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Thread: Matt Allen..Always making a conscious effort is exhausting

  1. #1
    Distinguished Community Member Lazarus's Avatar
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    Default Matt Allen..Always making a conscious effort is exhausting

    I copied this article from another MS site. It was posted on May 3, 2018. I love it because it is so perfect in describing my situation. I think many of you will relate too...

    For so much of my life, most of what I did was just second nature to me, as it is to most other people. When I wanted to get up off the couch and walk to the kitchen, I didnt have to think about each physical step required to get there, I just walked. Not anymore though; now I am constantly aware of each step; the position of my heel and toes, the angle of my ankle, what direction my torso is leaning, how tense my core muscles are, where I intend to be in time and space after each step, and so on. The simple act of walking is made up of so many intricate moving parts, and usually, people dont even notice them.

    Having to think about every little thing
    These tiny movements are second nature, things that our brain works on behind the scenes so that we dont actually have to think about them. But so many of the things that my brain used to take care of on its own are now up to me to make a conscious effort to keep working properly. If I dont take manual control over my body, chances are my autopilot will totally fail and cause me to trip and fall. This doesnt just apply to walking though, it seems to apply to everything I do from the moment I wake up till the moment I go to sleep. Its exhausting! Having to think about every little thing I do I cant imagine that this is not a major contributing factor to my fatigue!

    The simple act of holding a glass
    Now, walking is one thing. In fact, I can even see how someone could read what I just said and think, well, yeah, if you have become more physically disabled I can see how walking could require more of an effort, but at least you can still walk, and yeah, I am grateful that I can, even if it requires more effort. But here is another one that I am pretty sure a lot of people with Multiple Sclerosis (MS) can relate to: the simple act of holding something in your hand. Lets say it is just a glass of water. Most people could stand it the kitchen with a glass of water in their hand and carry out a conversation with someone without even thinking about how they are holding the glass. Im not saying they arent aware that they have a glass in their hand, Im saying they probably arent thinking about how they are physically holding it; how a certain amount of strength is required to be able to grip that glass hard enough to not drop it while not so hard that it cracks in their hand. I feel like I cant give someone my undivided attention when I have to make such a conscious effort to keep that glass in my hand.

    Its really frustrating
    So, you will almost never see me holding a glass that doesnt have a handle, because so often when I am holding an object (such as a glass or a bottle of pills) in my hand, I will randomly just let go and watch it fall to the floor. Picking up a bunch of pills off the floor really sucks, but not like cleaning up a mess of wet glass that just exploded across the floor. Its really frustrating because I can watch it happen; I can be looking at my hand holding an object, and then just let go of it as if the wire carrying the signal from my brain to my hand instructing it to hold on tight was just randomly cut. I almost always have to think, dont let go, dont let go, hold on to it, dont drop it when I am holding something so that I dont lose my grip on it. This is mentally exhausting, so I tend to just avoid holding on to anything that I wouldnt mind dropping so that I can help lighten the load on my brain. In computer terms, it feels like my CPU (brain) is always working at 100% and never gets a chance to just relax.

    Too much input
    Another way I imagine a lot of what I have to do is like Im flying a helicopter. I obviously dont know how to fly a helicopter or a plane, but I imagine that in more modern vehicles of the sky, a computer handles a lot of the work so that the pilot can focus on whats important instead of every single little gauge. But in the vehicle that is my body, I feel like I am sitting in a cockpit full of hundreds of tiny gauges that are both feeding me inaccurate data as well as spinning out of control and somehow I have to figure out what they are all trying to tell me so that I can keep my body from crashing. There is just too much input! I cant keep up with all the data, interpret what it is trying to tell me, and keep myself functioning smoothly so instead, I inevitably will (from time to time) trip over my own feet or drop whatever I am holding because constantly trying to make a conscious effort to do the things that I never had to think about doing before is just exhausting! Talk about multitasking!
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  3. #2
    Distinguished Community Member Cherie's Avatar
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    Matt works with us at iConquerMS.org managing our social media sites.

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    Distinguished Community Member Sunshine's Avatar
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    Perfect Laz. Totally get this. The holding of the glass— so true. All of it.

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    Distinguished Community Member SuzE-Q's Avatar
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    Oh yeah, I can relate too!
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  9. #5
    Distinguished Community Member Sunshine's Avatar
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    Here is an idea:
    An OT eval on my hands , done because I complained about dropping things unless very careful,showed reduced sensation on certain fingers and certain parts of the finger.

    The OT said that therefore, the brain is not receiving constant feedback from the nerves in the fingers that it is touching something. Thus, if not attending g to my fingers and the glass it was holding, the brain stops holding the glass.

    The OT said the solution is to stop multitasking. When picking up and holding glass, keep my mind in it so that the brain doesn’t release it despite poor signals that the hand is holding something.

    Made sense. I had already started to do that, but for the wrong reason. I had thought I simply forgot I was holding a glass due to STM problems from meds. That’s not the reason though. It’s that the fingers themseelves were not signaling the brain to keep holding the glass.

    You might use this knowledge for your own life too.

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    Distinguished Community Member agate's Avatar
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    Multitasking is something I definitely can't do any more, at all.

    I found that picking up or setting down a cup or anything else, or moving something from one place to another, works best if I follow my hand movements with my eyes. That way I have to pay attention to what I'm doing and slow down.

    Fast is supposed to be good for most tasks. For me doing anything fast is a surefire way to make mistakes, drop and spill things, break things.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  13. #7
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    Multitasking is something I definitely can't do any more, at all.

    I found that picking up or setting down a cup or anything else, or moving something from one place to another, works best if I follow my hand movements with my eyes. That way I have to pay attention to what I'm doing and slow down.

    Fast is supposed to be good for most tasks. For me doing anything fast is a surefire way to make mistakes, drop and spill things, break things.
    Today I had a lot of Farm work to do and it was hard. I am a few weeks away from getting rituxan and it is wearing off so although I started the day well I had a lot of trouble finishing. The thing these days is that I can not stand it if someone tries to talk with me while I am doing a specific job. I have to stop moving to listen to what is said or to answer what I am asked. Even then it feels so painful to have all the sounds of speech in my head. I really have to concentrate and do one thing at a time...or maybe to keep my a focus on one activity at a time..
    Whatever happens it is very uncomfortable but I would have a hard time telling you where except it hurts in my head. Maybe a lot of sleep tonight will help
    Last edited by Lazarus; 05-17-2018 at 02:50 PM.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Quote Originally Posted by Lazarus View Post
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    Today I had a lot of Farm work to do and it was hard. I am a few weeks away from getting rituxan and it is wearing off so although I started the day well I had a lot of trouble finishing. The thing these days is that I can not stand it if someone tries to talk with me while I am doing a specific job. I have to stop moving to listen to what is said or to answer what I am asked. Even then it feels so painful to have all the sounds of speech in my head. I really have to concentrate and do one thing at a time...or maybe to keep my a focus on one activity at a time..
    Whatever happens it is very uncomfortable but I would have a hard time telling you where except it hurts in my head. Maybe a lot of sleep tonight will help
    I think I can, I think I can...a few weeks and you get spinach. Bad timing with the market just starting but keep things small until after spinach. ❤️

    This article rings So true.
    Hoping my spinach in late July does something
    Wish I could help, Linda. Maybe at some point. Staying optimistic 👍
    Be the person your dog thinks you are

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    Yes, this has been an issue for me for years. It was almost a relief for me to end up in a wheelchair -- I didn't have to think through the walking process. And if I'm doing something even while in my chair, concentrating on what I'm doing, it's like then I can't hear, or fully comprehend, what is being said to me. Drives both of us a bit crazy, because between that and my hearing loss, my husband has to repeat everything all the time.

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