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Thread: the tiredness

  1. #21
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Quote Originally Posted by shelby View Post
    I saw that video about the spoon therory just recently. If a normal person has 10, then I have about 4 with my medications, I'd have 0-1 without taking anything. The disease is so exhausting and painful.
    I think you misunderstood the spoon theory. The point is that normal people have unlimited "spoons" and we only have a few. Each activity takes one so our days are often limited because we run out so quickly.

    I am posting the link below for everyone to read once more.

    http://www.butyoudontlooksick.com/ar...e-miserandino/
    Mari

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

    ~Winston Churchill~







  2. #22
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Desleywr View Post
    There is also another point! Many of us who have Lupus or an autoimmune condition suffer grief which is often diag as depression! The grief we go through is caused by the loss of our life style and mental and physical capacity.

    I argue at some of these self help meetings that for grief we must go through the process of this loss and get through to the other side and enjoy our new life style and are then happy with our life as much as we can handle. We must always live our life to the fullest and enjoy what we have but looking back is ok for a short time but we must remember to move on. The death of our previous life must be remembered as well as a loss of a loved one, with happiness for those experiences. We must find joy in our new life with these conditions and allow ourselves to go through the process of grief without any reluctance or hinderence of miss diag of depression. We are entitled to go through our grief and never be ashamed of it, go through the process and come out the other end as a positive healthy attitude to enjoy what we have now!

    Sorry I get on the band wagon on the term of depression being attached with our conditions in stead of grief.

    Wow Desley,

    You know, as something of a Lupus "veteran" whose lived with this disease for many years now, I wish that when I was new to all of this, as you are now, that I understood things as clearly as you do.

    Well said. Carry on with the bandwagon.

    Rob

  3. The Following 2 Users Say Thank You to rob For This Useful Post:

    Desleywr (01-02-2012), tgal (01-02-2012)

  4. #23
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    Rob,
    Thanks very much!
    I did have a big flare in 1999 and struggled to get back a lot of my capacity over 2yrs. Then my latest and more likely the permanent position I started in 2007 , with the diag only 2011. So I have had a long time to analyse my situation without others input and it has been a survival thing I went through and a wonderful husband. I think a lot of my getting things together I have done and gone through so that my life with Colin is always full. I also believe that I don't have the right to take out my pain or frustration on him or anyone I believe I don't have the right to make someone elses life miserable I always can find something positive out of everything negative. I think I started that attitude with my disabled son, as I wouldn't be who I am today without going through my life with him.

    I think we all have a story to tell as to how we are today and what was a major impact on our approach to life.
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    I once wondered if my fatigue stemmed from a boredom with life, however I was so tired, that I couldn't stand it, that is why I did not feel motivated. Now that I'm taking plaquenil, I am studying for a nursing degree and plan to make myself work somehow. I don't get depressed because of my life but this disease has really messed my mind up. Takes alot out of you to struggle with it. I think I stay in denial too much, hope for a cure that doesn't exist. Just want that feeling of normal again. I have never went into an acceptance of this disease. Can't do it.

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