Hello all, I am new to the forum and am hoping to get some advice/support. So my wife of 15 years has what seems to be Lupus, though she has not have a confirmed diagnosis. If you go through the checklist of Lupus symptoms however, she has nearly every symptom and then some. She has been struggling with this for several years now and it is slowly tearing us apart.
So this all came on suddenly several years ago when she had a rapid onset of symptoms beginning with extreme fatigue, heat intolerance, dizziness, and she was suddenly not able to walk for a few days. We of course went to the doctor and were dismissed as nothing major at that time. Since then, she hasn't been the same. Symptoms have gotten worse and more frequent, and it is so unpredictable at times. For the past several years it seems to be on a sort of rotation though with some surprises here and there. She will be up and feeling good for about 4 days, and then will crash for 4.5 - 5 days in bed with extreme pain and fatigue. I know it is miserable for her. She used to do everything around the house. I would get up, got to work, come home and chill. She did all of the cooking and cleaning, and asked very little of me. She was so vibrant, and was such an involved, caring mother and wife. Now things have changed.
Over the past few years, she has become more withdrawn from everyone and everything. I know she can't do all of the things that she used to and that is fine. I have adapted for the biggest part. I know that I will be doing dinner every night, and that I will have to do the majority of the cleaning. I take care of cleaning the kitchen up, dishes, folding and putting laundry away, sweeping the house, and most of the mopping. I tend the house on a daily basis and take care of everything while she is down and make sure the house stays kept up. I take care of the kids when I am home, homework, and try to get them to do their chores. It's constant work with very little play. I go from work at work to work at home, then to bed, only to get up and do it again every day. My wife's only constant chore is to wash the laundry because she tells me that I don't do it right. Aside from that, she takes care of the deep cleaning when she is up. And this is where the problem lies...
On my wife's good days, when she is feeling energetic and is not in pain, she gets out of bed and starts cleaning. She has severe ADD symptoms with her Lupus, so it is interesting. She will begin cleaning in our bedroom, then move to the living room, then the bathroom, kitchen, and craft room and will continue to clean nonstop for 2-3 full days with no sleep. To make matters worse, she doesn't eat much during this time, and doesn't eat healthy when she does. After running nonstop for this time, she will crash for another 5 days leaving the house a mess because she wasn't able to finish any of the projects she started.
While this is an issue, a bigger issue is that she feels that she has to do this to contribute because of being down so much. I argue with her about this, but she insists. She doesn't spend any time with the family or me. There isn't family time, there is time where she is down and time where she is cleaning. When she is up, she is not pleasant to be around. She will either be pushing it, or will be on her medication to help her focus and give her energy which makes her worse.
In addition to this, she doesn't trust me at all to the point that it is also pulling us apart. It has gotten to the point that I am not permitted to have a cell phone, not allowed to have a facebook account, and if I am not at work I am to be at home. She get suspicious if I take too long at the store, or take too long getting home from work. I can't do anything with friends. It is to the point where this is more of a parent child relationship than a husband and wife. Intimacy and affection is no more. It has been more or less gone for years now. Once in a while it will come back for a day or two, only to disappear quickly. Intimacy at this point happens about one day every 6 weeks which is clearly an issue.
I don't know what to do. I love my wife, but this is not a marriage. I really don't mind doing most of the extra work, but this needs to be a marriage. I would love to be able to come home to a wife who is loving and affectionate. I don't care if she's sick, but I do care if she's cold. I would like to see her get up after he down time and just spend time with the family. That would mean so much to the kids and I rather than seeing her bust her butt to clean the house every time. And I would love for her to not expect us to act sick because she is. We are healthy and want to go enjoy life. She should want that for us but she doesn't. Lastly, I wish she would understand that we are living with the stress of her illness with her. She should let me have outlets and let me be an adult. Have a little trust that I am not going anywhere after all of these years and let me be an adult. Let me have a cell phone, let me have facebook, let me do the things that I want to do. Not letting me have these things just makes me resent her.
Sorry for the horribly long post. I am just at a loss and need some advice. Thank you all for letting me vent.
So this all came on suddenly several years ago when she had a rapid onset of symptoms beginning with extreme fatigue, heat intolerance, dizziness, and she was suddenly not able to walk for a few days. We of course went to the doctor and were dismissed as nothing major at that time. Since then, she hasn't been the same. Symptoms have gotten worse and more frequent, and it is so unpredictable at times. For the past several years it seems to be on a sort of rotation though with some surprises here and there. She will be up and feeling good for about 4 days, and then will crash for 4.5 - 5 days in bed with extreme pain and fatigue. I know it is miserable for her. She used to do everything around the house. I would get up, got to work, come home and chill. She did all of the cooking and cleaning, and asked very little of me. She was so vibrant, and was such an involved, caring mother and wife. Now things have changed.
Over the past few years, she has become more withdrawn from everyone and everything. I know she can't do all of the things that she used to and that is fine. I have adapted for the biggest part. I know that I will be doing dinner every night, and that I will have to do the majority of the cleaning. I take care of cleaning the kitchen up, dishes, folding and putting laundry away, sweeping the house, and most of the mopping. I tend the house on a daily basis and take care of everything while she is down and make sure the house stays kept up. I take care of the kids when I am home, homework, and try to get them to do their chores. It's constant work with very little play. I go from work at work to work at home, then to bed, only to get up and do it again every day. My wife's only constant chore is to wash the laundry because she tells me that I don't do it right. Aside from that, she takes care of the deep cleaning when she is up. And this is where the problem lies...
On my wife's good days, when she is feeling energetic and is not in pain, she gets out of bed and starts cleaning. She has severe ADD symptoms with her Lupus, so it is interesting. She will begin cleaning in our bedroom, then move to the living room, then the bathroom, kitchen, and craft room and will continue to clean nonstop for 2-3 full days with no sleep. To make matters worse, she doesn't eat much during this time, and doesn't eat healthy when she does. After running nonstop for this time, she will crash for another 5 days leaving the house a mess because she wasn't able to finish any of the projects she started.
While this is an issue, a bigger issue is that she feels that she has to do this to contribute because of being down so much. I argue with her about this, but she insists. She doesn't spend any time with the family or me. There isn't family time, there is time where she is down and time where she is cleaning. When she is up, she is not pleasant to be around. She will either be pushing it, or will be on her medication to help her focus and give her energy which makes her worse.
In addition to this, she doesn't trust me at all to the point that it is also pulling us apart. It has gotten to the point that I am not permitted to have a cell phone, not allowed to have a facebook account, and if I am not at work I am to be at home. She get suspicious if I take too long at the store, or take too long getting home from work. I can't do anything with friends. It is to the point where this is more of a parent child relationship than a husband and wife. Intimacy and affection is no more. It has been more or less gone for years now. Once in a while it will come back for a day or two, only to disappear quickly. Intimacy at this point happens about one day every 6 weeks which is clearly an issue.
I don't know what to do. I love my wife, but this is not a marriage. I really don't mind doing most of the extra work, but this needs to be a marriage. I would love to be able to come home to a wife who is loving and affectionate. I don't care if she's sick, but I do care if she's cold. I would like to see her get up after he down time and just spend time with the family. That would mean so much to the kids and I rather than seeing her bust her butt to clean the house every time. And I would love for her to not expect us to act sick because she is. We are healthy and want to go enjoy life. She should want that for us but she doesn't. Lastly, I wish she would understand that we are living with the stress of her illness with her. She should let me have outlets and let me be an adult. Have a little trust that I am not going anywhere after all of these years and let me be an adult. Let me have a cell phone, let me have facebook, let me do the things that I want to do. Not letting me have these things just makes me resent her.
Sorry for the horribly long post. I am just at a loss and need some advice. Thank you all for letting me vent.