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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Tipping over, bad balance

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Carrigon, Jul 11, 2010.

  1. Sing

    Sing Senior Member

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    New England
    Alex reminds me of the other big part of light-headedness, loss of balance, etc.--it is the mental confusion that goes with it!

    Poor judgment, can't think, etc. I don't like going on a walk with another person because they expect to carry on a conversation at the same time. I can talk but not think--my responses are just pulled out of the bag of conventional responses. I often can't take in what the other person is saying. The other person probably thinks I am fine, just uninteresting.

    I feel sorry afterwards because I missed the boat. So I do take some walks but do it alone and stop whenever I need to. A lot of my life is solitary because that is the best situation at this point in which to take care of myself.

    Sing
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  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi sing,

    You just reminded me of something I have been doing for way over a decade now - having prescripted conversations with other people. I have a lot of time to think - everyone can think back and say "hey, I should have said this or that". When my brain is half working I can go back and rethink my replies. I have oodles of them and they become defacto conversation scripts. When my brain fog is severe, I run the scripts. Most people can't tell the difference. Every now and then though I say something really silly, because my brain doesn't pick up on the way the conversation is going and I am still running with the script. Once I even ran a script on how an election was going - but the election was long over. This got some strange looks. A few of my close friends can spot this happening even when I don't get it wrong, but others just thing I am weird and don't realize the issue.

    The psychobabble people like to claim we are exagerating or faking our illness. In reality I think we are trying hard to fake normality and failing.

    Bye
    Alex
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  3. Sing

    Sing Senior Member

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    Thanks, Alex, for what you just added. I think about a lot of stuff when I'm sitting or lying down quietly on my own, then, like you, often run scripts when I'm with other people. Because even if I am not walking with them, in my example above, I may be sitting up straight, which is hard to do, or trying to eat, which is also a challenge to appear normal doing. I can't multi-task like this and do it all normally and well. Driving is another situation like this--Then I do tell people either I can converse in the passenger seat, or I can drive in silence, but I cannot drive and converse at the same time.

    As you said, "The psychobabble people like to claim we are exagerating or faking our illness. In reality I think we are trying hard to fake normality and failing. "

    Sing
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  4. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi Sing

    I think the multitasking thing is at the the heart of it. I need to focus much more of my brain on what I am doing, there is nothing left for any other mental activity. This even applies to making a cup of coffee, or a sandwich. I find eating finger food is not a problem, but if I have to concentrate, even eating can be a problem. When I was at uni I couldn't change topics. On any topic I was articulate, but change topics and it took me several minutes for my brain to change to the new topic and for me to become articulate again.

    Bye
    Alex
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  5. Sean

    Sean Senior Member

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    When I first got sick I tended to 'fall' backwards in particular when I was standing still. Learned to compensate, but it was and still is an odd sensation.

    I find it helpful to stand with my feet a bit further apart than usual, and with one foot slightly further forward than the other, just 3-4 inches is plenty.

    Having a solid object to hold or lean on is very useful. A wall, a pole or rail, etc.

    But best thing is either sit down or keep moving. Standing still is pretty trying for me.
  6. Sing

    Sing Senior Member

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    Sean, yeah, I hang onto things, sit down even in odd places, at odd times. I understand why old people toddle down the middle of the grocery aisles--trying to keep their balance. It's a job having these issues, isn't it?

    Alex,

    Making a cup of coffee first thing in the morning is quite comical for me. I could have written a multi-volume set so far, called "Coffee Chronicles". The number and types of brain errors I have made just trying to get the coffee organized are amazing! Who ever knew there were so many choice points and separate movements, how many little tasks are involved within the one overall task of getting the finished cup of coffee on its saucer on the table. I eventually do, but have had to swab down the decks more than once!

    Yes to problems with eating and also changing topics. Another aspect of the topics problem is encountering different people suddenly--on the phone or around town--and with each one, a different "program" is required. I struggle to retrieve the program and the data, so to speak... Then, within a conversation, pulling together the feeling aspects as well as the thinking aspects of a subject--there is another challenge of integration. So, I am peddling hard just to do what once my brain did automatically.

    I have to forgive myself, to apologize and explain sometimes to the other person, to laugh, to be sad--anyway, there it is!

    Sing
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Do you all use wheelchairs on bad days? We have one in the car and one in the house. Gives the body rest from walking when you have POTS for sure. I have much better days, on bad days if I use my w.chair.

    I have about 37 supplements to take during the day. I have a nice area in my kitchen for it and I use a bar stool to sit as I take them, mix the Dribose into OJ, etc. It all takes time, three times a day.
  8. Sing

    Sing Senior Member

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    Sallyblooms,

    I live alone and rent an apartment. No one to wheel a wheelchair except me and no space for it. But I sit, stand, move and lie down for strategic purposes--managing my "orthostatic intolerance" and also my need for stretching and movement--to keep my muscles and back out of trouble. I can do this fine as long as I can manage my own care (not have to fit into people's usual patterns and ideas of normal movement.

    Sing

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