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Paralympics for people with ME?

Discussion in 'General ME/CFS Discussion' started by Firestormm, Aug 29, 2012.

  1. health_seeker

    health_seeker

    Messages:
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    Likes:
    38
    US Pacific North West
    Hi:
    Just wanted to add my own thoughts as someone ILL with CFS since 2006 and with a disability in the classic sense, (I've been blind since birth and have no usable sight). They are two very very different things. My blindness is a specific lack, incapacity, something that isn't there for me but is for the vast majority of other people. My illness is a weakened, disordered, unsound, infected condition that is generalized throughout my whole body and, unlike my blindness is made much much worse by extreme exertions such as competitive sport. As a blind person, the worst thing I can do is sit at home and do nothing. But having CFS, the very best thing I can do on many days to improve my chances of healing and of being of any use to anyone, is to LIE down at home and do nothing.
    I agree with Curr that the Paralympics are a means of promoting a view of the "deserving sick who do not allow their illness to limit them". I say this as someone who participated in similar competitions for the blind in the '70s. And I also agree with Firestorm that "fighting" and "striving" are important. But I think the things we strive for must be attainable and beneficial to us. I think to that the way each of us fights this disease varies with the type of CFS we have its severity, symptoms and whether or not it responds to treatment. For some like me "fighting" has been focused on aggressively pursuing treatment, while for others with a more severe and intractable form of this disease "fighting" is about working to be at peace with oneself and living the best life possible within the limitations imposed by this illness. In my mind, both are equally valid forms of "fighting" and worthy of respect and admiration.
    For all these reasons, I think our striving for excellence takes a different form to that of the sports field or the athletic track. It's a spiritual state of being, of wanting to give and receive the best you can in the moment, rather than the physical and mental exertion most people associate with striving. Here are just a few ideas of things I think people can be good at with this illness: writing -- whether it's a book, a journal, a blog, poetry, or just a few words reaching out to someone on this forum who is facing the desperation and hopelessness so many of us have encountered with this illness. Music: either performing it, or nurturing someone else's talent. It's one of the things I can do for my husband who is a musician. Visual arts: I wouldn't be much use in this area but there must be lots of people with ME/CFS who could excel at creating visual art using a computer that others would appreciate. And then there's just offering the best we can to those around us, whether it's family, friends, or someone we encounter online in a forum like this. None of these activities will receive Dow Chemicals sponsorship but they have the potential to touch other people's lives long after the excitement of this year's Paralympics has been forgotten.
     
    helen1, SOC, allyb and 3 others like this.
  2. health_seeker

    health_seeker

    Messages:
    42
    Likes:
    38
    US Pacific North West
    Hi:
    Just wanted to add my own thoughts as someone ILL with CFS since 2006 and with a disability in the classic sense, (I've been blind since birth and have no usable sight). They are two very very different things. My blindness is a specific lack, incapacity, something that isn't there for me but is for the vast majority of other people. My illness is a weakened, disordered, unsound, infected condition that is generalized throughout my whole body and, unlike my blindness is made much much worse by extreme exertions such as competitive sport. As a blind person, the worst thing I can do is sit at home and do nothing. But having CFS, the very best thing I can do on many days to improve my chances of healing and of being of any use to anyone, is to LIE down at home and do nothing.
    I agree with Curr that the Paralympics are a means of promoting a view of the "deserving sick who do not allow their illness to limit them". I say this as someone who participated in similar competitions for the blind in the '70s. And I also agree with Firestorm that "fighting" and "striving" are important. But I think the things we strive for must be attainable and beneficial to us. I think to that the way each of us fights this disease varies with the type of CFS we have its severity, symptoms and whether or not it responds to treatment. For some like me "fighting" has been focused on aggressively pursuing treatment, while for others with a more severe and intractable form of this disease "fighting" is about working to be at peace with oneself and living the best life possible within the limitations imposed by this illness. In my mind, both are equally valid forms of "fighting" and worthy of respect and admiration.
    For all these reasons, I think our striving for excellence takes a different form to that of the sports field or the athletic track. It's a spiritual state of being, of wanting to give and receive the best you can in the moment, rather than the physical and mental exertion most people associate with striving. Here are just a few ideas of things I think people can be good at with this illness: writing -- whether it's a book, a journal, a blog, poetry, or just a few words reaching out to someone on this forum who is facing the desperation and hopelessness so many of us have encountered with this illness. Music: either performing it, or nurturing someone else's talent. It's one of the things I can do for my husband who is a musician. Visual arts: I wouldn't be much use in this area but there must be lots of people with ME/CFS who could excel at creating visual art using a computer that others would appreciate. And then there's just offering the best we can to those around us, whether it's family, friends, or someone we encounter online in a forum like this. None of these activities will receive Dow Chemicals sponsorship but they have the potential to touch other people's lives long after the excitement of this year's Paralympics has been forgotten.
     
    KathySkes, currer and redrachel76 like this.
  3. currer

    currer Senior Member

    Messages:
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    775
    Health seeker, I couldn't agree more. Thanks for your post.

    I used to know woman who had a severe muscular disability since birth, who managed fine witrh her disability, even though it was clearly affecting all her muscles, until she got ME. It was only then she had to give up work and became much more limited in what she could do.

    She continued her life, though and left home and got married. But she was very amused by others perceptions about her condition.

    They were very sympathetic about her muscular disability, which was obvious, although she said to me that it had never bothered her, and that the ME was much worse.

    She was immediatedly passed as unfit for work by the medical tribunal, on the grounds of her muscle disorder, even though she had always been able to work with it until she got ME.

    She only claimed a disability benefit because she was unable to work due to ME. But she knew that the only reason she had no problem in getting a disability benefit, unlike others in the group who also had ME, and had repeated refusals, was because of her other "disability"
     
  4. health_seeker

    health_seeker

    Messages:
    42
    Likes:
    38
    US Pacific North West
    Currer:

    That's exactly the position I'm in. I get disability income because of my blindness not because I have CFS, even though I've been blind my entire life and have worked when an employer has been willing to give me a chance. It's only since I got CFS that I've been physically unable to work. Like your friend, I get pity and sympathy for being blind, something I really dislike, but it's the CFS which interferes more with my daily life
     
    currer likes this.

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