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Dealing with someone who doesn't understand
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12/03/2008 10:28
GiveMeHope
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 I was diagnosed with lupus after my daughter was born. She was born 12/24/06. I live with my boyfriend (father of the baby) and on occasion his 11 year old son. I have books on the disease I tried to explain to him about the disease and how i feel. But I know that my week is always planned out. I put in 40 hours of work I will have 6-8 loads of laundry to do each week. I have to clean a three bedroom two bath house everyday. I am very fatigue every day that I have to take provigil 200-400 mg everyday so that I can stay awake. I have to get me and my daughter showers. I have to take out the garbage, vacumm, entertain my daughter and make meals. I try to talk to Brian and its like talking on deaf ears. He is not romantic. He feels that I am just not moditivated enough and lupus is just an excuse. I feel that the relationship is going to have to end.
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12/03/2008 11:33
momwife26
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 I understand what you are going through it takes time for spouses and significant others to understand what you are going through. I have had the same troubles and I have three children. You have to do what is best for you. Sometimes though our relationships need work but the partner just needs time. Lupus is a lot to deal with and take on. The responsibility may scare him. If you feel like it is time for you to let go then do it. If not Just apply patience it is really all you can do. Along with taking him to the doc with you. I had to really let my house go a little more than I wanted to sometimes it is better for you that way than to keep trying to do things you can't. You have to remember that you have a daughter to live for.
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12/03/2008 13:57
Granni
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 Dear GiveMeHope glad you are here. We support you in what ever route you take. I'm sorry about your signifigant other not realizing how serious this is for you. My Husband is a procrastinator. Love him dearly but-eek! I tried to explain my Lupus to him because he would rather have me tell him than read it for himself. I started giving him excuses why he needed to take me to the Dr. just so he could hear it from the horses"s mouth. It made a difference. When I couldn't do work around the house-so be it I told myself (I always prided myself on being a great house keeper).He started doing more. I don't take advantage of him but he seems to "get it" more each day. It's time you take care of yourself and daughter. She is going to need you so you need to get healthy. Granni

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12/04/2008 04:45
GiveMeHope
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 Thank you for your insite. I have taken him to the doctors and he only listened to what he wanted to hear. My daughter can tell when I am not feeling good. When I have the discoid flares with the sores she tells me mommy has booboo it hurts, mommy really sick. I get from him its no big deal. There was a night that I had to crawl on my knees to get my daughter to bed because I could not walk. If I am in pain and fatique, I lay down and he will respond with I guess I won't see you till the next day. Or maybe if you move around you will feel better.
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12/04/2008 04:54
GiveMeHope
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 My significant other is a procrastinator to. But I know that if the house work does not get done by me then it wouldn't get done. I tried it one day. I left a glass in his sons room on the desk that they both use everyday. It had pop in it and it sat there for days. I finally had to take it down stairs because it was growing stuff. They had a fish that they were to take care of and that wasn't done things were growing on the fish tank so I of course the fish died because I told them I refuse to take care of the fish I have to many responsibilities. My daughter can realize when I am sick and she will be two on the 24th. But I have a 36 year man and he has an 11 year old son and they don't get it. People have tried to tell him but he listens to what he wants. Any suggestions.
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12/04/2008 09:37
mumeva
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 It is very difficult for our spouses to see us sick. Men in particular because they like to fix things when there broken but with someone who has an illness they can't fix. I have been sick for 15 years and at the beginning when the doctors were trying to find what was wrong with me my husband was very scarred and took care of the kids-house-shopping and of course me. Now that we know whats wrong and 15 years later my kids are grown but I still need help and sometimes its like pulling out my hair(whats left of it) to get him to shop or wash clothes - You get the picture. I know he still gets scarred to see me like this but in other ways he still doesn't quite understand. I try to get him to read my lupus books but he doesn't. My 27 year old son still lives with us and he is so wonderful, he will do dishes and laundry and helps me out no matter what. So just have a little more patience and maybe you can back off of cleaning the house a little, I had to. This support site is a wonderful group we all understand what its like to be sick so please feel free to vent all you want.
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12/07/2008 23:39
lauraluv099
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 You said you have books on Lupus - would he be willing to read any of them? Or even parts of them, if you highlighted some of the pertinent information? Perhaps that would help him understand.
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12/08/2008 14:36
mumeva
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 I have tried to get him to read but he says no. He has seen me so sick and when I was in the hospital he was terrified maybe more than me although the first night I was in the hospital I didn't sleep all night and had the nurse stay with me because I was scarred that if I went to sleep my brain would explode and I wouldn't wake up

My mom and sisters are great to me anything I need they are right there for me. They haven't read any of my books but I tell them about all of the ones I have. I have read sections of one that I really like to my husband but I would prefer that he pick one up and read it without me asking.
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12/09/2008 06:21
GiveMeHope
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 no he wouldn't I have tried everything he has seen the sores I get. He has seen that I have to use a heating pad almost every night. He says he feels sorry for me but he doesn't know what to do. I work full time 40 hours a week, I do all the laundry, he cooks once in a blue moon, I do the vacumm, I do the dishes and I shower our daughter, I take out the garbage, and I do the dishes. I have been waiting for him to do repairs around the house and he has been procrastinating on that so I started doing them. I am lethargic almost every day, my body always hurts and all I ask is for some help. He tells me well I cooked dinner yesterday. But I had to do the dishes. He took out the garbage but it was already on the back porch so all he had to do was take it down the stairs.
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12/09/2008 13:36
mumeva
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 I really think they mean well but just don't know how to show it. I think woman are more compasionate (SP?) and know how to step in and help with chores or whatever needs doing. I myself do all the cooking - cleaning - dishes - take out the garbage- watering all the plants - shopping - and I do all the bookwork for our business and by the end of the day I am exhausted well actually I wake up exhausted. So I think alot of us are in the same boat with this one.
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