A day in the life of a CFS sufferer

Discussion in 'Fibromyalgia Main Forum' started by outofstep, May 12, 2009.

  1. outofstep

    outofstep Member

    This was linked to the CFIDS Association's facebook page-a patient, Kym Bogan, did a sort of photo journal about her life w/ CFS-you click on the photos to enlarge and read about them. A lot of people should be able to relate to this:

    http://www.facebook.com/album.php?aid=81210&id=653467917
  2. AuntTammie

    AuntTammie New Member

    I appreciate your posting this, but I can't get it to come up on my computer
  3. outofstep

    outofstep Member

    Maybe you need to be on facebook? I just registered with them to be able to get to advocacy pages-not a big facebook person so not sure exactly how it works. Maybe someone else knows if you can access facebook without joining?

  4. AuntTammie

    AuntTammie New Member

    I am on facebook, but I really don't know much about it at all....just use it to correspond with some friends who have moved
  5. outofstep

    outofstep Member

    sorry it's not working for you-it works okay for me but does load a little slowly-it just a white screen and then the photos show up after a few seconds.
  6. hatbox121

    hatbox121 New Member

    That was a good photo tour of her life. Thanks for the post.
  7. outofstep

    outofstep Member

    oh good-glad that you were able to see it
  8. jasminetee

    jasminetee Member

    You have to join Face Book and then click on each photo to get the narrative.

    This was a clever way to show a day in the life for us.
    Thanks,
    tee
  9. skeptik2

    skeptik2 Member

    Who sees it but others with CFS/ME? OR Fm?

    I don't think these Facebook pages really spread awareness to those who don't already know about the disease.

    skeptik2
  10. outofstep

    outofstep Member

    thanks for the clarification re: accessing it!
    I thought that she did such a good job showing how small her world has become and how much the illness has impacted her life-glad that you liked it too!
  11. outofstep

    outofstep Member

    This person's photo essay is just linked to the CFIDS page-I don't know what her motives were for documenting a "day in the life". She does a great job of demonstrating the limitations imposed on her life by this illness mostly via photos-who knows if she did it just to show friends and family, or if it was done because she wanted a larger audience to better understand the impact of the disease. It would be great if something like this could be shown at one of these govt. meetings-and maybe it will be now that so many people have access to it.

    re: spreading awareness-The CFIDS page already has over 1000 fans-and there are probably a lot more people looking at it. A lot of advocacy groups are using facebook now-it's a good way to organize and communicate with a large number of people.

  12. street129

    street129 New Member

    see it, its depressing enough.........sorry
  13. outofstep

    outofstep Member

    I won't try to make you street129 :)

    I didn't think that it was depressing though-it looks like she has a nice life despite the CFS.
  14. AuntTammie

    AuntTammie New Member

    I have no idea what i am doing wrong, but I cannot get this to come up....I have a facebook account, but when I go to it, I cannot get anything to come up for the CFIDS Association....I have even copied and pasted the link from the CFDIS association page onto my facebook page search and....nothing - it says that it can't find the CFIDS association
  15. jasminetee

    jasminetee Member

    Just put the URL in the Location Bar at the top of the window. This is the text box where the URL shows up for whatever page you are on.

    So maybe you don't have to be a member of FB to view it.

    tee
    [This Message was Edited on 05/18/2009]
  16. TigerLilea

    TigerLilea Active Member

    Deleted my message - Obviously I misunderstood your reason for posting this Facebook page in the first place.[This Message was Edited on 05/18/2009]
  17. TigerLilea

    TigerLilea Active Member

    Copy and paste the link below and it will take you first to the sign in page of Facebook, and then once you are signed in, you will go directly to Kym's photo album.

    www.facebook.com/album.php?aid=81210&id=653467917
    [This Message was Edited on 05/18/2009]
  18. outofstep

    outofstep Member

    I think that Kym has a nice life despite her CFS because she has a nice apartment, her mother buys her groceries for her and does her laundry for her, and Kym is able to go to parties and talks to her friends on the phone. She's not a stereotypical CFS patients in those respects. Many people, especially those who have been sick since the 80s are poor, don't live somewhere nice, have lost their support systems, and have little mobility.
    I have a lot of empathy for those who are in desperate situations and I think that they need support, not criticism.
  19. AuntTammie

    AuntTammie New Member

    Thanks to those who offered help....I actually was doing exactly what I was supposed to, but for some reason it was not working.....tried it a few more times and it finally worked