to cope with it.... best wishes to you Lourie and many many hugssss...smiley :D xx

[alobreto]

Hi, Lourie! ;)
You seem quick to decide that your lifelong commitment is over. :unsure: While hubby has given you a very long time even though he isn't coping well, you decide after a month of HIS difficulties to call it quits. It seems to me that hubby is not the whole problem.

I agree that counselling would probably help the two of you get in touch with your feelings and also back in touch with each other. If you aren't committed to working on your problems, though, it won't help at all, and it would probably be kinder to hubby to cut him loose.

Chronic illness is hard on not only the sufferer, but also on everyone who cares and has an emotional investment in that person. It sounds like hubby cares and has an emotional investment in you and your relationship. It also sounds like he'd like a chance to improve both of your lives.

I'm not disregarding your suffering or need for sympathy. I'm just trying to point out that you are not the only person in the relationship who has a need for understanding, patience, and compassion.
Best regards,
Angela :flowers:

[lupusgirl]

HELLO LOURIE.. :wave: I UNDERSTAND WHAT YOU ARE GOING THROUGH WHERE THE SEIZURES ARE CONCERNED, AS I SUFFER WITH THEM SINCE BEING DX..WHERE YOUR HUSBAND IS CONCERNED, MY ADVICE TO YOU WOULD BE PERSERVERE, I KNOW IT HURTS, BUT HE MUST BE SCARED TOO..I'M MARRIED AND I KNOW MY HUSBAND PANICS ESPECIALLY WHEN I HAVE A SEIZURE..IT'S ALONG AND HARD ROAD FOR BOTH OF YOU, TRY SUGGESTING COUNCELLING AGAIN. I HOPE EVERYTHING GOES WELL FOR YOU BOTH, MY PRAYERS ARE WITH YOU..TAKE CARE :love: IRENE U.K.

[Lourie]

Thank you all for your comments and advice. You all are probably right and I am just over reacting. I am just so scared of losing my life and it feels as though I am losing my husband. We were so close now it seems were miles apart. I know the meds they have me on are making me a little emotional too so I am not quite myself. I am sure once they get the seizures under control we will be fine. I am just a big scaredy cat. Thanks