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Thread: Married to my wife for 8 years, she was diagnosed with Lupus 2 years ago

  1. #1
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    Feb 2012
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    Default Married to my wife for 8 years, she was diagnosed with Lupus 2 years ago

    Now first I bid You to excuse my avarage english skills it is not my native language, so bare with me.

    The matter of concern here is centered around living in a marrige with a person that has very low energy in general. So how does this show in the life We share, my wife, our two girls age 4 and 8 and myself.

    Well where do one start.. I have known my current wife for quite along time, since 1993 to be precise. My wife, that at this time became my girlfriend, have allways had tendecies, that I now, retrospecitively, can look upon as symptoms linked to Lupus. She, for instance, have allways had an abnormal need for resting and have had countless visits to various doctors for a multitude of reasons.
    Today My wife has a university degree and is now currently working as a dentist full time. She has been able to complete her education and She is very happy and proud of her job. During the summer 2009 She was diagnosed with Lupus after a series of attacks or flares. For Her these flares shows as pain in the gastronomical region followed by rashes on her body (legs, arms, belly, chest) which again led to pain in some of her joints (fingers, toes especially). My wife was very lucky that she has gotten the best possible treatment that exists in our country, and is now being treated by the leading expert here. Now she is one of the 'lucky' ones in regard to the possible severity of Lupus in general. She has in other words a light version of the disease. Of cause nobody can fortell the future but this is what we have been told by her rheumatist. Ok and now I will continue with the next part that undoubtfully will make me look egocentric in some of your 'eyes'. Be aware that this only represents my viewpoint and not the viewpoint of my wife - this is obviously me as a subject describing things, so take it for what it is.

    Both my wife and I have spend a long time finishing our education. Im currently writing my final paper at a university, going well and on time . I was previously working with childcare for a few years and decided, just before my wife was diagnosed with Lupus, to study for a candidate degree - this was, of cause, done with the acceptance of my wife after discussing it. Furthermore around this time my wife had a desire (a desire she had for a long time) to buy a house and around that time a decent offer appeared and We accepted. So at the moment my wife is the only one with a real income and is thereby responsable for the financial side of things - I do contribute but She has the overwhelmingly best income as a dentist (unfair ofc and thereby also the most responsible. And for this I am truly grateful. However this is the economical side of things and I see this as a completely seperate side from the emotional side of our relation.

    Well as you might have guessed it is the emotional aspects of our lives togehter that, in my view, have turned complicated. I have to major concerns in regard to our emotional life togehter in our family. The relation between my wife and I and the relation between my Wife and my kids. These are of cause to some degree inter-related.

    I could start with the problems I experience in regard to how my wife react, especially when low on energy I feel, towards our children. My wife can be a good mother to our daughters. No doubt. She takes our oldest swimming, for pianolessons, are good with creating social ties to other parents at school, thereby creating openings for friendships being build between our children and their peers. But when she is low on energy she, and she often is, she can become very rejective and controling to the degree of being condensating. I, having the background I have as related to kids learning and development, cant help become very dissapointed, dispasionate, aggrivated and generally feeling powerless when I see no or very limited improvements in this (her) behaviour over time. This has been the cause of countless arguments in our family. This has also happend in front of our children which ofcause is tragic. This last point however being one that we, in a span of a couple of years, have been allot better controlling.
    But to make my point more clear in regard to my wifes abilities as a mother there are some atypical things I would like to point towards in regard to how our family is structured. When we had our kids and they were newborn, I was primarily the one sitting up at crasy hours. I was most commonly the one making bottles for them in the middle of the night. At that time my wife was studying. After she got back from her studies she allways needed a nap for 2 hours. I spend time with the children at those times. When she woke up there was only dinner and then an hour and a half with the kids before bedtime. But this was years before she was diagnosed with Lupus around about 7 years ago now. Today we have to children and often when she gets back from work she is exhausted. It is better now in comparance to before she was diagnosed and got into treatment. Back then she would go all gray/pail in her head and look quite sick. But the aggression that follows that seems to stem from the absolute lack of energy is hard to tackle. One thing is how she is unable to make an effort in regard to me (maybe in the sense of truely showing that she loves me), I dont know maybe this is a more complicated issue than it just being related to her illness , but it is just hard for me to handle when she is disrespectful towards our children. She neglets them at times and tells em to go away. There have been a slight improvement in this regard, after we for years have had discussions about this, but still demon shows it face at times. I, being proctective of my children, dont react too kindly and understandingly to this behaviour. Trust me. My wife often says that she is sorry that she dosnt spend more time with her children. However then when the chance to do so arises she often pass out on it. For instance she would go to town instead and does some shopping or have lunch with one of her friends. My wife is often, when she is alone with her kids for longer periods of time, which again happens very very rarely, she often seeks assistance. Going to her mother or my parents that luckily lives quite close to us. Then there have been issues with apologising for her own children in advance when talking to other people. Dont know maybe this is just at typical mother related issue. Luckily I have been able to reduce that problem by confronting her with it. A few days ago the youngest of your girls was asked in kindergarden what she wanted to happen the most. Her answer was that she wished to have a mother that did not need to sleep as much as her did.
    I our home im tuggin in my girls, reading for them and typically the one that takes em out for fieldtrips, walks etc etc. Also my daugthers share bed with me cause my wife has to have her sleep at night, of cause leaving me to sleep absolutely awfull having two small rhinos turning around 360 degrees repeadetly at night And no I dont really feel sorry for myself in this regard. I dont feel that I am overburdend in any way. I just feel that my wife is lacking in some manner and that our kids are the ones thats being cheated of something. Sometimes I really feel like im the mother in this household. But the major issue is that I belive these issues makes me love my wife less. I think i search for a women capable of being the warm and self sacrificing mother for her children. I must say that this is something I feel that i have yet to truly experience.

    Then there is the relation between my wife and I. Now I realize that issues in any marrige are probably or altleast potentially pretty complex in origin. This might also be this case in ours. However the ability or perhaps rather possibilty to be caring and loving is probably pretty closely linked to having the ressources and energy to do so. Oh well its probably just a marrige thing and a thing happening to allot of couples after knowing eachother for years and years. Things that have gone is the spontanious side of things and love being replaced by structuring of everyday life. I wonder if it is hard for people with Lupus to show love at times due to there absolute lack of energy. This can feel very draining at times on the counterpart. In any realtionship both parts need to feel that they are appreciated, I must admit that I somethings find that this supposed or hidden appreciation is quite hard to find. When the fatigue is at its maximum there is often only demands left and the need to relax and/or be left alone. Sex is something that is negotiated and often in the light that it shouldnt last too long. Due to, for instance, infections in the bladder region.

    Well im not the type that is totally worn down by the tings I just mentioned. However I do feel that it is putting a very serious strain on our marrige and our family. Im not really sure as to why I did write this letter. Guess I just wanted to share my experiences.

    Wish you all the best.
    Best regards!

  2. #2
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    Jan 2010
    Houston, Texas
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    Hi Jacob. First I want to welcome you to WHL. Although this is a difficult disease on the person it is also difficult on the family, as you have come to see.

    I hope you are not offended by my next question but it is the very first thing that came to my mind. Has your wife been put on any anti-anxiety/anti-depressant meds? Not all Lupus patients have to go on them but I would say a majority have to be on them at least for a little while and many for a long time. Just as Lupus affects our bodies it can affect our brains to some point or another. At the very least most of us get what we lovingly refer to as "brain fog". Although we often laugh over it it can be very frustrating in the fact that we can't remember words that we want to say or where we put something down 30 seconds ago.

    I tell you about the fog to show you that, even in the mildest forms of Lupus, things go on in the brain. Not even thinking about the fact that you have this nasty disease, for many of us, there are physical reasons that our hormone output and depression/anxiety come to play a big part in our lives. Also, if she is on steroids of any kind, they can also cause rapid mood swings. It isn't always easy to admit that we need help controlling our emotions but if she can come to understand that it may just be another part of the disease (and not just the fatigue) some of these issues may be able to be cleared up to some extent.

    I am not sure if this helped you or not but just know that even some of us with this disease understand that our disease causes pain to those we love. Once again, welcome to WHL and I look forward to getting to know you

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

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  4. #3
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    Mar 2011
    pinjarra, western australia
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    hello jacob, and welcome.

    i am a 50 year old male who has lupus.
    i have had it most of my life, but only diagnosed about 4 years ago.

    i read in your post that your wife "would go all gray/pail in her head and look quite sick".
    i was very much like this.
    in my case it was because the lupus was mainly attacking my blood. not my organs at this point.
    with lupus attacking my blood it then effected everything that relied on this effected blood.
    that meant that i had trouble with oxygen concentrations.
    i also had much reduced blood flow.
    this reduced blood flow meant reduced flow into the brain.

    remember i am talking about me.... i do not know if it is rthe same for your wife.

    this reduced blood flow to the brain effected me in many ways.
    being unable to handle confonting situations was one of them.
    unable to cope with stress, or leadership was another.
    both of these things would make me go from a rational person....
    to an angry unconsiderate person very quickly, and i could not control this change.

    i am currently taking 2 different low dosages of anti depressants.
    not because i am depressed.... but because my brain needs them to help me function properly.
    with this medication i am able to cope with stress much better.
    i am also able to control my emotions and my temper.

    may i be bold enough to suggest you talk to your wife and your doctor about this possiblity.

    remember if your wife is like i was.........
    she is not able to handle confronting situations very well.
    it will need tactful discussion to help her.

    in my case.....
    my inability to handle things resulted in;
    me having several mental breakdowns,
    my wife and i seperating several times, whilst i was undergoing councelling.
    my acting unaceptable towards other members of our family.
    lots of problems at work.

    all of these problems were due to the lupus effecting me, and i did not know it.

    again welcome to what i consider the best support group i have found.
    i call this place my cyber family......
    i treat all members here as if they were my family....
    and receive the same from them.
    i welcome you with open arms.

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  6. #4
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    Mar 2011
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    Jack: I think you have received some good advice so far.

    May I just add that some of your description of the division of care for your children and your wife's need to nap and sometimes being short-tempered when over-tired sounds very much like my house...specifically when I am in a flare. I know I rely too heavily on my husband for help at times and I worry that he or my child will resent me someday for it. I suspect your wife has similar worries.

    Do I know how to fix things? No. But I try when I am feeling well to make up for it. I try to thank them both for their understanding and help whenever I am ill. And yes, sometimes when I am well, I choose to relax with friends for an evening instead of stay home with my child. I feel selfish when I do it but I also know that it is part of my mainting a positive mental health balance.

    I just want you to realize that your wife may desperately wish she had more to give. About a year ago, I got my diagnosis and I started saying to myself and others; that I have to find a way to have something left (energy, motivation, patience) when I got home from work. To think it is not enough. It almost became a mantra and right now, I think we are doing well. I try to get my husband to tell me how he feels so maybe your wife would like that too...but I will tell you that your words may hurt her feelings as well. I know some statements in your message hit me in the heart like a dagger. It is not my intention to dismiss my family when I am ill and I wonder if it also not your wife's.

    I hope you and your family are able to find a healthy balance. Best wishes.

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  8. #5
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    Thank you all for your time and advice.

    Regarding the advice about the possibility of using anti-depressants. I have taken this up for discussion with my wife since I read your replies. Now, my wife has been on antidepressants previously (Zoloft) for many years. Some years back, this was around 2000-2001 my wife had a severe depression. After she was diagnosed with Lupus we have both reflected upon the possibility of these been linked somehow. She told me about having an experience in the subway/metro back then where she could not remember her way back to where she lived, which again would have been plain simple normally and therefor addresses the severity of her situation. But as I said she was put on Zoloft and was on this medication for many years untill around 2009/10 when she, after having used only a minimal dose, decided to shelf it. But we have talked a bit about it and I think that it surely is worth discussing. It certainly could be a possible solution to minimizing her moodswings. My wife is not currently using any steroids only the malaria medicine Plaquenil.

    And to you Steve. About not being confronting. Now there is a challenge for me Ill look into it but no promises. In many aspects of life not being confronting is quite easy for me, however, one has to have certain borders and limits to what you can possibly accept. However, there are certainly better ways of handling specific situations, than starting arguments in front of our children anyways. Maybe I should use to 'take the kids and drive away approach' to give things time to cool down. Its probably a better solution than having a discussion with somebody spiraling down a path of impulsiveness and aggression. Then afterwards returning for a more tempered conversation about the issue when the 'sea' is more calm.

    And finally Im really sorry for causing distress to anyone reading my message. It was in no way my intention to do so. I wrote my message mainly to express myself freely. In a fairly long marrige, or in our marrige anyhow, allot of things aint being discussed as openly as they used to. Many words trigger defensive mechanisms and are being treated as they were invitations to start a minor war. In my experience wars dont often solve allot of issues. But where did the time to sit down and talk to eachother go, and evenmore finding eachothers replies and contributions significant These issues are very common I guess and does not at all have to be related to Lupus in any way. All in all I love my children and I love my wife. The horrible thing is that I sometimes cant help wonder I she really loves me, and to be perfectly honest that may also influence my ability to love her back - however noting is transparent in this regard. All in all it takes two people to make a marrige work and I guess, in allot of cases, it also takes two to mishandle it. I know she love her children. I do not doubt that at all. Neither does her children. Sometimes her reactions are fierce thou and that can be hard to handle, especially without being confronting Its a good thing the summer is comming here where I live. That gives me allot of options to run away with the kids for fieldtrips when her brain starts acting in an, at the same time, unfamiliar and familiar way. And just maybe one of the various brands of anti-depressants could do her some good as well. Thank you all for listening and your good advice.

    Best regards

  9. #6
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    Vancouver, BC, Canada
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    Hi Jack, as a grown daughter of an SLE mom with severe mood swings I can honestly say that I understand your confusion and frustration. It took me a long time to learn why there was so much anxiety in our home when I was growing up, the important thing is to seize the good days and celebrate them whenever you can and to remember them through the not-so-good ones. My mom had fairly severe symptoms by the time I was 4 or 5, before that I remember her to be a very energetic, cuddly, loving and warm person. It took her almost ten years to be diagnosed (most of my early teens) and she was often exhausted, short tempered, very angry or distracted. This honestly stemmed from her level of pain and fatigue as well as feeling unsupported and misunderstood. There was a general lack of education about the disease and my family certainly knew nothing of it. We didn't know how to be supportive because we could never understand her lack of energy because we always had plenty. My dad was the strong silent type that worked two jobs to support the family when she couldn't work. The best thing I remember him doing/saying for us was to take us aside and explain to us when she was angry or short, that she wasnt really upset with us or at us (myself and my older brother) but that she was sick and being sick most of the time would make even an angel grumpy (Thinking about that now makes me teary).

    Your wife can't help how she feels, unfortunately there's no off-switch for Lupus. Focusing instead on the things you can change helps more. Educate yourself and your children about what she is going through and find positive ways to support her. Yes, she might be unintentionally short tempered or closed off because its hard to shift your focus when you're in pain, but there are things you might be able to do to help and support her in those moments other than having an argument or confronting her. Taking a breather is a good strategy that you've already used, good for you for making the effort. Next time maybe ask her if there is anything else you can do to help. Perhaps then wait and ask her to spend more time with the kids when she is having a good day. (The good days are days I treasure the most from when I was growing up).

    It's not easy to be patient and understanding about something you are not experiencing, so try to step into her shoes when you're feeling frustrated; think back to a time in your life when you were injured, in pain or severely fatigued and try to imagine carrying that feeling around with you all day, all week or for several weeks. Now add to that working a full-time job and imagine how difficult it might be then to focus on the things around you, to be pleasant or to hold your temper or frustration. She doesn't mean to be this way. Also you're not a bad husband or father for being concerned or frustrated, but don't let that frustration make you give up or forget how hard this is for your wife. Perhaps use that frustration to fuel your curiosity and understanding for what she is going through and utilize it to do your own research. Sometimes reading and understanding what others with Lupus go through, helps us to have better empathy for our own loved ones because we are able to see it subjectively, "try it on" and imagine ourselves in their position.

    Also consider doing what my dad did for us: talk to your kids about it so they understand that when their mom is angry that the anger is not directed at them and that they don't have to feel anxious or worried. Remind them that shes loves them and is just having a hard day. Understanding what their mom is going through helps. Kids are sensitive but resilient, they are also very emotional, able and willing to empathize with others. Empathizing with and trying to understand my mom has led to some wonderful moments in my life that I am truly grateful for.
    Last edited by design_for_mom; 03-03-2012 at 03:05 AM.

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