Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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http://www.cfidsreport.com By Craig Maupin

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by muffin, Aug 29, 2010.

  1. muffin

    muffin Senior Member

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    What Kind of Freedom?

    Remembering Our War, and Considering Our Future


    By Craig Maupin at http://www.cfidsreport.com

    Craig does such a great job in capturing and crystalizing issues that others have not thought of. He has hit the nail on the head with what happens to the young and others AFTER we get this disease cured. What will happen to those children who were sick in bed for their childhood and teen years? What skills will they have? They will have missed so much of their critical life and how will they play "catch up".

    Read Craig Maupin's blog. His writing is amazing.
     
  2. Ash

    Ash aka @smashman42 'SortaDerpy' on Twitter

    Read that in a link on Facebook yesterday, top read!
     
  3. caledonia

    caledonia

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    That's nice that we can at least think ahead to being cured.

    They're cutting AIDS drugs funding in my state.
     
  4. shiso

    shiso Senior Member

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    I liked the piece too. Both because it assumes we are going to get well and it presents yet another, non-obvious but profound consequence of loss resulting from this disease.

    I hadn't gone to the site in a while - I'm glad I found it again. Thanks muffin for posting.
     
  5. TomStones

    TomStones

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    The idea of what happens "after" has been one that has plagued my thoughts during the brief spells of better health i've experienced. I know that i can't once more become the person that i was before the illness since i have been so mentally changed by my experiences, a little for the better , a little for the worse. Not that i would want to become a fifteen year old boy once again.

    One of my main fears is that i have only managed to keep going through hard, hopless years by tapping into a deep well of hatred that, living in the UK, i seem to have no problem refilling. I have fears that i will not be able to go back to living life in a positive manner, with love and peace in my heart.

    It's a curse of this disease, to have my life reduced to the sheer animalistic hatred of each and every person that i feel have conspired or colluded in keeping us all trapped in misery. It probably reflects badly on me but i won't be happy until i see those people punished by the full weight of the law.

    Afterwards? I want really just want to go hiking again, great long hikes as far away from civillisation as i can manage.
     
  6. Sasha

    Sasha Fine, thank you

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    Excellent find, muffin, thanks for posting. The direct link to that specific article is:

    http://www.cfidsreport.com/News/10_What_Kind_Of_Freedom.html (or click here). Feel free to cut & paste into your original message!

    I had a period of several years of partial remission that I mistook for recovery (oops) in which I went gradually (over years) from being bedbound to being able to live independently and work full-time. When I was ill, I had imagined that life would be great when I was recovered and that I'd feel really happy. In fact, life was a real struggle - I was fifteen years behind in my career, which made me feel like a failure surrounded by people at my grade young enough (just about) to be my children; I had no partner and had re-emerged into life too late (for a woman, at least) to have much chance of finding one to my liking; everyone else had paired up and I felt a bit of a freak being single when everyone around me was in a couple. There was such a stigma to ME (in the UK) that I felt I had to be very careful about who I told about my history (I later found that someone at work had spread around the department the idea that I had been mentally ill despite having been sympathetic to my face). But by trying to keep my history secret for my own protection, I felt as though I was cutting people off and living a lie. Et cetera.

    On the other hand, my old friends (with only one exception) had stayed true and in touch; my family had cared for me, supported and believed me; I made new, sound friends during the early stages of my independent living who knew all about my history and didn't care about it (except to be supportive); and many other good things happened.

    I think that being housebound/bedbound bends one out of shape; in some ways for the good, in some ways causing damage. Getting better doesn't fix that damage automatically and presents new problems. This time round, I've realised that I have to do some work on myself if I'm going to be prepared for recovery in a way that allows me to get the most out of it.

    One thing that interests me is meditation. I've been reading a lot about neuroplasticity (the ability of the brain, even the adult brain, to rewire itself due to certain kinds of training) and meditation - the science is now backing up claims that meditation (non-religious, anyone can do it including atheists) can help you to be happy and at peace with yourself, and well-disposed to others, even in the most difficult circumstances. I'm trying to find a structured course that I can do at home.

    I've also been considering counselling (though I wouldn't seek this via the NHS for fear of it ending up on my medical records). I'm not sure about it, but I've been wondering if I maybe need some help to come to terms with the accumlated losses of over 20 years of illness. I don't want to get well and then still be dragging my illness around with me in my head.

    I'm so sorry, Tom, that you are so angry, but I can completely understand why. I think one of my coping strategies when I was younger was to internally disparage the things I was missing out on to lessen the pain of losing out on them. However, when I came to "recover" I found that I wasn't able to enjoy good things as much as I had expected, perhaps because that strategy had blunted my capacity to value good things (not in a healthy "detachment" way but in a rather unhealthy "contempt" way).

    Maybe now's a good time to review how we're coping mentally while we're still sick and review whether those really are good coping mechanisms. I know that some of mine aren't, and when I examine them, they seem to be ones thought up by the much younger self I was when I first got sick.

    I'm not sure if I'm older and wiser or just older and weirder now but with at least some prospect of recovery with the XMRV work I'm starting to try to re-examine my assumptions about how I should deal with the world now, and what I want for the future.

    Interesting times, as they say...
     
  7. Wasbeer

    Wasbeer

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    I've been thinking about this a lot lately. I mean; you can't help but wonder what a future 'without' CFS would look like after all these years. It's exciting and scary at the same time, and when I think about it more, I always come to the same conclusion. Our CFS-experience won't be over when it's over. We will all sometimes, in more or less ways, feel like aliens when we have to learn to live in the normal world again.

    I think we will still need each other very much, as a community, to share all these unique experiences and feelings that only those who live it can relate to. So please don't terminate Phoenix Rising on that day (mega-jinx!) all CFS-patients are cured. We should stay in touch.
     
  8. Overstressed

    Overstressed Senior Member

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    Hi wasbeer,

    how do you define 'cured' ? Being able to function ? Eradication of the virus ? If it's about eradication of the virus, then I think it's too optimistic, and I don't want to sound pessimistic. Psychologically, I find it extremely difficult to get used to the thought of carrying a retrovirus. But maybe it's because of the fact I acquired the virus in a complete different way as most folks on the forum did.

    Vriendelijke groeten,
    OS.
     
  9. Wasbeer

    Wasbeer

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    Yes, in this context I mean being able to function, even if it's not 100%. I mean cured from from being bed- and or housebound.
     
  10. CateK

    CateK

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    Yes!! After the first euphoria (hiking! movies! eating out! birding! concerts! hiking!) I started worrying. How on earth will I find a job and support myself when my work experience is 11+ yrs out of date, and I'm approaching 60? (Wait, I was 44 the last time I looked.....) Who is going to hire me? How do I get health insurance if I'm not on Medicare? And that's just the practical, not even thinking about the emotional/social adjustments.

    OTOH, I refuse to hope that I reach 62 before effective treatments are available.
     

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