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Thread: Squeezing Every Moment Out Of Life is Exhausting!

  1. #1
    Community Member NeuroNixed Craig's Avatar
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    Smile Squeezing Every Moment Out Of Life is Exhausting!

    I know all of you can relate to this, either through your own experience or simple empathy and understanding.

    Nothing, especially our health circumstances, ever stays the same for very long. Meeting the ever changing challenges, most of us several times a day, is exhausting in itself. So I ask you, why do we continue to take on new projects? We know and understand we may be chronically ill, totally disabled, on the diagnosis journey and feeling like crap, so "what are we thinking?"

    I was not well enough to even attempt to travel to Disney World with my family and that ended up being a very wise decision, which I do not regret in the least. My neurological disease has now progressed to involve my bladder and now my diaphragm and lungs to the point they want to put me on oxygen.

    In the midst of all of this, I have been assisting a young neighbor woman who I've known since she was 8 years old, in writing and publishing her first book. This book demonstrates she has wisdom beyond her years. The book deals with one's discovery and journey of belief and faith in their life from the point of view of a young adult. I enjoy every moment working with her, especially watching her progress each day on this project. I am humbled she is honoring me with assisting her through this process and as a resource. This is a very exciting and yes, an exhausting process for me, but well worth the investment on my part.

    The big benefit to me is while working on her book and implementing her ideas, I am so focused on the process working on the computer I don't feel the pain or think of anything else. It is a true escape from reality for me. Since I just went through this entire process, being able to be of service to her is making a tremendous difference. She explains what she would like to see and I make it happen. Luckily, someone else is doing the editing of her written material, I just clean it up and put it in format for eventual submission to publish. I find it rewarding and exciting to share my abilities as a service to her.

    I know I will only be able to keep up this pace for only so long, but wow, what fun this is, pushing the envelop and for someone else's benefit. For the short time we are here, to be of benefit and service to another with no expectation of return or reward is a tremendous feeling of freedom.

    What are we thinking to take on projects like this, regardless our personal circumstances? Is there some need to always do something and in some way to add value to our lives? Like any other time in life it is directly related to being of service to others. Make every moment count. You never know what kind of difference you will make in someone else's life.
    NeuroNixed Craig
    Living Life On My Terms
    No Excuses No Regrets
    Richmond, VA, USA

  2. #2
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    What is particularly exhausting to me is focusing on my disability...on my DISability, rather than on my ABILITY.

    Indeed, there are lots of things I can't do anymore, including a lot of day-to-day stuff, even some personal care stuff. I could sit around and dwell on that, magnifying the losses, the pain, worrying about what doesn't work, how little energy I have compared to what I used to have..

    or I can do what I can do. In my case, I write, I build dollhouses, I am a lay minister to an on-line church community, I counsel people by telephone, I bake bread, I cook..

    and occasionally drop in here to annoy folks. It would be easier to sit at home in a state of mourning. But life's too short already; why hasten the process by "dying" before my time??
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

  3. #3
    Community Member NeuroNixed Craig's Avatar
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    Quote Originally Posted by Cat Dancer View Post
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    What is particularly exhausting to me is focusing on my disability...on my DISability, rather than on my ABILITY.
    OMG Cat! I hope I didn't give the impression I focus on my DISability vs. my ABILITY. I do share my particular realities without sugarcoating any aspects of my health challenges. Then, on the other hand, I don't hesitate in challenging my health challenges, pushing the envelope much to the displeasure of my wife and my doctor.
    Quote Originally Posted by Cat Dancer View Post
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    Indeed, there are lots of things I can't do anymore, including a lot of day-to-day stuff, even some personal care stuff. I could sit around and dwell on that, magnifying the losses, the pain, worrying about what doesn't work, how little energy I have compared to what I used to have..
    Amen to that! To do so would accomplish what? Of course we are all aware of what we "could" do vs. what we "can" do, but life must go on. To live with the "could do" mentality is no different than driving a car while only looking in the rear view mirror.
    Quote Originally Posted by Cat Dancer View Post
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    or I can do what I can do. In my case, I write, I build dollhouses, I am a lay minister to an on-line church community, I counsel people by telephone, I bake bread, I cook..
    The emphasis is by me, not Cat and she encompasses what life, regardless of one's circumstances, is all about. I will concede writing a book in the last year, but the other stuff.......well.....not my thing.
    Quote Originally Posted by Cat Dancer View Post
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    and occasionally drop in here to annoy folks. It would be easier to sit at home in a state of mourning. But life's too short already; why hasten the process by "dying" before my time??
    Obviously Cat, dropping by here and performing your mission so admirably surely indicates dying before your time is NOT part of the equation. Thank you for posting in your most recognized and appreciated manner. I know I enjoyed reading it and definitely having you back, even if only occasionally.
    NeuroNixed Craig
    Living Life On My Terms
    No Excuses No Regrets
    Richmond, VA, USA

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    Hey, Craig, I certainly wasn't targeting you with any of my comments. They're just my comments, put out there for anyone who might be interested. or not. :)

    Take care. Thanks for the support. BluntCat. :)
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

  5. #5
    Community Member NeuroNixed Craig's Avatar
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    Hi BC,

    I wasn't sure, yet the information ended up being of benefit to others and that is important. The points you presented were all right on target and summed up with the, "I can do what I can do," phrase. If only more people could simply "Get IT!"

    Cat, you've been there for me since I first came to the old BT and did a lot of good for me. Thank You! :)
    NeuroNixed Craig
    Living Life On My Terms
    No Excuses No Regrets
    Richmond, VA, USA

  6. #6
    Distinguished Community Member SalpalSally's Avatar
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    {{{Craig}}}Yes, squeezing everything out of life, when you have a chronic illness, is exhausting, but It's a good tired.:o
    Love, Sally


    "The best way out is always through". Robert Frost







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    Craig, what a new lease on life this must be for you. To be of service to someone else in a capacity you are familiar with and also enjoy. I think it is wonderful that this young lady has been in your life since age 8 and is at this time coming to you for advice and help. I have heard it said that there are no coincedences, so maybe your life came in contact with hers all those years ago partly for this reason.
    Virginia

  8. #8

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    Going to online forums like this one is a big release to me from "disability". I can still type well, but I am having eye trouble now,
    and have to limit my time at the computer, so that's frustrating, but I do think it's important to keep some "ability" things going.
    I go to a Bible study at church and it's worthwhile to keep up those friends, who are intelligent and kind. And seeing my grandchildren is, of course, the most "ability'" thing I now have, as I think I've helped them think things through, as grandparents are supposed to do (I'm surprised that this old concept really is valid). I keep thinking about moving to an assisted living, but it would have to be far from here, and I wouldn't have my "ability" sessions with the Bible study or the grandkids.

    I still cook better than any assisted living facility I've seen, and I would never be able to do the Swank diet in one of those places unless it was a facility for millionaires. They are supposed to have diet options, but so far I have not found one which has a real
    concept of what "low fat" means. When I said I would have to avoid fatty meat, one place said "well you can always have a grilled cheese sandwich". Talk about not getting it! Anyway, I'm grateful I can still shop for food and cook it. But doing the dishes from a wheelchair is hard--I have to do this, not because I can't walk, but because I can't bend over to load the machine without getting my back out. I use my husband's old wheelchair a lot, for many things.

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