A new way for surviving this DD

Discussion in 'Fibromyalgia Main Forum' started by teller7, May 23, 2009.

  1. teller7

    teller7 New Member

    I'm starting a new tactic. I'm going to stop going from dr to dr searching for help and a cure because I know there is none out there. Also I'm going to really try and be happy no matter how bad I feel and go with the flow on days when it's not so good. I'm doing breathing exercises and I think it's helping in that department pretty well. I keep thinking to myself that I have to accept the things I can't change. When I say that I can feel a little peace fill my body. I know it's hard to do this because I have been fighting it for over 7 years now. I know there will be days when I slip and go back to being mad about the whole thing, but I'm going to try really hard to get back to the good thoughts I just mentioned. I was going to try the Gupta programme and decided not to waste my time or money. It's NOT a cure and my theory from now on is - if it's not a cure I'm not interested and I'll be happy with a few good days once in awhile.
  2. DavidJ.

    DavidJ. New Member

    hi carol,

    well you might be right as to the doctors. here in germany almost no one knows the disease, but i thought that would be different in america. i mean , is it true that 3 million people are affected by cfs in america? i really cant believe that, thats a lot! so there gotta be doctors who can help.

    oh there are so many doctors stickied on this board, havent you been to one of them ? because the people here recommend them , so they might know how to help you...


  3. Rafiki

    Rafiki New Member

    I have had ME since 1979. I did enjoy a long period of relative good health which at the time felt like lousy health but was good enough to allow me to work and have a life. But, the past decade has been dominated by illness which has not allowed me to work or socialize in any real way.

    I now manage my illness just as you suggest. I pace in a way that works. I meditate and diminish the degree to which I suffer with mindfulness. I, too, do not look for a cure which we know does not yet exist. I do maximize my appreciation for every single day where I am able to enjoy my laptop, a book or a movie on television. I have joined Facebook where I can interact with my family and a few old friends in a way which is almost indistinguishable from healthy - Facebook is the great leveler.

    The only drugs I am willing to put in my body are doxycycline, because it has traditionally worked for me and has been used by many for a long time so is a fairly well understood drug; benedryl, because antihistamines seems to help me and this is also useful for a good night's sleep but one does risk restless legs; estrace (a plant derived estrogen), because my ovaries were removed in my early 30s due to endometriosis of the bowel - statistically linked to ME - and, finally, Xanax for sleep. That's it.

    I won't take antivirals although I have had extraordinary high titers to EBV and active HHV6 as confirmed by testing. A friend of mine is an infectious disease doc who explained to me that human herpes viruses reactivate with any stressor - the example he used was that they will reactivate if you break your leg.

    I avoid sunlight because it makes me feel ill and is known to encourage replication and reactivation of herpes viruses. Even inside my apt. I guard against too much sun getting in through the windows by keeping my louver blinds tilted up and I wear sun protective clothing outside. My experience has taught me that this is necessary because I feel ill very quickly when exposed to direct sunlight.

    I pace, finally, after decades of pushing and crashing. I live a quiet life in my tiny apt. with my little dog. When I am doing well, I can take him a block to the off leash dog beach where I sit on a big rock or walk slowly along the shore, but weeks, sometimes months, go by where that is not possible. Occasionally, I will have a week when we make it down more than once - Yippie!!! I sometimes miscalculate that second trip and am, once again, housebound for weeks. I am learning balance and caution because I have to not because it is my nature.

    I have not, at all, resigned myself to this being my life although I will be 57 this summer but I am very cautious about doing any more harm to my body. I am grateful to the people willing to take more risks with treatment but I fear for them. Perhaps because I am no longer really young :eek:) or because I have been sick for such a long time, don't know, but I am acutely cognizant of the danger of doing irreparable harm and ending up in worse shape than I am already in. I can just barely cope with this as it is so my efforts, until someone can prove to me that there is something truly effective, are to learn to cope better with what is and guard what health and ability I have. And, through my Buddhist practice, to suffer as little as possible.

    As my own advocate, my guiding principle is: first, do no harm.

    Thanks for posting Carol. I think we are taking a reasonable course of action.

    peace to you and better health to all,

    ETA readability

    [This Message was Edited on 05/24/2009]
  4. pam_d

    pam_d New Member

    I don't post much anymore, but your message caught my eye because even if you struggle with this DD every day, you have developed an extremely healthy attitude about it. I agree that many of us have probably spent countless dollars and energy searching for that elusive "cure"----and in many cases, it wasn't completely wasted, as we may have learned a lot along the way. But being able to accept that, hey, I may have pain, I may have fatigue, I may have my limitations, but I'm still a valuable, vital person, and I'm going to commit to enjoying every bit that I can out of life---well, that's a truly wonderful thing. Enjoy each day that you can, find something beautiful about it. On the days that you really struggle, know that you'll have better days mixed in there, too. I think you've consciously chosen a path that's bound to bring better quality of life just because mentally, you are making choices to enhance your life quality. Kudos to you, Carol!

    Take care,
    Pam----FM sufferer from way back (better now)
    2X Leukemia (& bone marrow transplant) survivor, who tries to find good in each
    day I'm here, too!
  5. Jayna

    Jayna New Member

    I too have learned (and will learn again) to take care of myself first, instead of looking for a doctor who can fix me. Rest and pacing and good nutrition and good sleep, along with whatever tools or gadgets can help me achieve those things, are where my focus is now.

    Sick since 1992, I have spent manyy years in doctor-visits before giving up for a few years and just coping on my own. More recently, I saw a CFS specialist once a month for over 2 years, at some cost and inconvenience, and only got marginally better... almost entirely from things I suggested to her myself.

    Now I see her only twice or three times a year (because I need to have a specialist on my team to sign disability forms etc) and get her best suggestions and go away and have time to read up on them and try them out and see if they work for me.

    I'm no longer wasting precious energy and $$ chasing 'cures' so I have more energy and $$ to enjoy each day to the best of my ability.

    Being at peace with myself is my best healing tool.
  6. LindaJones

    LindaJones New Member

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