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The Subverting of the ME/CFS Mind

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 23, 2013.

  1. SanDiego#1

    SanDiego#1 SanDiego#1

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    Me Sci- What a beautiful written Post. How great that you are still inventing and still viable. These are wonderful traits to have. What type of treatment regimen are you on now? You can Personal message me if you want.

    A lot of very talented writers on this Post.

    San Diego #1

    San Diego #1
     
    MeSci likes this.
  2. SanDiego#1

    SanDiego#1 SanDiego#1

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    GREAT POST-TEARFULLY AND HOPEFUL IN READING IT!!!!!

    SAN DIEGO#1
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Thank for the compliments! :redface:

    I'm on a leaky gut diet and supplements, and pacing as stringently as I can when life doesn't get in the way!
     
    SanDiego#1 likes this.
  4. SanDiego#1

    SanDiego#1 SanDiego#1

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    MeSci- The Pacing is the hardest for me-as I like to finish what I start. Not possible anymore -or I am in beds for days.

    What type of diet for Leaky Gut? I am on Gluten free and no friend foods. Sometmes works sometimes not. Probiotic VSL#3 6 a day.

    Enjoy your comments.

    San Diego #1
     
  5. jeffrez

    jeffrez Senior Member

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    Lots of people go through difficult things in life. Some worse than ME/CFS. No one is exempt from tragedy - the problem comes with thinking life owes us something. Life is what it is, and usually that is shit and suffering, as the Buddha told us. Nothing owed, no guarantees.

    Note: just to say that doesn't mean I want to minimize anyone's suffering. I think it sucks, too.
     
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  6. SanDiego#1

    SanDiego#1 SanDiego#1

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  7. roxie60

    roxie60 Senior Member

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    I'm just too tired right now to expound but spot on girlfriend! That one part about hearing the neighbors go about their daily routine and they dont seem to care. I hvae sahred vegetables from my garden when I use to be able to have one. But no one seems to give a rats behind if Im alive. Ive been in this neighborhood 24 years. Im in the coutry to the south of you and my eyes have also been open never to see the same again. Stunning the people who claim to be friends and cared about you....I guess that only applies if you are well. Yes it is so hard, we get tired of talking about it but we are so isolated when we do get around people just feel my social skills have atrophied also. Thank you for writing this, I have been sharing some of my frustrations and anger in threads lately, I too use to be more forgiving and compassionate but how being unwell changes a person and those around them is stunningly sad. I'm glad this will be here on PR for posterity.
     
  8. SanDiego#1

    SanDiego#1 SanDiego#1

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    Jeff- no one expects any guarantees- however, I do think we should at least expect the Medical community to
    acknowledge WE ARE SICK !!! I am to the point that I don't even tell them I have CFID as they quit asking questions
    and have actually after 10min say " I can't do anything for you". Doesn't matter what part of the body you are having a problem with.

    I also know as I do Animal Rescue- there are some wonderful, caring people out there. Even if you do one nice unexpected thing for them-it always comes back to you in a good way.!!!! I have actually started writing HERO letters to people from my past that have been heros to me. Even from when I was a child. You would not believe how that touches someone. They mattered-so I matter.!!!!!
    Stay Well.

    San Diego #1
     
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  9. SanDiego#1

    SanDiego#1 SanDiego#1

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  10. SanDiego#1

    SanDiego#1 SanDiego#1

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    Me& Cat- I often write a post and forget I wrote it. Read it later and wonder who that person is-sounds familiar!!!

    Ha!!!! Think I have already written this but just in case. I could not find Peanut Butter the other day and my husband said (SARCASTIC) are you sure you didn't put in the freezer? I told him NO-THAT IS WHERE I KEEP MY CELL PHONE!!!

    LAUGH!!!!

    San Diego #1

    San Diego #1
     
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  11. SanDiego#1

    SanDiego#1 SanDiego#1

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    Daffodil- You are wrong. You just related to me. Start a Journal- even if it is a sentence.
    People do care- I care!!!!!

    Better Days!!!!

    San Diego #1
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I am already vegan, so no dairy, but the changes I made for leaky gut were to cut out gluten and reduce sugar and grains.

    Supplements are l-glutamine, sodium bicarbonate, omega-3, bone minerals (to replace those apparently lost in urine), alpha-lipoic acid and acetyl-l-carnitine. I can't remember what I started taking them all for except the first two: l-glutamine for healing the gut and sodium bicarbonate for reducing acidity.

    Not sure if I have seen you in any of the threads in this section but they will probably interest you:

    http://forums.phoenixrising.me/index.php?forums/the-gut-de-meirleir-maes-h2s-leaky-gut.9/

    Was 'friend foods' a rather apt Freudian slip for 'fried foods'? :D

    I'm not cutting these at all, as I think it's carbs that are the enemy rather than fats. However, I have switched from olive oil to coconut oil as I understand that it is more stable and less likely to produce harmful (oxidised?) breakdown products when heated.
     
  13. SanDiego#1

    SanDiego#1 SanDiego#1

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    MeSCI- Yes it was fried foods( you mean you don't understand CFID talk???) Ha. I will go to that website. Interesting about the Olive Oil and Coconut instead. May try that.
    Are you using the Krill oil for Omega 3's? I have done well with the VSL#3 for Gut. But also cut out dairy..
    When you say sodium bicarbonate-do you just mean baking soda or a capsule supplement?

    Best,

    San Diego #1
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Krill are animals, so no! I take this vegan omega-3.

    Yes, I take what you refer to as baking soda, in water.

    Maybe we should continue the discussion on one of the leaky-gut threads as we are going off-topic here!
     
  15. caledonia

    caledonia

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    Great article. I think a lot of the attitude comes from the good old Protestant work ethic. As long as you're able to pull your weight, you're all right, but if you can't, then you're lazy. Never mind that the Christian thing to do is take care of the least of your brothers.

    At any rate, this is exactly the reason I am volunteering to help Phoenix Rising with various tasks, so they will have the time to get the Community Rising website up and running. We won $10k in the Chase Giving contest last year to do this project. So we have the money, it's just a lack of volunteers that's preventing the project from moving forward.

    The Community Rising website/app will connect PWC's with existing resources in their community. So you need a ride to the doc, or you need some groceries or your house cleaned or whatever, you can find it on Community Rising.

    If you want to volunteer, contact the moderators and I'm sure they will be overjoyed to have your help.

    I'm volunteering to help proofread and edit articles such as the one that Jody just wrote. They ask that you know Wordpress, but I wouldn't let that stand in your way as a deterrent if you have editing skills. Wordpress is easy to learn and I would be happy to walk anyone through it.
     
  16. Bob

    Bob

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    Jody, a brilliant post, thank you. Hard-hitting, brutally honest, and poetically written. I'm certain that many of us relate to it.
     
    Wayne likes this.
  17. Bob

    Bob

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    Hi jeffrez. On the surface, this looks like a slightly dismissive post, but I think perhaps you are philosophising, and presenting a cognitive mechanism for coping with adversity? I sometimes feel guilty when I'm struggling emotionally with my situation and at those times I question whether I can't justify my negative emotions because there are people worse off than me. But guilt isn't a healthy or productive emotion, so I dismiss those thoughts, and allow myself to have my naturally-arising emotions, and to process them in my own way, whilst trying to keep some perspective at the most difficult times. So I acknowledge what you've said, and I understand it, but it's too simplistic an approach for my own needs. I suppose each of us on this planet has to find our own way to cope with our lives and our emotions, and this will often change from situation to situation for each person. (I personally find that acknowledging any personal difficulties, and allowing myself to experience any naturally arising negative emotions, without any guilt, allows me to process my emotions and move forwards.)
     
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Great article Jody.

    Another thing that gets to me is that no one is likely to even notice if I die (I live alone.) That does haunt me a bit and I email a friend every day as a safeguard--if she doesn't get an email she'll call to check.

    One thing that helps me deal with my situation is the historical perspective--not on ME/CFS but on life's conditions. Historical novels are an easy way to get a peek at what it was like to be poor or poor and sick in less "enlightened" eras. (and yes, I have time to read! :rolleyes:) I don't think there ever has been much regard for life in any society I am familiar with.

    No excuses for what happens today, but I feel less "alone" with the disregard.

    Sushi
     
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  19. Christian Godbout

    Christian Godbout

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    Bob, If you have a secret on how to process emotions, please let me in on it! Mine, I feel I can only withstand them - or not … I can certainly process my thoughts, but how I feel is another story. I believe there was a tad of humor in Jefferz' quote of Buddha, and every now and then, this attitudes helps me; when I crash for the fifth time in a same month, if I let my emotions naturally evolve, if I let them "be" , despair would become all-overwhelming, and in such times resorting to a philosophical commonplace à la " what can you do, life's a bitch" , can be helpful! (at least temporarily).
    Agreed, a cognitive defensive mechanism no less, or differently put, dark humor before adversity.
     
    Bob likes this.
  20. Wayne

    Wayne Senior Member

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    Thanks Jody for your eloquent article; and thanks to everybody here for your eloquent comments. --- Sushi, I have a hard time reading, but I do watch a lot of PBS specials these days. I too find it helpful to look at things from a historical perspective, and often find myself comparing my current health challenges with some of the difficult adversities people all over the world have lived with seemingly forever, and still do to this day. Makes me realize that nobody escapes a lifetime here without some sort of major challenges along the way, whether physical, mental, emotional, psychological, or more often than not, a combination of them all. --- It seems we're all at times like a child in the wilderness.
     

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