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runnor
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I have a wife with LUPUS and I am having trouble coping with her disease, she has had LUPUS now for 10 years. She not getting better, she's not able to doing really anything around the house like she was able to do when we first got married. She now has a flur up bigger then before, her blood test results showed up as stomach cancer, and other problems that come with flur ups, She tells me the I make her flur ups worse when I am around her, I used to work on FAA radars and would have to travel a lot, that is why she says that I make her flur ups worse when I am around her. I guess when I was traveling a lot at work, I would be gone for months at a time and she start feeling a little better less flur ups and so on. And now I losted my job and I am home all of the time trying to find work .And I guess I am getting to her because she is telling me that she is having the biggest flur up she has ever had, her heart is having PVC's and low blood pressure. I need help in a big way; I have been in denial for 10 years about her condition. In my mind if you are not bleeding or don't have something broken I would assume you are fine and nothing is wrong. I feel like she is lazy and will not do anything around the house, like very simple things; like get up off the couch and feed the dog or get a glass of water or something like that, but I know that this is not the case, she is not lazy she just can't do the thing she likes to do any more. I really need help for both of us in how to work through this downside to the disease, I feel like the whole world is against us on seeking help in this matter. I am trying, but I am not trying hard enough to find the answers, I would look the other way and blow it off and say to myself my wife is not sick, but I am lying to myself, she is very sick, people with LUPUS that I have seen have little success with controlling the disease or the symptoms of the disease. Please I need Help in coping and or counseling to deal with my wife terminal situation. I don't want to lose her to this unwanted disease or through divorce either. Maybe I am getting to detailed into my life, but I need help in coping with this major problem fighting the LUPUS battle. Please HELP!!!!!!!!!!!!!!! 
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~christa~
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Please don't take anything I say as a personal attack on you, but, in our lives, I am the wife - I thought I would share with you how it feels to be on the other end - something she may not share completely with you. First, I have heard Lupus and a few other similar issues coined with the term 'invisible illness', where, like you said, she is not bleeding, so she is fine. Many people look at these invisibles this way. Truly, we are sick, and we do have something wrong with us - bleeding or not - our illness is there. From your post,it sounds like you truly want to try, that you want to help and understand and be there for her. The best advice I can give help her - if she cannot get off the couch to feed the dog, then do it for her...yes, this is frustrating for you, but think of how frustrating it is for her to be laying there sick and not having anyone help her. Also, I think you know - stress is a HUGE factor in Lupus flares - so, if there is any extra stress on her, then that adds to her flare. Anything you can do to help out -no matter how small or insignificant you think it is helps. Trust me on this one. Please do not be to hard on yourself, this is not a change that can happen over night. At the risk of sounding rude, and I apologize in advance for it, please do not be mad or upset at her for anything that she cannot do, just pitch in and help out. Once she sees you care, support her, then she will get to feeling better (less stress) and will be able to get back to helping out more. Said in love and with prayers ~christa~ ~christa~ |
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POLLY
Posts: 17
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I need help in a big way; I have been in denial for 10 years about her condition. In my mind if you are not bleeding or don't have something broken I would assume you are fine and nothing is wrong. I feel like she is lazy and will not do anything around the house, like very simple things; like get up off the couch and feed the dog or get a glass of water or something like that, but I know that this is not the case, she is not lazy she just can't do the thing she likes to do any more. I really need help for both of us in how to work through this downside to the disease, I feel like the whole world is against us on seeking help in this matter. I am trying, but I am not trying hard enough to find the answers, I would look the other way and blow it off and say to myself my wife is not sick, but I am lying to myself, she is very sick, people with LUPUS that I have seen have little success with controlling the disease or the symptoms of the disease. Please I need Help in coping and or counseling to deal with my wife terminal situation. I don't want to lose her to this unwanted disease or through divorce either. Maybe I am getting to detailed into my life, but I need help in coping with this major problem fighting the LUPUS battle. Please HELP!!!!!!!!!!!!!!! Runnor, your post is so familiar sounding, expecially from a spouse. My husband felt the same way as you. He didn't believe lupus could do what it did to me. I have to ask you, have you ever been to her Dr and listened to everything he has to say to her? He should also explain her condition to you. I'm currently living my life with 20% of one kidney. The other kidney is shut down completely. Lupus attacks our main organs. Chronic fatigue goes along with this disease. I've recently lost several lupus friends from kidney failure. Your wife needs your support. She didn't choose lupus, it chose her. There is no controlling this disease. Docs put us on prednisone, plaquenil and methotrexeate and so much more to try to help us. Lupus is one of the autoimmune diseases and Dr's do not know how to treat it. All a Dr can do is to help a person. They're practicing medicine on us with lupus. It's a lot more serious than you think. She is very ill. The best things you can do for your wife is: make sure she has a very good Dr who is familiar with lupus and be a loving and supportive husband. Emotional stress of any kind, especially at home, can set off a lupus flare. This is one thing our weakened immune system can't handle. |
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lupusdiva
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HI, I AM NEW TO THIS GROUP BUT WANTED TO RESPOND. LUPUS IS SUCH A FRUSTRATING, MYSTERIOUS AND CONFUSING DISEASE. THE MAJORITY OF THE TIME I FEEL IT'S HARDER ON MY FAMILY THAN MYSELF. I HAVE SLE, FIBRO, RAYNODS, SJOGRENS, NEUROPATHY, VASCULITIS, RA, AND LUPUS NEPHRITIS. MY HUSBAND WAS AT HIS WITS END TRYING TO UNDERSTAND. AS A WAY OF COPING HE STARTED A BLOG CALLED LUPUS FAMILY. IT'S A WAY FOR PEOPLE WHO ARE LIVING AND LOVING SOMEONE WITH LUPUS, IT MAY HELP YOU A BIT. BEST OF LUCK. HERE IS THE LINK. FELL FREE TO CONTACT ME WHENEVER. www.lupusfamily.com. -J |
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chronicchick
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Hi, Ive lived with lupus for over 5 yrs. DOnt take this personal but the worst thing about living with an illness you can't see is someones denial of an illness they never have walked in. Imagine what its like to be hit by the local train that de-railed. My advice Show her as much love as you can with out making her to feel like she's an invalid. Give her lots of love, she deserves it. SHe can tell how tense you are when dealing with her. As somone said above, she didn't chose the lupus, it chose her. Lupus is not an illness anyone wants. Remember she feeels horriable she can't let the dog out or any chores you think are so simple. and take care of your self as well. Tell her that you don't understand what she's going throught and ask her how it feels. maybe make a nice candle light meal for you both so you can talk. treat her like a princess- |
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redhairali
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You have had very many good answers from the people here. Lupus can be such a pain in the butt. Every one of us have different problems and stress is just a killer.I would recommend going to butyoudontlooksick.com They have some good info there. Or, lupusfriends.net, the girls there are always willing to help anybody. It may be nice to have your wife look at sites, to read about other people going through the same things she is. A support group help me a lot. Just let her that you are there for her. Good luck. Ali |
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"MDJunction to me is somewhere i feel safe i feel i can be myself and not be judged. I love the fact that i get to see that im not alone in what i am going through and i also get the chance to help others on their journey through guidance and communication.
