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Married to Lupus

Discussion in 'Relationships & Lupus' started by Husband to Lupy, Oct 24, 2017.

  1. Husband to Lupy

    Husband to Lupy New Member

    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    Over the past few years, she has become more withdrawn from everyone and everything.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.
    MrE likes this.
  2. lazylegs

    lazylegs Moderator

    Hello Husband to Lupy,

    Things have spun out of control. I am sure you have told her how you feel but it might help to write her a letter stating everything you told us. Seeing your feelings in writing may get your wife to reconsider they way she is living. Normally I would say just to print your post out but she would be wary of you being on the computer expressing your feelings to total strangers.

    Another possibility would be to get her doctors involved. She may need some counseling to help her learn to pace herself and reprioritize her daily life or even a medication change. A support group might be helpful also. Hearing how others deal with daily life and the guilt they have of letting the family down may prove invaluable.

    Take care,
    WarriorChic2016 likes this.
  3. keebler

    keebler Moderator

    Perhaps her meds are not the right mixture for her? We all react to med differently and what works for one might not another.
    Listening to our bodies is hard to do. When we feel so good we do tend to over do it. Then pay for it the following days.
    Do you go to the doctor with her? It's always good to have an extra set of ears. Plus you can fill in things that your wife has forgotten. My husband goes with me.

    It is a form of grieving for us. We long for what we were long ago and now having to deal with a new self. Depression goes along with dealing with a chronic illness.

    Take care,
  4. MrE

    MrE New Member

    All I can say is I know she feels alone. Lupus is weird and I get the feeling people think it's made up because there are so many symptoms and they affect different people in different ways. My wife was frustrated with me at first because all I wanted to do was sit in the dark. I had heavy photo sensitivity in the beginning. The drugs caused it. It felt like lights and the sun literally had weight and were pushing me down. It sounds made up now that I say it.

    And don't ask her if you can help. Just help. Sick people are fighting their symptoms for their independence. Her fear is being alone.

    You absolutely deserve to live and have outlets. You should go, do and not need to ask. I feel like she could be doing better than this though.

    Prayers for you and your wife
    WarriorChic2016 likes this.
  5. Husband to Lupy

    Husband to Lupy New Member

    So I have been continuing to deal with this cycle that she has been in since the post. 3 days ago she got up, and then started again cleaning our room. It once again consumed her. Asked her several times to just not clean today, to just relax and enjoy feeling good and to spend some time with me and the kids. The reply I got was "I'm just going to do this for a little bit". That little bit lasted several hours and I asked if she was about done (it was nearly 9:00) and she said she was wrapping it up. At 11:00 I asked again, and got the same answer. At midnight, I went ahead and got my shower and went to bed (while she was still cleaning our bedroom, and this was okay with her). I have to get up at 6AM for work and she was still cleaning. I got home from work at 4:30, and she was still cleaning. At bedtime that night, she got a shower, then assured me that she would come to bed with me. At 2:00AM I fell asleep while she was still "finishing up".

    Not sure what to do on this one. On one hand I know she is wanting to be helpful and wanting to make me happy, but I honestly don't care if the room is perfect. I would just like to spend some time with my wife, and with her and the kids together. That is all I have ever asked for.

    Tomorrow we have a Dr. appointment. I am hoping that maybe we'll be able to talk some while driving there and hopefully I can get through to her. I am so lonely at this point. I really just want a wife, not a housekeeper and at this point that is all she is. She is a patient for several days, and then a housekeeper for several days. There is no family time, no affection, and no intimacy at all anymore. Even when we had plans to carve pumpkins with the kids as a family, she sat long enough to pick a design then would come in from time to time and see how we were doing while she was continuing to clean. Anyway, enough ranting. Maybe tomorrow I'll be able to get through to her. If not soon, then I am not sure where this marriage is going to end up. I don't want to do this loneliness much longer.

    Thank you all for your kind words and support. I'll try to keep you all posted on how things are going.
  6. WarriorChic2016

    WarriorChic2016 New Member

    I am so sorry to hear this! I honestly don't know WHAT to say other than you all have my prayers.

    Have you tried telling her what you mentioned in BOTH posts? Someone mentioned writing it down in a letter which seems to get the point across to my husband at least for a little while. Tell her you don't care about the mess, you just miss your wife! She needs to know! YOU schedule the one on one time that way she can't get away from it. Please keep us posted!

  7. druid

    druid Registered

    When you are on an airplane and the safety announcement is playing they tell you to put the oxygen mask on yourself before you put it on the kids.
    This is because you can not take care of the kids (or wife) until AFTER you take care of yourself.
    Who's taking care of the caretaker?

    Yes, your wife has special needs. But that does not mean that you stop having needs.
    Though it probably means that you are redefining your needs and possibly not in a healthy manner.

    Your post may feel like a rant. And maybe it is, a little bit.
    But it's really a good first attempt at stating that you are frustrated and probably not able to sustain the status quo.

    Share your thoughts and expectations with your wife.
    Expectations that you have on her. That she needs to take care of herself and you can help her with that.
    But you can not do it for her.

    Think about what you need too.

    You will need to have your physiological needs met: air, water, food, shelter, sleep, clothing, sex.
    Lupus husbands often think they are superman and don't "need" sex. That's BS.
    You may not need it as much as you want it. But you do need it.

    I know that there are a lot of good men out there supporting their wives needs but not their own.
    It's not good to not meet or acknowledge your own needs.
    If needs are not being met they you end up being short and unsupportive to your wife and kids.
    When that happens you feel luck the proverbial schmuck!

    Sex, or lack thereof, is a serious problem for lupus couples.
    Personally I'm on year 4 w/o and still trying to figure it out.
    It ain't easy and you need to take care of your needs too.
  8. Ana_5678

    Ana_5678 New Member

    Hello! I know that this is an old post. I hope you guys are doing much better now. But I have to say, this behavior sounds very much like OCD. She can't help it, not her fault. It's her way of coping. If it's still going on maybe it would be wise to have a talk with a psychologist.
    All the best!
    sagehen likes this.

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