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Thread: how to expaline to someone who has not clue

  1. #1
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    Default how to expaline to someone who has not clue

    I have tried to explain to someone about lupus even used the spoon theory, but it did not relay what I felt they needed to know or understand, we even watched love simple didn't show enough of what we go through. So does anyone else have any ideas on how to explain or show someone about lupus. ?
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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    Have them visit WHL. We'll set them straight.

    Seriously, it is difficult to explain. It's hard enough for me to understand what is involved: trying to explain it to someone else is crazy.

    I struggle with the same issue and am interesting in hearing from of the more experiened members.

  3. The Following User Says Thank You to running girl For This Useful Post:

    leaann (04-20-2012)

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    Yeah I am hoping for some good answers or help, it is just annoying me that I can't some people to realize what this is and how it effects me. So treat me as if I will break and some treat me as if I have a cold and can get over it. Nothing seems to help the 2 groups understand.
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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    Theres just some people who wont ever completely understand. Sorry but you will always have to deal with those people nothing against them but I have yet to figure out why. I just tell them to remember when they had the flu thats how I feel all the time.

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    this link has been useful for me.

    http://notdoneliving.net/openletter/cfsfibro


    i have written it out in whl lupus also

    http://forum.wehavelupus.com/showthr...hout-CFS-Fibro-…

  7. The Following 3 Users Say Thank You to steve.b For This Useful Post:

    leaann (04-21-2012), Shine (04-22-2012), tgal (04-21-2012)

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    Thanks Steve,
    The person I need to convey this to doesn't really like to read so i was hoping more movie like or something. I am still looking on the net to see what I can find.
    But thanks anyway. I am sure I will come up with something.
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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    Quote Originally Posted by leaann View Post
    Thanks Steve,
    The person I need to convey this to doesn't really like to read so i was hoping more movie like or something. I am still looking on the net to see what I can find.
    But thanks anyway. I am sure I will come up with something.
    I did find the spoon theory on youtube, the speaker who read the essay did a great job and really kept me interested.

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    Leaann,
    "Love and Other Drugs" is a good movie to watch. The character doesn't have Lupus (I think she has MS, but can't remember), but she goes through some of the same frustrations that we have. The way that her boyfriend learns and evolves might be especially helpful for you to show to your friends.
    Hugs,
    Marla

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    Quote Originally Posted by steve.b View Post
    this link has been useful for me.

    http://notdoneliving.net/openletter/cfsfibro


    i have written it out in whl lupus also

    http://forum.wehavelupus.com/showthr...hout-CFS-Fibro-…
    Thanks for the link to the letter Steve. It was helpful when discussing things with my mum the other day. She said "maybe you're depressed from sitting around and not working...maybe you could go out and do more or just start a job and see if you manage?" Whenever someone says that I always feel like I really have to argue my case and I get very defensive. I just said to her what it says in the letter..."If I could do more, I would." It also helped to tell her that I had been doing things, going up and down the drive on the push bike etc...but pointing out it made me feel worse, not better.

    I still feel like she and others think I'm mostly responsible for how fatigued I feel. It upsets me because I'm not choosing this. I've actually questioned myself and thought "Is this my fault? Maybe I can just pull myself out of it." My partner has even said things that suggested she believes a lot of this is my own doing, through negativity.

    It's hard enough dealing with this crap without actually being blamed for it too.
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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  13. #10
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    Keep your head up! At least we have each other. I know how you feel too. My mom thinks I shouldn't do ANYTHING or I'll die but my husband is quite the opposite. He tries to get me to help him pick up super heavy things and do pretty hard outdoor labor. I have to remind him that I just can't do it. I feel awful for that. My best friend wants me to go to Zumba all the time. I can only handle twice a week. She just keeps at me to come. The other day she asked me if I "really" have Lupus. I said, "do you think I'm makin it up?" it's all new so I guess everyone isn't settled yet. I might need to get a shirt that says "I have Lupus" or a note from the doc just to remind everyone! Humans are primarily self absorbed so we are all thinking about our own problems I guess. Remember to take care of yourself! You are the only one who will.

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