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Thread: Dealing With The Outlook Of Lupus

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  1. #1
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    Default Dealing With The Outlook Of Lupus

    Hi,

    Just wondering how anyone deals with the outlook Lupus causes. Knowing that for the rest of our lives we have to work around Lupus, it won't work around us. That we are always going to be tired or something and that that effects how we can see and determine the rest of our lives. Like I have had to be off work lately, I think suffering depression but my Lupus just flaring up again and it just becomes to much knowing and thinking that for the rest of my lives there will be struggles. Like can I manage Uni which I am planning to do next year and can I handle that or eventually get into a Law career which I really want to do. It just seems too much now. I don't like how it can beat me, like I use to babysit all the time and now I so want to but don't know if I can and others in my family are so supportive but sometimes the consideration of my Lupus becomes annoying because I don't want it to determine what I do and can and can't do yet it's a bit hard to not consider it and the symptoms etc. What annoys me is I was all fine with it before as I have been diagnosed for a year and I just accepted it but for some reason now I just don't think I can, like it's hard. I don't know just if anyone has some words of wisdom because I know Lupus is hard for everyone but having it at such a young age, as teenagers, I think brings a whole lot of other concerns and worries. So any advice anyone? Please and thank you!!

    Yol

  2. #2
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    Don't get me wring though I love and need and wouldn't be able to cope without the support of my family and a few of you may know my sister on this site, debstar. It's just hard that people, including myself are forced to consider my Lupus because of the symptoms and what it causes etc

    Thanks again guys just wanted to add this.

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    I'm 18 and I've had it for 2 years and its still hard. I find myself throwing myself a pitty party sometimes and truely what helps me is coming here and talking it out with everyone. I cant talk to my family because they dont get it. They are as understanding as can be but they cant understand what its like to wake up in great pain, feel great in the middle of the day, come home and feel like you just want to pass out, then cant do anything they ask because you hurt so much. I have a hard time doing the whole "stay in the here and now" kind of thing but I've been trying not to think about my future. It scars the hell out of me sometimes to think that I could have something bad happen to me because of my lupus. I could worry about getting hit by a bus too, but I dont. I've been trying to take peoples advice and live now and not worry so much about what might happen later.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Thanks. That last sentence or two really helps. It's just sad and scary thinking of you're potential before and after you're diagnosis and accepting that no matter how much you want it not to change it may be forced to. It's just really hard sometimes actually accepting that and I don't think anyone can ever understand until it happens to them no matter how close you are to someone and think you understand the day it happens to you it opens up a whole lot more understanding and questions and experiences and fhsksnfjdkdj now Im not making sense but maybe you know what I mean but those that do try to understand do make it a whole lot easier

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    i have had to retire, because of the complications of lupus.

    my thoughts are try to live as you want to live.

    it is not easy, but the worst thing you can do is give up on life.

    depression is a bad spiral that will eat away at you, making your lupus worse.

    enjoy today, for tommorrow will bring ..................... ?
    (nobody knows what tommorow will bring)

  6. The Following 2 Users Say Thank You to steve.b For This Useful Post:

    debstar (09-18-2011), YollyDolly (09-18-2011)

  7. #6
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    wow - Thanks Steve, I've been struggling to accept that I will have to live with Lupus. My doctor said my disease was only in the "emerging" stages, so I had hoped she was wrong. The last few weeks symptoms have to coming fast and furious and frankly it's really ticked me off. I am far too busy to be slowed down by this. There are so many things I want to do. But right now all I seem to have energy for is the basics. By the time I get home from work I'm exhausted.
    I'm sorry, I shouldn't complain. So many on this site can't work and are in constant pain. So many have far more serious issues than me. But it sucks!!

    That said, your advise is very wise. I can sit and moan about the things I can't do, or I can move forward with the things I can. Modify my expectations and activities instead of giving up. I'll be "walking girl" instead of "running girl".

    Thanks again,
    Brenda

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    steve.b (09-18-2011), YollyDolly (09-18-2011)

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