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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Im sad

Discussion in 'Lifestyle Management' started by shrewsbury, May 14, 2010.

  1. Dreambirdie

    Dreambirdie work in progress

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    I rarely "go quietly," Gregory. :Retro wink: I have a deeply ingrained habit of resistance to everything painful--especially my symptoms. But the very frustrating and predictable thing about that is that the more I resist things, the worse they get, and the worse they get, the more upset I get at them being worse and by the time I'm done reacting to myself, I've managed to multiply my unhappiness exponentially. That's my mind at it's worst.

    Sometimes I really do need to rant and scream about how fucked up it is to be sick, and to paint really nasty paintings of my disease, and to howl out my pain in the bathtub non-sensically. I can be a BIG relief...and I am much better at allowing myself that. But now I know that I also can choose not to do that. And there is freedom in knowing that.

    Remembering that THE REACTION IS OPTIONAL has helped me a lot.
     
  2. Greggory Blundell

    Greggory Blundell *****

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    Choice. Yep, a lot to be said for that. It brings control back into focus I suppose, and control is more and more elusive these days. But "the reaction is optional" hits true and is in great respect comforting. :)
     
  3. akrasia

    akrasia Senior Member

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    Not to be a Dharma bore, but I would like to echo Koan's advice for self love, the hardest task of all. I forget where, naturally, but somewhere the Buddha says to someone in pain, you can search all the world over and never find anyone more worthy of your love than yourself. This is very powerful, and while it sounds Oprahesque, at first, it contains a piercing message that is completely opposed to self absorption. If practice is an ongoing process of compassionate inclusion, how can we leave ourselves out? But the fact that we have so much difficulty recognizing ourselves, that we can't contemplate ourselves without irony, is a product of an oblivious, self absorbed culture that very often screens out suffering, both subtle and gross.

    I had some years of practice before I got sick and thought I was just a swell Bodhisattva. But until I was able to extend patience and warmth and kindness towards myself, I didn't realize how anemic my kindness to others often was.

    Does it help the sadness? Sometimes. Sometimes, I'm able to invite the demons to tea and everyone's very civilized, sometimes they run amok. And when they do I try to move the party from the kitchen to the ballroom.

    The months since the Science article have been some of the most grueling I've experienced with this illness; I thank everyone, including the lurkers, for the extremely sustaining ongoing conversations found uniquely here.
     
  4. Greggory Blundell

    Greggory Blundell *****

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    Akrasia: First, a Dharma bore is oxymoronic. I have a love fascination with most things East, and certainly its philosophies. But as a mere hangover from the 60's, and an offspring from Jersey, I keep dear to me a sacred sense of screw that which is trying to screw me. I know, not very altruistic, and I am lessor for that.
     
  5. Koan

    Koan Be the change.

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    Me too!

    Screw that!

    :hug:
     
  6. shrewsbury

    shrewsbury member

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    please excuse my bad play on words.

    Greggory, if you are the lessor, ie someone who grants a lease, is it possible to cancel, or not renew, that lease when it's time is up?:Retro wink:
     
  7. Koan

    Koan Be the change.

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    Me too! Thank you for articulating that. Me too!

    Me too!

    Me too!

    If I am to be doing this, let me do it here with all of you!

    with metta

    Koan
     
  8. Greggory Blundell

    Greggory Blundell *****

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    Shrewsbury, my bad. Geez. Just when you think you can't get any worse...:) But I love laughing at myself.
     
  9. Dreambirdie

    Dreambirdie work in progress

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    The demons have been very informative. And they are so good at dancing!
     
  10. shrewsbury

    shrewsbury member

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    no no, I'm the "bad" one :Retro redface::ashamed:, but I couldn't resist pointing out another possible interpretation of your words, especially after your previous post had expressed appreciation of the control in "reaction is an option"

    so glad it got you laughing!:D:Retro tongue::rolleyes::Retro wink:
     
  11. akrasia

    akrasia Senior Member

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    Gregory,

    I think it's a mistake to see practices like this as precluding well focused, articulate anger. It does insist on not turning in and becoming bitter. No matter the loss. Having compassion for the Wesselys, and our other friends, does not mean you can't be critical. In fact, I think it demands grounded critical thinking. Including them, or anyone acting oppressively, in the circle of your concern does not mean you have to like them. Defiance is fine. Natural. As is sadness. You value your life and your gifts and have seen them taken by an illness whose necessity you deeply question.
     
  12. Greggory Blundell

    Greggory Blundell *****

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    akrasia, you are 100% right. I read what you have written and I couldn't agree more. Still, part of me relishes wallowing in the shallows. There is a visceral "right" to lashing out at all the crap that has encroached on our lives, you know? Hey, I think there's a koan in here somewhere. ..
     
  13. Dreambirdie

    Dreambirdie work in progress

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    I find comfort in conscious wallowing at times... wallowing in the shallows actually sounds like a new meditation practice. You might be on to something, Greggory.

    And lashing out can be very cathartic, especially through art. Painting from the place of being okay with whatever is has been a very useful practice for me. I have cath-arted many feelings that way. I highly recommend it.
     
  14. akrasia

    akrasia Senior Member

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    Dreambirdie, Gregory,

    Oh, now and again, life finds me at ShallowWallowHollow, as well.
     
  15. Dreambirdie

    Dreambirdie work in progress

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    Great! I will see you there. :cool::Retro smile::Retro smile:
     
  16. Koan

    Koan Be the change.

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    me too!

    :hug:
     
  17. rebecca1995

    rebecca1995 Apple, anyone?

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    I'm a big fan of wallowing, myself. Works for me. If it ain't broke-- :Retro wink:
     
  18. Stone

    Stone Senior Member

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    Today I sure wish I could find my peaceful place of acceptance about which I wrote last night. This is one of those days when peace of any sort eludes me. But I do know that I will find it again. That's one thing about this disease I can always count on; no matter how bad I feel, it will eventually change to better or worse and no matter how good I feel, that will also eventually change to better or worse, but I digress. This whole thing, dealing with this loss of self, life, love, health, credibility and legitimacy as a human being and all that, all boils down to grief. There are 4 general stages in grief in which a person can be at any given time for any length of time which are, in no particular order: anger, denial, sadness, acceptance. All of them are normal responses to any deep loss. I'm rolling around today somewhere between sadness and anger. I'm so tired of hurting and I'm TERRIFIED because I'm forced to return to my PCP and tell her my pain is not under control, which will without a doubt be ill-received and she's going to (excuse me but) piss all over me. I know it's coming. I also know there's nothing I can do about it. I still don't understand why it is that you can tell your doctor that the blood pressure meds, cholesterol meds, antidepressants or antibiotics aren't working, but if you say the pain meds aren't working, the doctor goes into some other mode. How exactly does a doctor differentiate between "drug seeking" and "relief seeking"? And how exactly does one ask for pain relief without asking for it? Isn't adequate pain relief among the "patient's bill of rights" they hand you on your first visit? Frankly I hate pain meds. I do not enjoy how they make me feel, I don't get how people can become addicted to them, and would much rather just not need them at all, thank you. This doctor says that CFS does not cause pain (WHAT?), that FM doesn't hurt that bad (like there's some universal pain limit in FM), and yet refuses to evaluate me for other possible causes, which makes absolutely no sense and clearly indicates that she doesn't believe me. I need a new doctor, but that process is more emotionally challenging than the pain. So gathering what strength I could today, I made some calls looking for another doctor since there's no law that says I can't just keep looking till I find a doctor who gives a sh*t or die trying. I called one doc who was recommended by a good friend with chronic pain, but he is not accepting new patients. I called another who was listed on a CFS "good doctor" list, only to find that he does not take Medicare, which really makes me mad since many of the sickest of us are on Medicare (if we're lucky enough to get it). So how much understanding could he really have if he supposedly understands CFS but doesn't accept Medicare? It's an oxymoron to me. Then I called another doctor who was recommended by a friend whose mother has CFS and claims she is well treated. I was told that in order to JUST make an appt as a new patient, I had to come to the office first and pick up a new patient packet. The lady said, "Otherwise I don't have anything to put into the computer", as if I were not right there on the phone with her. I mean, how much information does she need to give me an appointment? I asked her if she could please mail said packet to me as I am totally disabled and getting there is a major challenge. She said that I should just send someone else by to pick it up (I kid you not, and this is just a regular, run of the mill family practice). I said, "well that's the thing, my husband works 3rd shift and doesn't wake up until after your office is closed, so could you just please mail it to me?" to which she responded, "Ummm, most people just come by and pick it up". I don't know if I even want to walk into the door of a doctor's office that treats people like this as general policy. So I'm back at square one AGAIN, faced with returning to my idiot PCP and being chastised for failing to suffer from my disease within the proper parameters. She is willing to refer me to a pain clinic, but get this, not one pain clinic in this city will take a patient who has a diagnosis of fibromyalgia, regardless of what other condition they may have, even if it's not for treatment of fibromyalgia. Insane, right? I have written to several infectious disease docs requesting consultation, since my PCP will not refer me, and have not received a single reply. My options are getting more and more narrow and I'm feeling really compressed, so yes, I'm not finding my place of acceptance today. Maybe it will be there tomorrow. I think I'll make a list of the things for which I'm grateful, since doing that seems to help on crazy days like this. So do you think insanity like this with the medical community will get better or worse with Obama care? I truly don't know, and I'm just asking for opinions. I have no political agenda. I'm too tired for things like political agendas, and I'm not even sure I spelled it correctly. Thoughts?
     
  19. Greggory Blundell

    Greggory Blundell *****

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    Well, first of all, don't worry about spelling. Stone, I am deeply sorry for this day you've had to endure. The system is broken, and sometimes I believe it snapped upon our shoulders. I cannot say if things will improve with changes enacted under O'Bama, but I hope so. The mistreatment of people like we, however, will likely continue for some time. And that sucks. It is what it is, up to a certain point. So I fear it will continue, but I think eventually it will abate thanks to the Internet and our collective voice. Despite the chorus of cynics that assail my thoughts and visit nightly my dreams, I believe right will prevail. But only because we choose to make it happen. We, our community, must be the catalyst. We must make the difference.
     
  20. Dreambirdie

    Dreambirdie work in progress

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    Oh Stone, I'm so sorry... Sometimes things just really suck. Hang in there, and know you're not alone.
    :hug::hug::hug:
     

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