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"So you're really faking it?!"

Discussion in 'Lifestyle Management' started by jshu43, Sep 24, 2010.

  1. Orla

    Orla Senior Member

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    Great post river,
    Orla
  2. Nielk

    Nielk

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    If you can't count on family members to understand who can you count on?

    It was my birthday yesterday and my children and grandchildren came over to celebrate with a cake.
    I was talking to my son-in-law who is a lawyer telling him how inappropriate the CDC has been to us CFS sufferers and
    how they disalocated funds that were earmarked for CFS. He said that it's very hard to prove that they did anything wrong to us
    and he was in middle of explaining, when my daughter-in-law says (real loud) "well if you would sue them and the case would go to jury
    and they find for example that the money was used for cancer research don't you think the jury would be siding with the CDC?"

    I felt like she just punched me in the face. I didn't realize till then how she felt about CFS but, obviously she agrees that no money should go to study CFS
    as long as there is cancer in the world. As if CFS is like having a cold or worse lazy people complaining about imaginary symptoms!
    This is from somebody who has seen me suffering since she met my son (3 years ago).

    At least now I know how she feels.
  3. leela

    leela Slow But Hopeful

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    Couchland, USA
    :thumbsup:"Indeed. And if Child Services came to your house and gave your children away to a REAL mother, and you sued them, don't you think a jury would
    side with the REAL mother? Oh and Happy Birthday to me."
  4. markmc20001

    markmc20001 Guest

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    Keep in mind river, that each person gets sick differently. The guy you mentioned who works and comes homes and collapses may acutally be sick. He might even be on a crash course to being sicker.

    Hard to keep an open mind to how each person has individual problems. My father who I lived with as a teenager couldn;t even remember that I was sick. however, I was the same way for years. Barely making it and collapsing every evening and on weekends.
  5. Nielk

    Nielk

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    (No sane human being would ruin his life in order to pretend to be sick.)

    That's why many people think that we are insane.
    They don't believe the misery that we are going through because they themselves have never
    experienced it and unlike heart disease, they have not heard of CFS being a legitimate sickness.

    My own daughter-in-law who has known me for three years intimately and seen me being bed bound and
    suffering with crazy headaches, doesn't believe this illness exists.

    How can we expect strangers who don't really know us to accept it?

    I keep telling myself that it doesn't matter what others think, I know what I am feeling.
    Yet, who am I kidding, everyone needs validation and acceptance.
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    at funeral of great aunt, they wanted me to carry and lower the coffin, um, no way
    don't think they got it and ostracized me afterwards, sigh
    hate HATE that even when well and wish folk would stop that practice, causes too many accidents anyway (not funny)

    I tell folk I have ME, not CFS, CFS was designed by Wessely and anything he or Strauss etc does can rot in Hell!
    I explain it's like having the Flu, all the time, and most of them get that that is very bad.

    a very few twits who are bigots/nasty, I've suggested how would they liek risking me biting them and infecting them, if they think it doens't exist?
    "ah not so damn cocky now, are you, smart arse?"
    hehe ;)
  7. Nielk

    Nielk

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    I wish I could be as open and witty as you!
    I feel so weak physically that I think it affects the way I feel about myself.
    Like I'm not strong enough to answer with a good comeback.
    I just sit there like an utter fool!

    Didn't used to be that way.
    I used to have a strong personality and fought for what I saw was right.
    Their put down really works. (for me)
    I feel useless although I know logically it doesn't make sense.
    I'll blame it on the illness - being so sensitive.
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    NIelk
    well, part of itis since I live with my Mum, I used ot look after her, now we look after each other, sigh, it makes life easier for me than many
    I'm also in "Moderate" severity, I can go a short walk once a day etc unlike many poor sods here who're house/bed bound
    I'm on testosterone injections which has put a lot of the pep back in me...dunno about "Roid Rage" but I sure wanna do some circumcision with my teeth on on the gits who've been screwing us over with their psychobabble etc, lol :p

    always had zero tolerance for scum, had enough to do with 'em all my life, just cause they have an MD, PHd and a tie makes 'em no damn different than the pinhead inbred scum who use knives or drugs or whatever.
  9. Nielk

    Nielk

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    First of all, i love you Scottish way of talking.
    I also love your no nonsense approach.
    I'm glad the testosterone injections are helping you.

    I also have family around me but not all are supportive or understanding of what I'm going through.
    I am too timid to stand up for myself and I don't want to cause any friction in the family since
    that would put an even larger strain on me. (emotionally)

    It's much healthier to be like you and just say it like it is.
    I'm proud of you.
  10. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    doh
    sorry for typos, sigh. I always talked/thought faster than I typed, but it's ridiculous now with this damn illness, often can't even see/understand/know it's a typo, grrr!!!!!!!!!!!!!!!!!!!!!!!!!

    Well, if you could hear my, you may not be able to understand me since our accent is so thick, hehe ;) so best reading me I think :p
    thought it was funny they had do subtitles for "Train Spotting" and "Taggart", hell even folk in the UK can't understand us at times, lol.
    We sound like demented gerbils on speed and acid ;)

    yeah I can appreciate that, sigh, when yer bad off with ME, just surviving's hard enough, stress form family, ugh, hell no way! :(
    took my folsk years to accept this, dad doesn't, but dad is...well *rolls eyes*

    alas one problem with speaking your mind is...it tends to upset folk...so while I'm actually a nice guy, it's...wlel I don't like being mean or unpleasant, but sometimes you have to tell folk to "F' OFF!" or jsut "grow the hell up and THINK!!", at some point, sigh.
    "S**t or get off the pot" as they used ot say.
    I'm running out of time, folk in my neighbourhood have short lifespans anway, oh joys...and that's without ME...and I'm sick of this FOUL disease, so, cut ot the chase, ya know? :)

    Proud...I've not achieved much in life, I'm no angel so I don't think I deserve that praise, but thank you :)
  11. Daffodil

    Daffodil Senior Member

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    my uncle has declared that because stress worsens my condition, that is proof that it is psychological.
  12. lucy

    lucy Senior Member

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    It is the same like saying "If you sleep with your shoes on, you get a headache next morning" (because people who sleep with their shoes on are usually too drunk to take them off). Or, because we see the sun travelling in the sky, it is the proof that the sun rotates around the earth. He must have a degree in logics.
  13. Emmanuelle

    Emmanuelle

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    Silverblade, you made me laugh! You are very funny. I love your "accent" too!

    Regarding the inability we all seem to have to think of a good comeback to insensitive comments: My husband, who's a psychiatrist, (No, no-- he's a good one, not like those other idiots ...) told me about a phenomenon called a "brain blush". I was once bemoaning the fact that I stood like a total fool when a man made a sexual comment right to my face and in front of my then boyfriend, (the shrink). I was so upset with myself for not saying something witty or cutting to the guy, (yes, my BF did). He explained that when shamed like that, our brains, (even healthy ones), "blush"-- meaning they kind of freeze up, can't think for a moment. I guess it's a variant on "fight or flight"-- like we've been psychologically "attacked" and just freeze as a defense or something.

    Anyway, food for thought. It's not our fault. (And I still wish I could think of something to say to those insensitive folks. ... What about "Why would you say something like that?" or "Why do you say that?" or "Are you really as stupid as you sound?" ...... :)
  14. Nielk

    Nielk

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    Silverblade,

    PHP:
    folk in my neighbourhood have short lifespans anway,
    Is that really true? Why do you think that is?

    Maybe you should move away, if that's a possibility.

    Nielk:In bed:
  15. Nielk

    Nielk

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    I like the last option best!
  16. JamesK

    JamesK

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    But you wouldn't.

    If you had his body, you'd then be him, as he is now. Meaning you'd be doing exactly as he is, now.
  17. Nielk

    Nielk

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    Not necessarily. Just because you have his body you wouldn't have his mind and drive to do things.
  18. JamesK

    JamesK

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    Your mind is a part of your body, just like every other part.
  19. Nielk

    Nielk

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    This is bordering on philosophy but there is such a thing as self whether you call it a soul or spirit that is not attached to the
    physical body. We are not just robots. I would think that if I were to be able to slip into someone else's body, I would still
    be me and my spirit and make the decisions that i make as "me".

    Do you think that anyone who would have your body would intrinsically be "you" with your character, morals, way of thinking
    and feeling. Are we just a product of the parts that make up our physical body with no free choice as to how to act?
  20. Esther12

    Esther12 Senior Member

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    We were just discussing this here (from post 42): http://forums.aboutmecfs.org/showth...quot-all-in-the-mind-quot&p=152847#post152847

    "We have a soul, but it's made up of lots of little robots"...

    It made me want to do some more reading on all this stuff. I'm not sure if there's been anything interesting on it recently though.

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