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Article: Becoming Visible In Vermont: "Invisible" An ME/CFS Film

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 25, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. illsince1977

    illsince1977 A shadow of my former self

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    Accept? I get it, and yet I feel like my very existence is owed to my not accepting. I'm totally bedridden and in agony most of the time. I don't know; it just feels like acceptance for me pretty much means dying.

    Maybe endless accomodation and realizing you must live with a chronic illness would be more a accurate description.
     
  3. Cort

    Cort Phoenix Rising Founder

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    Yes, for Rik it lead to some healing and improved quality of life in the midst of his still severe disability. Its no magic pill - that's for sure - just hopefully improved quality of life. I know how inadequate that sounds in the midst of such a severe illness..:headache:
     
  4. ixchelkali

    ixchelkali Senior Member

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    I don't think that "acceptance," in this case, is the same thing as capitulation. It's not giving up hope, it's not giving up trying to get well. It's simply a recognition that what is, is. A giving up of denial and dealing with a new reality.

    Thanks, Cort; I've ordered my copy and look forward to watching it.
     
  5. justy

    justy Senior Member

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    I bought a copy of this film last year and watched it with my husband (in the U.K) Yes its not a hollywood blockbuster, but it was worth it just to hear my husband say that listening to the stories in the film was just like listening to me. It made me feel that he at last "got it" and could see that this was an illness that others suffered from. He kept saying "she sounds just like you"

    Yes i agree re acceptance, this is not the same as giving up, more a recognition of what is, wether that be suffering or joy. I know if you are very ill it is hard and perhaps a difficult concept, there have been many times when i have railed against acceptance. But it reminds me of when i worked with women who were preparing for and giving birth. We would discuss how much more it would hurt and how much harder it would be if you resisted what was happening in your body. From my own experience of giving birth 4 times i would say that i got through it without drugs by accepting what was happening to me and not fighting. When i said i cant do this and screamed and cried, i can tell you it got an awful lot worse!
    I dont know if this analogy works, but it makes sense to me.
     
  6. Cort

    Cort Phoenix Rising Founder

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    That makes it all worth it, doesn't it?

    I agree that resistance to the illness and what it causes, as odd it sounds, makes things worse....It's a mind-bender but for me, at least, it's clear that that's true.
     
  7. Emmanuelle

    Emmanuelle

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    I bought the film from the ProHealth website and watched it last night. I thought it was well done and gives a pretty good picture of the illness. I'm debating whether to share it with some relatives ... ( I admit that I cringed a bit when Rik, who had talked so much about how much time he spent in bed, said that getting a dog forced him to go out for a 30 minute walk every day ... Kind of makes it sound like we can do it if we just want to enough ... ) Anyway, I 'd like to see more films like this.

    Another really good, older documentary is "I Remember Me". I forget the name of the woman who produced it, but it's available on Netflix and Roku.
     
  8. Live And Let Die

    Live And Let Die Senior Member

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    While I'm more functional than most, I found having my son forced me to do things on a daily basis. I have to take care of him at 8am everyday no matter how I feel. I think there is a difference to what some can get through without crashing. Before he was born I was a mess, especially with sleeping hours. I'm still a mess LOL but now I know what I can push through and do and what a can't do without crashing.

    Cort, I now understand what you mean by acceptance. You are right, fighting it will make it a lot worse. I resisted for years, not knowing what I had. Acceptance is key.
     
  9. Cort

    Cort Phoenix Rising Founder

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    I was surprised at that and asked him about it....(I just added it to the review)

    You can that this formerly very vigorous guy is still not very vigorous...He used to run his own business...not he's happen holding a boom at a country market a couple of days a week....So it goes!
     
  10. Marlène

    Marlène Senior Member

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    I can accept it till my money runs out but then what ...
     
  11. Cort

    Cort Phoenix Rising Founder

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    Good luck iwth the money situation Marlene. If you're thinking about 'acceptance' then not having money is a harsh test - as is being in poor health...(Of course its the negative circumstances that drive the need for acceptance. - we usually accept the positive ones quite well.

    Acceptance never implies that the circumstances will change and it has nothing at all to do with changing them (altho sometimes it does indirectly help that)...it focuses on altering ones stance towards them so that at least they are not as disturbing as they might be.

    I wish you the best of luck with your money.....I wish we could find ways to get around that. One way ultimately is to get the medical profession to 'accept' ME/CFS as a legitimate disorder that they have a responsibility to fund and research according.
     
  12. Liz

    Liz

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    I agree with the whole shebang except for the "acceptance" debate. I was going to say that this blog entry made me feel less alone, which is true. The part that troubles me is that while acceptance is necessary, I find it to be a very dangerous word because even if I accept that I'm bedridden, I'm still not getting up. And I'm glad that Rik can work and walk. I suggest that these abilities are owed only in part to acceptance and quite a lot to the fact that his body has grown somewhat stronger than CFS/XMRV.
    I wish that those of us who are bedridden weren't so sensitive to other patient's triumphs... I would love to walk and hold a broom and pontificate about how I got there. The trouble with his apparent success is that nobody can say exactly how he got there and those of us still confined to bed know that walking and working are less about accepting limitations and more about the body physically overcoming them.
     
  13. Cort

    Cort Phoenix Rising Founder

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    Agreed. I'm sure acceptance and his focus only on healing and not on doing helped as did the passage of time for him and I'm sure other things that we don't know about. I think many people do get a bit better over the passage of time and others people get worse and others fluctuate, sometimes really dramatically.

    I would never say that acceptance is necessary for getting better only that in general it can help. I think of it not as a key to getting to well but as an aid to feeling better - a way to remove just one additional stressor from our lives.

    I hope that at some point the only people who are working on 'acceptance' are those who are doing so out of their choice to engage in some sort of 'spiritual' path not because they are doing so in order to ameliorate some of the strains of a difficult illness.
     
  14. caledonia

    caledonia

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    I would define acceptance as realizing that your state of health has changed permanently, and that, in lieu of any better alternative, you need to totally change how you do things in order to have some kind of quality of life.

    That means you stop pushing and crashing, and start resting when your body demands it, which should help you feel more consistent at a low level of functioning. But it's no cure, just a way of coping.
     
  15. Enid

    Enid Senior Member

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    Always found it such a fine line between fighting and acceptance. Yes no Medics have helped - sort of on one's own - yes delighted in research and findings and any aids that have helped fellow sufferers. But from bedbound and 11 years ago with the very worst (now chronic but not as severe fight on being a little more able) Its a fairly heartsinking moment to realise that this is a disease that few understand (certainly not in the UK) and go on from there. And now "we" do. And also now do only as able. From bedridden to the sheer joy of walking down the street - heaven !.
     
  16. justy

    justy Senior Member

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    I would like to agree with the posts above re acceptance being part of a coping mechanism, and not in itself curative.
    I posted earlier in this thread and am very aware that i dont want anyone to feel that i was promoting acceptance as a recovery tool, but rather as a tool for living with a chronic health condition.
    I have been on the recieving end of other peoples desire to tell me to sort out my feelings etc in order to get better and this plus saying you'll get better if your positive enough riles me no end.
    So just wanted to say that i wasnt suggesting this at all. I try very hard on a daily basis to use acceptance not as a recovery tool or as a way of giving in; but as a way to keep my sanity and try to make the best of the life i currently have.xx
     
  17. Enid

    Enid Senior Member

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    Justy - never ever doubt sanity - acceptance is a tool only to meet each day (a different more restricted way of life only) and in the particular ignorance in the UK enjoy yourself in simpler pleasures. For that I wish for the whole ME "story" is now being revealed.
     
  18. Emmanuelle

    Emmanuelle

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    Cort, Thanks so much for "clarifying" about Rik's walking. I feel better... :) I was really touched by the story about holding the broom at the market ... Yeah, I get it. He's a great guy, very positive, which came across in the film. (I hope my comment didn't make him feel bad ... :( ) Anyway, thanks for everything.
     
  19. Emmanuelle

    Emmanuelle

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    I wholly concur with what Caledonia, Justy and Enid said above. Acceptance has helped me emotionally, mentally and spiritually. Physically, no. I'm actually worse physically now than when I began practicing acceptance. But I'm SUFFERING less because I'm not torturing myself with questions about what is it, why me, will it ever go away ... (Well, except sometimes ....) It is what it is. I move on from there and do whatever I can to have the best day that I can. And I think that's key also: I try to focus on today, this moment, rather than think, oh crap, am I going to feel like this forever? It may sound Pollyanna-ish, but it's not denial, it's not whitewashing, it's just ... This is my life. Somebody else has a healthier body, someone else is worse off. This is what I've got-- today.

    AND-- even Eckhard Tolle (who has made all the difference in my life) says that if you can't find acceptance-- accept that. I guess it's about stopping the fighting. I don't have the energy to fight what is anymore. There's a difference between resignation and surrender. I see acceptance as surrender.
     
  20. Dreambirdie

    Dreambirdie work in progress

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    Hey You All--

    I am appreciating the thoughts on this thread about acceptance, which I can be pretty good at some times. Lots of training after 33 years of this *KRAP.* :rolleyes:

    And then there are those days (too damn many this year!), where I just need to get in the bathtub and wail at the top of my lungs at how much I HATE HATE HATE this disease and all the fucking limitations it has imposed on my life.... which I can be really good at too. ;)

    So in some instances accepting total non-acceptance can feel like a big relief as well.

    We're all just doing the best we can, aren't we? And overall, I think we are pretty amazing. :In bed::balloons::balloons:
     

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