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I need to do a little family education...

Discussion in 'Newly diagnosed' started by NapMaster, Jun 6, 2017.

  1. NapMaster

    NapMaster New Member

    My wife was late (again) meeting me at the parking garage to go home after work this evening, so I just reclined my seat and took a (30 min.) nap. This evening my we were talking about our schedule for tomorrow night, and she told me to come home without her (I can leave earlier than she can) "instead of sleeping in the car...nobody needs a nap that badly."

    It's like talk of fatigue goes in one ear and out the other.

    So maybe I need to find some educational materials for her. Does anyone know of any good lupus websites that explain how lupus affects people and how it can affect a family? I could curate a list of sites for her, and she might, maybe, possibly look at one or two before she buries her head in the sad at Denial Beach again.
  2. keebler

    keebler Moderator

    Here is the spoon theory that might be of some help for you. Lupus is hard for us to understand let alone our love ones. Only another person dealing with lupus will totally understand. The fatigue is like we run out of gas, nothing is there left to go on. Have you taken her along to your doctor appointments? If not she might get a better idea of lupus.


    I hope this is help to you and your wife.
    Lupusdude likes this.
  3. x_claire_x

    x_claire_x Moderator

    This helps my family understand at least some of the time....... they ask me if I have run out of spoons ...or how are your spoon levels Mum ?
    Lupusdude likes this.
  4. Jessica1

    Jessica1 Moderator

  5. LLLin

    LLLin New Member

    The spoons theory helps people understand lupus better.

    I also have another image that you could ask your family to picture as follows.

    SLE is an autoimmune disorder where the immune system marked healthy cells as dangerous invaders and launched attacks against them. When the SLE is active, you can picture the General (White Blood Cells) announcing to his army:

    “Mayday! Mayday! Enemy city sighted! Deploy the troops! Send the warships! Fly in our fastest fighter jets!” (The White Blood Cells, Platelets etc)

    When you looked at the city that it is pointing, you see that it is just a defenseless civilian city. The civilian city has good infrastructure, and its populous civilians are hard at work. (Think of this as the patient’s joints, kidney, liver, lungs, skin, brain etc)


    Missles were fired. Walls fell, civilians died, the city sends out distress signal to the rest of the world. (pain were sent through the nerves to notify the body on the attack)

    So when does the attack stop?

    Well it stops when the army becomes tired, and has to rest. So the army and the city stopped fire for perhaps a few hours. Get their food replenished, get their energy restored, refuel the battleships, fighter jets etc. (when you are asleep, there might be a temporary moment of peace)

    …… Until the next morning. And the cycle starts again.

    When the immune system wage a war at the healthy cells, it consumes energy within. The confused immune system continues their attack until their energy are exhausted for the day. They will rest for a certain period, and continue their attack if they are active. As a result, the patient will feel extremely tired every now and then when their lupus is active.

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