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Thread: Having a hard time...

  1. #1
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    Default Having a hard time...

    I am really needing emotional support from people that understand what I'm going through. I just recently got diagnosed, within the last month. My boyfriend is supportive at times, but other times thinks that I'm making it all up. He doesn't understand how it can come on so suddenly. And why some days I can stand for a little bit and do dishes, and other times, I can't even take a shower for 3 days cuz I'm so weak. I am on steroids right now, but it doesn't take away all the pain. And hasn't helped any with the fatigue and exhaustion.
    I just feel like my world is falling apart. I sit all hours of the day and night and look around at the normal things that I can't do anymore. I am really depressed, and besides my boyfriend, I don't have any other family that can be support for me. That's why I'm turning to you guys.
    He keeps saying that he doesn't know how to handle this, well I don't either! It's all new to me as well. I just feel at a lose. I am going to start going to the support group meetings around Dallas if I feel well enough to make them. There are 2 a month close to me, but I really need you guys in between. I'm tired of crying all the time, and no one understanding why.

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    Oh Laura07, don't cry. We're here for you. Your story sounds like mine. I was only diagnosed March 06, so, this whole new lifestyle is brandnew to me as well. I, too, don't have much of a support system. I still think at times that my family thinks I'm a hypochondriac, that I'm making all this up, and its just in my head. :roll: They just don't understand. I hear this a lot, "But you don't look sick..." If they only knew how I feel in the inside. Looks can be deceiving, but this disease is like that. I was in denial myself for a while. Lupus, how did I get it? All the changes I feel happening to my body, is too much to handle at times.

    So, Laura, whenever you need to vent or if you have any questions, please ask. You have a new friend... :BIG: And I'm here for you. You're not alone. We'll go through this together, ok?
    "I've learned that when bad times come, you can let them make you bitter or use them to make you better."

  3. #3
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    Thanks! That makes me want to cry tears of joy just hearing that. I am having a tough time handling this on my own. I'm so glad that I found this group and all you fine people. :angel:

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    Hi: Just wanted to say I've been there too. Even after 7 yrs from my diagnosis I still have really bad days. I went to the Doctor on the first. I havent had a good day since. The trip takes its toll. I live a 4 hours drive away, but it usually takes me an extra hour because I have to stop so much. Then the appt and back home. It really does me in. You are not making things up, this is lupus. I'd have your boyfriend read the posts and a book called you don't look sick. I have been lucky my husband is so understanding.

    Wishing you happy days ahead.

  5. #5
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    I go without a shower a lot too. I just don't have the energy either. The most I go is three days because my hair starts to look like on oil slick and my head starts to hurt :lol: My husband tries to understand, but he really doesn't either. I think it's hard for guys because they are problem-solvers and we all feel helpless in this situation.

  6. #6
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    Laura07 sorry you're frustrated :roll: Try to go online and get lots of liturature on lupus and sit down with your boyfriend and read it together. This disease is a rollercoaster that unfortunately we just have to deal with. As you live with it over the years you will learn so much from it. It's so new, give yourself and your boyfriend time to let it all sink in. It's always harder for the individual without the disease to grasp it. Know that you've come to the right place and will get lots of support from us :multi:
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

  7. #7
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    Yeah, I have tried to educate myself. I have already read 2 books and tons of stuff online. I've asked my boyfriend to read it, but he says he's too scared. I told him that I am scared too. Oh well, hopefully he will get a grasp on it soon. Luckily, my doctor says that I can start doubling up my dose of Lexapro, so maybe I won't be so depressed.

  8. #8
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    Hi Laura,

    I went through the same things you have and felt so frustrated. Then when I went to my new rheumatologist; he suggested that I read his book "You Don't Look Sick".....I believe it's available on AMAZON.Com

    This book deals with all the things you described. It is written by two rheumatologists, here in Seattle. One is a woman, the other a man; and they do an excellent job of how to explain and share with others what you are going through; and also to teach you how to better understand your body, when symptoms are coming on, etc.

    So take your shoes off and stay awhile, we're all here to support one another; and there are so many wonderful, supportive, knowledgeable and caring people to help you through the rough days, and tough times; they have helped me in so many ways.

    If you can, I would highly recommend the book "You Don't Look Sick"....I have had friends and family read it. It has halped them understand my disease.

    I wish you the best and am glad you are here!

    Life is good, love is better
    Browneyedgirl

  9. #9
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    Thanks! I've read about that book on here a few times, I will order it this week. All I do it seems is read and watch tv. I have taken up sewing some things that needed it around the house, but my muscles in my arm start hurting after a lil bit. I'm trying to think of things to stay somewhat busy.

  10. #10
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    Hi Laura,
    You live so close. I live in Sachse. If you need a friend to talk to I'm here. I have not joined a support group yet but I would love to.
    Your friend in Texas, Jessica

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