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-   -   How do I cope with BIID (https://www.askmehelpdesk.com/showthread.php?t=388300)

  • Aug 18, 2009, 08:20 PM
    teeruss
    How do I cope with BIID
    Since childhood I have had a strong desire to want my left leg amputated. Thanks to the internet, I have discovered others with a similar problem. I have sought help only to find out that the image of my body in my brain does not include a left leg so I have to live with this frustrating disability.

    This condition is known as 'body image integrity disorder" (BIID)

    I am trying to find a way to cope with intense frustration because my left leg does not belong to me, yet I have to tolerate its existence.
  • Aug 18, 2009, 08:27 PM
    N0help4u

    WOW I just read up on it a little and read about what lengths this kid went to to amputate his arm.
    Have you tried getting counselling to cope?
    Maybe hypnosis might help?

    I don't know, its still trying to sink in my brain.
  • Aug 18, 2009, 08:37 PM
    Alty

    I've never heard of this disorder until now.

    I can't imagine going through it.

    Therapy would be a start. Sadly, I don't know what else to suggest.

    Talking about it, knowing what you're dealing with, those are all a great start in finding a way to live with this.
  • Aug 18, 2009, 10:01 PM
    KISS

    I'm with the wows. I'll bite with an off the wall popped into mind suggestion: Have a hypnotist do some age regression stuff, so it can easily be done. Age regress and live like an "adult baby" and then go though the entire process of learning how to walk. Yep, injections should be given that are given just before anesthesia which make it down right difficult to walk.

    It's off the wall rambling. Take it or leave it.
  • Aug 19, 2009, 09:57 AM
    teeruss
    I have consulted the few experts that exist on this subject. Some sufferers have found relief by having their limb amputated.
    Others have done it themselves. They say they are fully relieved and quite happy after a long life of frustration.
    I am not ready to do such a radical thing but opt. to live through it.
    For those who have questions, Google BIID. It is a pretty accurate description.
    By he way, this ailment has been featured on CSI NY and two other TV shows.
    Teeruss
  • Aug 19, 2009, 10:14 AM
    N0help4u

    I'm wondering like couldn't you just look at it as an old friend that is always there for you no matter how annoying it is to you?
    Like I mean your leg is there for you to help you walk. Getting rid of it doesn't sound like the better option of what you'll have to do without it.
  • Aug 19, 2009, 02:13 PM
    teeruss

    Thank you for that suggestion. I do appreciate the fact that I have mobility but would prefer using crutches. When I dream, I am an amputee on crutches and am very comfortable with it.
    I will put into practice your suggestion and use my foreign leg as a tool for walking much like a prosthesis.
  • Aug 19, 2009, 02:18 PM
    N0help4u

    In that case I think Keepitsimple was on to something. Before you go to such extremes, get some crutches and practice with them without using your leg first (and do the regression thing if you can). Don't do anything drastic until you have adjusted with the crutches and are 100% positive you still need to do this.
  • Aug 20, 2009, 11:06 PM
    Gemini54
    I have heard of the disorder and watched, some years ago, a British program that followed the lives of a number of sufferers.

    It's so difficult to give advice on something like this! This may sound completely loopy (and I apologize for this), but would you be open to something like past life regression therapy? It may enable you to understand why you don't want the leg and if there was a reason, in a past life, for your feelings towards it.

    What many of these therapists do is alter the past life event /experience and then bring you back to the present with the change. In your case, it might be with an understanding of why you don't want the leg and an acceptance that you have to live with it.
  • Aug 21, 2009, 05:38 AM
    teeruss

    Gemini:
    I have sought help from professionals and this is what they found. There is a part of the brain that gets active when we are touched. It is an accumulation of all our parts in one neuro-image.
    My brain was imaged and responded normally when I was touched except on the left leg from mid thigh down.
    When the left leg is touched, there is no brain response. So my mental body image is missing a leg.
    I have tolerated this since childhood and don't expect it to change. It is troublesome and I have a hard time coping. Amputation is not an option but I sometimes wish for it.
  • Aug 21, 2009, 05:41 AM
    teeruss
    One more thing.
    I had a friend who was an amputee and our acquaintance helped a lot. He was willing to talk about it and tell me how it felt. Unfortunately, he died 3 months ago and I am alone.
  • Aug 21, 2009, 07:30 AM
    asking

    You have sensation below mid thigh? I assume you don't mean your leg is numb to all feeling from mid thigh down... Could you explain a bit more?

    It sounds like a difficult problem to have. Do you engage in much physical exercise?
  • Aug 21, 2009, 10:56 AM
    teeruss
    Asking:
    The leg is sensitive all the way to the toes.
    My brain doesn't recognize it past mid thigh.
    When I look at it, it is as though I am observing some one else's limb.
    When I dream, I am one-legged and not affected by it. It seems normal.

    This phenomenon is being studied by Dr. First of Columbia U. and
    Ramachandran of U. California in San Diego. I think First has a web
    Site that gives some information. Google BIID for a summary.
  • Aug 21, 2009, 10:57 AM
    teeruss

    Yes, I am physically active and use a gym daily.
  • Aug 21, 2009, 12:26 PM
    asking

    So if someone touches or presses on your foot, say, you feel that. But if you touch your own foot, if feels like you are touching someone else's?

    I have read a little about this before. But not talked to someone who has it. It seems very interesting and cool even though I fully get that it is frustrating to live with day to day.

    If you like to write, you might consider writing about your experiences. You could start a blog, and in that way attract other people who are interested or have special insights. Or write a book that is partly scientific and partly about your own experiences.

    I was thinking running might somehow change your wiring so the leg didn't seem quite so alien.
  • Aug 21, 2009, 08:22 PM
    teeruss
    I get a massage about once a month and get the masseur to focus on my left leg in an effort to validate it. It helps.

    I think I mentioned already that an amputee friend of mine would allow me to visit with him and specifically talk about being one legged. That helped a lot but he is now dead.

    There is already of group to which I belong. Some have successfully amputated their own limbs, mostly legs. Doing that presents problems with family and friends not to mention insurance. A few nurses have joined our group in an effort to understand it.
    They tell of patients who have had amputations and come out of it without any need for emotional rehab. They suspect those patients were BIID sufferers.

    I will go to the grave with both legs.
  • Aug 21, 2009, 08:57 PM
    asking

    That's interesting that massage helps.

    What did your amputee friend talk to you about? How did it help?
  • Aug 22, 2009, 07:09 AM
    teeruss
    First, he would wear shorts so I could see his stump. (later, the other leg had to be amputated and this made the visits doubly helpful)

    He was free to answer questions about how his stump felt and the phantom limb. We actually did some experiments together to test the mental control over his phantom.

    He would move the muscles in his stump and describe what that represented with a whole leg. All this allowed me to vicariously experience the amputee condition.

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