Dr. Bateman answers IOM questions from the community: Part 1
Clark Ellis brings us Part 1 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community ...
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Self recognition - one of those strange things

Discussion in 'General ME/CFS Discussion' started by Freddd, Aug 11, 2014.

  1. Freddd

    Freddd Senior Member

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    Two nights ago I woke up in the middle of the night to go to the bathroom; nothing strange about that. But two nights ago was a full moon and it was coming in brightly and I could see myself getting out of bed in the full length mirror. I couldn't see details, just body size and shape mostly. I didn't recognize myself. Seeing myself from a distance full length, like the reflection in a door, I still don't get that hit "it's me". At night when I change position and my hand is resting on my chest or stomach for the past few years I get a hit of "Who's body is this I'm feeling?" Especially if I was dreaming of other times. I know the struggle to keep weight off after usually a struggle to get it off. My struggle wasn't with weight directly, it was with finding the right nutrition that changed my metabolism.

    I wonder if others have things like that. Over the last 4-5 years I've lost about 75 pounds of water and fat after a loss of a previous 45 pounds a few years earlier, and put on 50 pounds of muscle. As a result I look and feel quite different, to me and everybody else. My body feels radically different to my hands. I wonder how much "this isn't me" plays in this whole business of changing our bodies and have them stay changed.

    I have lost my foundations. I don't "know" what pain free feels like any more. I haven't felt that in more than 50 years. I don't know what feels normal. I don't know what feels "right" in an overall basis. Intellectually I can recognize myself at a distance in a mirror but it doesn't have the "that's me" response to it. I wake up to a changing profile of pain every morning, and when some part of it is worsening that I notice, it's a real downer, day after day.
     
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  2. drob31

    drob31 Senior Member

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    Very introspective, Freddd. Do you think this will sort of be like a lingering symptom, much like depersonalization? Perhaps not being able to feel normal or even "feel" for so long has become the new normal.
     
  3. justy

    justy Senior Member

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    Yes I understand this feeling of not knowing myself anymore. My body carries more fat now, but its not just a matter of not recognisisng my physical self, but I no longer know what the 'real' 'unsick' me is.

    I cant remember how to feel well or OK or to understand how to be the me I used to be.
     
  4. rosie26

    rosie26 Senior Member

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    My personality has changed @Freddd. I have had to be more forthright out of necessity. I like the person I am now, in that respect. But I have a problem in reacting too quickly to things and need to slow down my reactions. I know this is my head inflammation and neural sensitivities that do this to me though.
     
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  5. Freddd

    Freddd Senior Member

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    Hi Drob,

    I look at this as a side effect of massive healing and recovery. My body has literally remade itself. I still have things wrong and those things are more obvious than when I had 175 other symptoms competing with what is left. My experience and having studied physiological psychology leads me to believe that this is an artifact of things changing faster than the mind accepts them as "steady and normal". I wonder if it isn't a factor in finding healing unpleasant in many cases.
     
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  6. whodathunkit

    whodathunkit Senior Member

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    @Freddd: your body has remade itself *twice*, didn't it? Once on the way down, and now on the way back up. That's a lot for the mind to accept in a relatively short lifespan like ours.
     
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  7. Johnmac

    Johnmac Senior Member

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    Most sick people don't want to get well, because the illness so quickly becomes a part of their identity.

    A few, like you, break out of that, and pay the price of a 'new me'.

    In the hunter-gatherer tribes which have survived, the 'shaman's journey' involves getting very, very sick for quite a while. When you are healed, you have become someone capable of healing others. You have also become a new person with a different personality.

    I'm guessing this may be our evolutionary model.
     
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  8. Adster

    Adster Senior Member

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    I'm interested in what lead you to this conclusion - I haven't seen any evidence of this personally. I would have thought there would be very few sick people who didn't want to get well. I might be wrong though!
     
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  9. Johnmac

    Johnmac Senior Member

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    Only subjective experience, Adster. I'd define "wants to get well" as "prepared to do something about it (other than see a doctor, which doesn't count)".

    Hardly anyone I've known fits into that definition. Those who do usually get well or at least weller.
     
  10. Adster

    Adster Senior Member

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    Fair enough :) I guess I'd argue that there would be plenty of people, especially of certain generations in certain societies that would desperately want to get well and are prepared to do anything about it, but lack the confidence or knowledge to do anything other than put their trust and faith in a doctor.

    Sadly, the doctoring business isn't always patient positive outcome focused, as you point out!
     
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  11. whodathunkit

    whodathunkit Senior Member

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    Some people do seem to be heavily invested in their illnesses. I've got people in my family who will use their illness to beat others over the head, or as an excuse for unacceptable behavior that they were manifesting long before they became sick. IIt goes something like this:

    "I'm acting this way because I'm sick!"
    "No, you're not, you acted like this 20 years ago, too, and you weren't sick then. It's still unacceptable behavior."
    "You can't talk to me like that! I can't take it because I'm sick!"
    :rolleyes:

    That said, IMO most sick people who refuse to help themselves and insist that others mold themselves around their illness probably just haven't encountered the right stimulus to motivate them to help themselves a little more. I've found that making ideas readily available and then applauding when they broach the ideas six months later as if it were their own is a good strategy to begin provoking change. Small steps.
     
  12. alex3619

    alex3619 Senior Member

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    Flip side: I am so used to seeing my Einstein avatar that I am starting to automatically consider its really me.

    In my experience nearly all patients with ME will try anything after a few years. Then we learn that we should only try things that have good evidence, as most things fail. There is no guaranteed cure, some get well, some improve, we can influence that, we can take our chances with unproven methods, but there are no guarantees.
     
  13. ahmo

    ahmo Senior Member

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    @alex3619
    [​IMG]:balloons:
     
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  14. Freddd

    Freddd Senior Member

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    Hi drob,

    I have had other large changes and never had this experience. This didn't happen when I went up to 325 from 225 after my back was broken. Then over the next 3 years I dropped to 170. My ribs were clearly felt then but I never noticed them. I had sleep disorders even then. This has happened only as a side effect of the protocol with the AdoCbl, MeCbl, L-methylfolate and L-carnitine fumarate. The rate of healing is often larger and especially the nature of sleep is changed. I had multiple sleep disorders for much of my life. My sleep normalized in various ways with each of the 4 Deadlock quartet component. I think it is that different state of consciousness on waking up, very much more asleep typically, a far better quality of sleep.

    Under normal conditions I would say that "I" is not the body. I must admit however, that I do expect to see "my body" on wakeup even though the body is not "I".

    I certainly wouldn't call it "depersonalization" though I've never experienced that. When it is triggered by feel, I'm typically feeling my ribs. For 45 of the last 50 years at least, I haven't been able to feel my ribs. It is a surprise, and about 2 years so far this time. But that is a drop in the bucket of the duration for which it was impossible for me to feel my ribs. In freshwater I used to be unable to sink, ever since perhaps age 12 and could float with my head looking forward and mouth out of the water. About 5 years ago I started being able to sink by exhaling. Now I have to keep my lungs pretty full not to sink while motionless.

    Lack of normal seems likely due to constant change of the sensory and interpretive system itself, the brain and mind. Much of it appears to be going through a round of healing since re-starting the 3x10mg MeCbl injections daily after the failed long term sublingual trial in which I had a CNS crash. It doesn't stay still long enough to become "normal", like a background odor or sound or color or water taste.


    Perhaps not being able to feel normal or even "feel" for so long has become the new normal

    Pain exacts a price. It is wearing on a person. My limits for walking is not energy or distance, it is pain of feet, or on a bad day, knees or hips or back or you name it, everything that banged up in the car wreck or just being young and indestructible. These pains don't hold constant. The pain is "managed" but that doesn't mean pain free or any where near. However, I don't have FMS, CFS or congestive heart failure anymore, not on the verge of dropping dead, not in a wheelchair where I was headed 6 years ago. I feel lots except for the muscles on the bottom of parts of my feet and parts are numb and parts are very sore.


    Flavors have been improving for a month now. They had faded a lot during the failed trial, but slowly and not noticeable while it was happening.

    It's not a terrible thing, not recognizing the body maybe because of the lingering dream set in the past or whatever. It doesn't bother me. It just seems one of the more unusual side effects.
     
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  15. taniaaust1

    taniaaust1

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    OMG, Im always shocked when I hear someone say what you just did. Most here are trying EVERYTHING to recover and willing to go to great lengths to do so.

    This illness wrecks ones life far more then most other illnesses do, puts us into poverty cause we spend so much money trialing things and taking supplements or other meds etc. To say most with this illness are choosing to stay unwell and do not want to get well, I find quite an incredible thing for someone to say.

    Most of us have tried to force ourselves to be more active (and made ourselves worst by that) and then tried to force ourselves to do things like agressive rest therapy (which is soo very hard to make oneself rest up lots). Many of us are willing to take quite dangerous drugs if that is the answer to recovering. I wont ask you what we should be doing which we arent as if whatever is in your mind was the answer for us, most of us would of stumbled onto it already or heard about it.
     
    Last edited: Aug 12, 2014
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  16. Freddd

    Freddd Senior Member

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    Hi Johnmac .

    Here is the best book on the subject of Tantric Alchemy I know of. Yes, it is definitely an evolutionary model.

    http://www.jrhaule.net/ipet.html

    The first few chapters in vol. 1 are about the shaman's journey and assembly of the soul.
     
    Johnmac likes this.
  17. Johnmac

    Johnmac Senior Member

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    You've misunderstood what I said.

    That the people here and on other CFS forums represent 1% or less of those with CFS proves my point.

    For some reason you thought I was talking about you and the people here. You (we) are obviously the exception.

     
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  18. Johnmac

    Johnmac Senior Member

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    Thanks Freddd, the synopsis is interesting enough - I bet the book is too.

    You seem to be into everything.
     
  19. whodathunkit

    whodathunkit Senior Member

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    Not everyone who is sick has CFS'/ME. And for my part, I was talking about some of the emotional (rather than physical) aspectis of chronic illness or disability, and the "pass" on behavior some people feel "entitled" to because they claim the status of being chronically ill/disabled. As someone with an extreme physical disability (I'm profoundly deaf) who works in education, I've witnessed this phenomenon a ton of times. Sadly, when I was first diagnosed as deaf I perpetrated it myself, until I realized what I was doing. I sometimes used my disabilty to get people and circumstances around me to bend in ways they were not accustomed to. Back in the day it was still acceptable to call people on it, and a couple people called me out. That's another reason I know the phenomenon is real.

    Now-days claiming disability is almost sacred. If you dare say anything about a sick or disablied person's behavior (again, not talking about making the necessary and appropriate physical accomodations) you're a big meanie, you lack empathy, and become villified.

    It is undeniable that some people feel entitled to perpetuate a lack of emotional self-reliance that is considered unacceptable in healthy adults, because they are considered or consider themselves ill or disabled. While allowances can and should be made for physical infirmities, unless there is extreme mental illness, being sick doesn't turn the sick person into a child, and doesn't entitled them to beat people up psychologically in a way that is considered unacceptable among adults.
     
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  20. Freddd

    Freddd Senior Member

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    Hi Whodathunkit,

    My wife during those decades would when discussing what were going to do and it wasn't what I wanted, she offered up "oh the (pain, fatigue, etc) is too much to do it?" I made it a definite "no, the idea just doesn't appeal to me". I was trying to fight off this multi-tentacled disease that was trying to take over my life. I wasn't going to hand over any part of my life to this thing, I was fighting it all the way. I have watched the way symptoms become the easy excuse and spreads in people's lives. When my mother was going through her years of what now looks like genuine b12 deficiency anorexia, depression and psychosis, ever since it was cured quickly with CyanoCbl and folic acid (I'm adopted, no genetic linkage) when the rule became "don't do anything to upset your mother", her upset vastly multiplied as she used it to try to control every aspect of everybody's life. I saw how it "spread". I saw the similar thing in other people. On the other hand when my father was housebound and quarantined in the house for 2 years with serum hepatitis he very noticeably didn't do it. I have met folks here with such neuropsyc damage that they literally could not be "reasonable". They don't post much as a rule in my experience. Severe Deadlock Quartet deficiency dementias can be very intense. There can also be hallucinations without delusions or any stories at all about them and just allow them to be "noise".

    Many people that are farthest gone into these things lose insight and have no idea how they are being affected or affecting others.
     
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