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Falling Down

Discussion in 'Relationships & Lupus' started by DeputyChris, May 23, 2015.

  1. DeputyChris

    DeputyChris New Member

    I have been married to my wife for 16 years now. She has not been given a diagnosis of lupus at this point, but I feel it is coming based on her visible and mostly invisible symptoms. She has been prescribed medication that is commonly given to people with lupus. She is often fatigued, suffers from joint pain, and is sensitive to the touch. I would say she has more days struggling to make it through than good days. Admittedly, I am having a tough time with it. Its not the being there for her, or doing things for her that is tough. I love my wife and find it comes pretty natural for me. It is our wavering relationship and the emotional toll it is taking on me. I miss the quality time and passion that has virtually been stripped. It obviously hurts that my wife is no longer interested in me romantically, but deep down I know she does not intend for it to be this way. We have three girls, and two still living at home. I no doubt standby my vow of "For better or for worse" and "In sickness and in health". I can feel myself starting to become a hermit, and I have lost whatever sense of humor I used to have. I am hoping to get a husband's response on how to cope with the loss, and advice on being a better husband for my wife.
  2. lazylegs

    lazylegs Moderator

    Welcome to the site Chris.

    In the event your wife does have Lupus things will most likely improve once she gets on the right medication. She won't be as tired or in as much pain which will help to bring back the feelings she once had. Have you spoken with her about how you feel? Sometimes we get so caught up in ourselves that we forget about how our illness is affecting our loved ones.

    It is important for you to continue to have a life outside of Lupus. Is there some hobby you would like to become involved in again? My husband got back into sailing. Yes he is away long hours on those days but he comes back energized and happy so I can't begrudge him that.

    Take care,
    Eileen T likes this.
  3. Smile Of Life

    Smile Of Life Duncan

    I found I needed to change doctors many times before I found one who knew about lupus. This is important as each doctor has a different idea as to how to treat the symptoms and even once you find a good doctor, they need to try different mixes of meds to find the right mix for each person. Perhaps get your wife to change doctor to get the problems more under control. Maybe a little normality might return.
    Good luck.
  4. x_claire_x

    x_claire_x Moderator

    Hi Chris... I think the time before diagnosis is the worst. You feel dreadful, nobody is diagnosing you, family get frustrated and angry that nothing is being done to help.....it is a very hard road to travel but there really is light at the end of the tunnel. It was all I could do to survive through each day with so many demands on my time with two teenage girls, a mother with early onset alzheimers and a father who wasn't coping , a husband who is self employed and so busy. .I look back now and would never wish to revisit that time.

    My meds took a little sorting out, and I still get tired and have some dreadful bad days...but I have learnt a lot on how to manage my energy and appreciate every good day. For instance today I am cooking for eight family members ....just off to walk the dogs (husband is out swimming early) and I am really looking forward to the day... I will have payback tomorrow and have to put in a slighty slower day, given the chance !! I am 8 years post diagnosis and feel better generally than years before diagnosis...obviously had a prob for years without knowing...thought it was just my normal.

    Keep plodding through... you are a lovely husband to even come here to ask for advice/info/help...she is a lucky lady. I am sure you will be in her heart even more for all this love and support. I love my husband to bits...and he appreciates me even more with what we have tackled, yet again, in our lives together.......... it does take energy to be proactive with the romance part....but as the teenagers leave we have got our old life back pretty much....and do loads of stuff together, just back from a lovely weekend in London....and rather than feel knackered as I used to... I felt energised and very close to my husband. Glad you have found us....we all need support on this journey..........Claire
    Eileen T likes this.

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