1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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New on http://visitingmrssmith.com - Bastard Disease: legitimate and illegitimate illness.

Discussion in 'General ME/CFS Discussion' started by persuasion, Jun 9, 2014.

  1. persuasion

    persuasion visitingmrssmith.com

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    Lots of articles written by the seriously chronically ill for the seriously chronically ill including:
    What is illness?
    Why the ill are unattractive.
    Let's laugh at the seriously ill.
    How kids see our illness differently.
    The difference between illness and disability.
    And more...do come and visit and tell us what you think.
     
    Last edited: Aug 23, 2014
  2. ahmo

    ahmo Senior Member

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    @flaxhigh I have to say, I cringed when I read the title of your post. But I'm truly touched by the thoughtful article you've posted. And the blog as a concept. You are so fortunate to have drawn together as a couple and family, instead of pulled apart.

    I went to the About page, and wonder if this contains a typo:
    It looks to me that there is probably a missing "not" before "only of languor"...?

    Certainly my decade of illness has transformed me. I was determined not to become bitter early in my life, as I had a grandmother who was. thank you for this. ahmo
     
  3. persuasion

    persuasion visitingmrssmith.com

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    Thanks ahmo,
    Yes, it does look as if a 'not' should be there in Austen's text. When I read it I did a double-take. I think it's just the way she writes. If you read it that Anne has 'moments only of....(the bad stuff)' compared 'to hours of...(the good stuff)!'
    Do comment on the blog if you like so other people can share your views.
    Sending best wishes...
     
  4. SDSue

    SDSue Southeast

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    I love the part about the religious seekers ability to "go back". I've long said that if I could take these lessons and return to the living world, I'd be a different person. Unfortunately, that seems unlikely, and it's difficult to apply lessons when there is little interaction with that world.

    This is why I am thankful for this forum. I am understood, accepted, and believed by those who suffer with me. That is not available in my daily life.
     
  5. persuasion

    persuasion visitingmrssmith.com

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    I posted some thoughts on the above on a new blog I started speaking up for the seriously chronically ill - visitingmrssmith.com
    Thought it might help someone. Do visit and tell us what you think.
     
  6. persuasion

    persuasion visitingmrssmith.com

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    Thought people might be interested to read this post on a new blog visitingmrssmith.com speaking up for the seriously chronically ill. Do come and visit.
     
  7. Misfit Toy

    Misfit Toy Senior Member

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    http://visitingmrssmith.com/

    There is the link. I have never understood why people think their illness is a blessing. I do somewhat understand how you can't appreciate life unless you have suffered, but I think there should be a timeline of that thought, or reality. No one should suffer for more than five years and for some, that is too long.

    I don't even think it's just the well that judge us or think less of us; but the sick, too. I have seen posts on here by people that feel how blessed they are to have this journey. Or, how it's enriched their lives. I guess it all really depends on each one's depth of illness. If they lived with chronic pain that brings about insomnia, I seriously doubt that they would have that thought. And some with CFS or other illnesses, they know what they know regarding their treatment and feel that because a treatment worked for them, it should work for everyone and that is just horse manure. Just because someone takes Valcyte, or Valtrex or does the methylation protocol and it's working...does not mean that it will work for everyone. People need to stop judging. And they do judge when they have found something that works...because they can't handle that it doesn't work for someone else. Very black and white thinking. From the well to the sick and the sick to the sick-people judge and discriminate.

    Very well written blog. It's a shame that so many people are so closed to illness. But, it really comes down to them. It's about them, not us. I know this from my own hard time with a friend that had anorexia. I could not handle her disease anymore and I think it's because of my own situation. Why would anyone want to starve themselves to the point of hospitilization? I never could get it and her illness and how deep it ran was too much for me. I felt that she wanted to be sick. She chose it and wore it like a scarlet letter. So much so, that from years of bulimia, she had to have a colostomy bag due to the intestine caving in from lack of nutrients. This was too much for me to handle with my own illness, circumstances, etc and I skipped town. I was emotionally wrought from her illness, but others could handle it. Why? Because of my own inability to handle it due to my own "shit." It was about me, not her.

    I try to tell myself that with others. Others can't handle my situation because of something they are lacking or fear, but regardless....it hurts no less. We all want to be accepted and loved or respected.
     
    Last edited: Jun 10, 2014
  8. vamah

    vamah Senior Member

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    I agree with you about sick people judging other sick people because they are not getting better. I have afriend with similar (but not the same) health issues and I would think that person would be extra understanding of the struggles, self-doubt, depression, etc. that accompany long term illness. Instead I am accused of not wanting to get better because I do not devote ALL my energies towards my own care. Apparently I am supposed to tell my husband and children to suck it up while I devote every drop of energy to myself but I just don't think that is either fair or realistic. If I KNEW that a year of doing so would cure me I would do it in a minute, but although my friend is sure this is the case, that is unlikely to happen with such a complicated illness.

    I also think suffering is overrated. Could never understand women who did natural childbirth and raved about what a beautiful experience it was. I was never so relieved as when that epidural kicked in.
     
  9. Misfit Toy

    Misfit Toy Senior Member

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    @vamah I have this one friend that does not have the same illness. She works full time at a Dentist's as an FDA. She basically does everything a dentist does. Anyway, over the years, she has sent me to several practitioners that she recommends. I mentioned this before, but the first guy was a voodoo type doc. He decided the price of a visit after the visit. It was a feeling what he was owed. ?????????????? At the end I would be told the cost of the appt.

    The second person was over $350. A macrobiologist who dealt with vitamins and oils. That was just for the appt. The vitamins were about $300.

    The 3rd person was a nurse who posed as a gyn because she worked for a GYN. She said I was hyperthyroid and that was why I was so sick. Then, she consulted a GYN who said that was rubbish. Then my freind who recommended her went to her and this nurse told her she was fat, so now she hated her.

    Then, she sent me to a spiritual healer. The spiritual healer told me that I didn't want to be successful financially, so that I was sabotaging myself with thinking that I am ill and that originally I was from South America, before this life.

    Then, she sent me to a psychic, which she paid for who said she was going to help my father to cross over to the other side because my father had continued to hang around me to protect me after his death, but he was really draining my energy. The irony, with her help...my father passed over to the other side in less than a minute.

    I told my friend....STOP SENDING ME TO THESE PEOPLE...YOU ARE CRAZY. OKAY, I DIDN'T SAY SHE WAS CRAZY...BUT I AM GOING TO, REAL SOON.

    Now, my friend thinks I am negative, because I don't want to go to this new person she is seeing who charges $350 a session and he's not even a doctor. He says he has trained with Yasko. Now, she is on LDN. She keeps asking me to try LDN even though I did not do well on it. No matter what I explain, it's never good enough.

    FACT: She swears by everyone, but are they really helping if after she sees them for awhile...whatever they did that worked initially no longer works? And, she stops even liking them for whatever reason? She is always onto the next Charlatan and she thinks I am crazy for not wanting to try these voodoo like doctor's who aren't even doctor's that she ends up not even liking after a bit.

    So, the next time I talk to her, I am going to lay it down how this makes me feel and it better not continue, because I am sick of it. She always says, "I know there is an answer to this." There's an answer to everything, but that doesn't mean we will find it and after 20 some odd years I have done all I could and can to find it.

    And, most importantly...I need to do things when it's best for me. FOR ME. Not anyone else. If I recommend something to someone and they don't try it, I don't even give a shit. It's their life. I am too busy worrying about myself. We all have choices. It's up to everyone to come into it at their time. At this point, anyone who feels differently can go screw themselves. I am tired of people thinking they know everything.

    @vamah Your friend needs to be a friend and not say something like that. What the hell does she know? Maybe, just maybe it's true....but life is not as easy as just picking up and taking care of you. You have a family and with that comes a responsibility.
     
    Last edited: Jun 10, 2014
    Aileen, merylg and Raindrop like this.
  10. vamah

    vamah Senior Member

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    @Misfit Toy This is why I tell almost no one about my health problems. What's the saying about opinions being like holes -- every ass has got one.
     
    Aileen, ggingues, merylg and 2 others like this.
  11. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I recently told someone I was sick and it was a huge mistake. Her best friend had recently died and she is now putting all her concern on me because she thinks I'm going to keel over any minute. It's too depressing to constantly be asked how I feel and too much pressure to fill the shoes of her friend. She crossed the line by joking about something I told her in confidence (unrelated to ME) so I need to cut back seriously.

    @Misfit Toy The few friends I have who know I am sick never talk to me about it unless I bring it up, which I like. I'm treated like I'm normal.

    Being friends shouldn't be as exhausting as what you are having to deal with. I firmly believe if they could spend a week feeling like I do they'd shut the F up pretty quick.
     
    Sing, Aileen, merylg and 1 other person like this.
  12. Misfit Toy

    Misfit Toy Senior Member

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    I agree Minkey. This friend of mine is also not healthy but nowhere near as sick. Anyway, she knows my situation because I go to the dentist she works for and he knows. Anyway....one of the problems is; I get out, wear makeup, work part time so people think I'm well. I can't hide behind the mask all of the time.
     
  13. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Years ago a friend's doc said she could't be sick because she wore lipstick. That is the stupidest thing I ever heard.

    People see a snapshot of us for the hour or three or four they see us. We look fine. They don't see the aftermath.
     
  14. barbc56

    barbc56 Senior Member

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    An interesting book that discusses this issue is

    Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America

    I hate it when people compare illnesses. Someone once told me I should try to get out more as they knew a person who has MS could. My standard reply after hearing similar comments over and over is that she is where she is and I'm where I am with my illness.

    Not sure if that is the exact wording or that even makes sense as I am having a not so good day butt wanted to post about the book which is very refreshing perspective

    FWIW, I read the title of this thread and thought it would be about patients looking ugly. My reply was going to be that I'm drop dead gorgeous. :lol::rolleyes::rofl:

    Barb
     
    Antares in NYC likes this.
  15. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    FONT TOO BIG!! OUCH my brain
     
    rosie26 likes this.
  16. vamah

    vamah Senior Member

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    "Relentless promotion of positive thinking." What a wonderful turn of phrase. I'm going to have get that book. A strangely uplifting book I read recently is "The Fault in our Stars." I was expecting it to be sickeningly ( no pun intended) sentimental since it is about young people with cancer. But the main character is so refreshingly unsentimental and honest about how illness sucks, I couldn't help but love her.
     
  17. persuasion

    persuasion visitingmrssmith.com

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    Anyone else irritated by advice you get when you're ill? Even from other ill people? You might be interested in a post I've just put up on http://visitingmrssmith.com/
    What do you think?
     
    katim and Wildcat like this.
  18. Martial

    Martial Senior Member

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    I think they do that mostly because they are projecting their own wants on to you, this way they can swallow some of the pain when they see someone in a state of physical suffering. It is a judgement that yields a form of protection against seeing you as how you are now, not to say all of you of course, just not meeting you fully in the place of physical suffering. My mom does this the worst, demand I be working and stop letting illness be so impairing, constantly be belittling everything I tell her. Some might think this is mean but I find it quite obvious that it means she is the one most hurt to see my body in this state thus the one denying things so strongly and being so projecting with her opinions..
     
    golden and PennyIA like this.
  19. ahimsa

    ahimsa Senior Member

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    @flaxhigh, thanks for sharing the info about your blog! I read several of your posts and enjoyed reading your thoughts. You have a way with words.

    Here's a clickable link so folks don't have to cut/paste that URL:

    http://visitingmrssmith.com/


    [Edit - It looks like a couple threads were merged. When I first posted there was no clickable link in any of the posts above mine.]
     
    Last edited: Jun 23, 2014
  20. persuasion

    persuasion visitingmrssmith.com

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    Thanks ahimsa, that's very much appreciated.
     

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