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ME/CFS and Beating the Clock

Discussion in 'Phoenix Rising Articles' started by Jody, Jun 23, 2014.

  1. Jody

    Jody Senior Member

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    Jody submitted a new blog post:

    ME/CFS and Beating the Clock

    For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...

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    I have two clocks in my living room. One clock is on the wall across from where I usually sit at my computer. The other is on the wall to my left. I guess this might be an unusual arrangement, not to be found in most homes, but it has been practical for me.

    I have had long intense bouts of what I have called tendinitis over the years, affecting my neck, shoulders, arms, hands, legs and feet. My guess is that this is part of my particular brand of ME/CFS, but who knows.

    Depending on what area was crippled at any given time, being able to see a clock has been wholly dependent on its location. Sometimes I haven't been able to turn my head to the left, other times to the right. This setup has meant that I can always see what time it is.

    In some ways having a clock within view has been pointless not to mention frustrating. After all, when I'm incapacitated it's not like I'm going anywhere other than bedroom or bathroom -- and that as seldom as possible. But when time seems to drag interminably, being able to see the hands gradually moving reminds me that time is also moving as well. And in a way, it has helped.

    There was a period, though, about 10 years ago when the clocks were a real problem. Both of them are battery-operated, and both of them emitted a quiet tick with each passing second. At this point, I was having serious problems with ME/CFS symptoms of sound hypersensitivity ... and visual hypersensitivity ... along with hypersensitivity in general ... but those are stories for another time.

    I often had to retreat to my bedroom in those days to protect myself from the shattering, jarring effect that any noise had on me. That included conversation, music, TV and noises outside.

    This particular morning, though the house was quiet by most standards, I became all too aware of the ticking of both clocks. I don't know why it hadn't messed me up before that day, I just know that on that morning, I could hear both clocks ticking ... and since they weren't in sync with each other it was like each second was being marked twice. And the sound felt like it was drilling a hole through my head.

    My husband Alan wasn't even aware of the sound until he saw the tears running down my face. I told him I was going to have to leave the room and go to bed. His response was to take both clocks down and pull out their batteries. I was touched that he'd prefer to go without knowing what time it was rather than have me cooped up for even more of the day than I usually was.

    Mind you, it's not like he cared that much about being able to see the time at any and every moment of the day, like I do. But even so, the fact that he took action in order to protect me made the tears flow more heavily. And this time it was out of gratitude instead of despair.

    People dealing with such sensory challenges when living with a chronic illness like ME/CFS can run into major hassles anytime, anywhere. Very few people are aware of this. I certainly was ignorant of such things before it happened to me.

    I am thankful to be living with a man who takes my word for it even when he can't hear or see the problem himself. We all need more people like this in our lives to be our champions and protectors, who want to take care of us with no strings attached.

    Those clocks were stored away for several years. After a period of very slow improvement and recovery, we brought one back out to see whether I could be in the same room with it or not. I was thrilled to find that it didn't pose a problem for me anymore.

    We thought maybe one clock was enough, thought maybe we could be more "normal" and not have clocks all over the walls. That lasted for awhile, until I got hit with another string of crippling tendinitis, first on one side and immediately following, on the other side. We decided being normal wasn't as important as having things set up so they worked for us.

    The tendinitis seems to have eased up, due to acupuncture, chiropractic, and also due to changing the chair and computer arrangement I'd been working with previously. I don't know if I'll get hit with it again in the future or not, but I haven't been crippled for quite awhile and I am hopeful.

    But I still want two clocks in my living room. Partly as a guarantee that no matter what I can always see one of them, crippled or not.
    But they're also like trophies. They represent a battle that so far I have won -- they no longer chase me out of the room -- and I like to look up at one or the other of them and remind myself of this.

    Have you had seemingly small things present insurmountable problems in your daily life due to ME/CFS?


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    Continue reading the Original Blog Post
     
    Last edited: Jun 23, 2014
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  2. xchocoholic

    xchocoholic Senior Member

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    Thanks again for another thought provoking article.

    I made the mistake of buying one of those clocks with different bird sounds every hour. I don't think I had the batteries in it for more than 24 hours.

    I know what you mean when you say having a clock nearby can be frustrating too. Everytime I have PEM by afternoon I'm shocked by how late it is and how little I've accomplished. And before I know it, it's time to get ready for bed again. My pre cfs self is always on my case for letting this happen. Lol.

    Tx .. x
     
    Last edited: Jun 23, 2014
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  3. Jody

    Jody Senior Member

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    Bird sounds, xchocoloholic?:)

    Sounds like a prescription for trouble. I'm not surprised it didn't last long.:)
     
    xchocoholic likes this.
  4. Tired of being sick

    Tired of being sick Senior Member

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    Time has been out of my life for over 6 years now

    Time waits for no one
    So I returned the favor
     
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  5. xchocoholic

    xchocoholic Senior Member

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    I just checked and they're still available. I enjoy listening to wild birds sing. It just wasn't the same coming from a clock every hour on the hour.

    Tc .. x
     
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  6. rosie26

    rosie26 Senior Member

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    I had to change our clock over to a silent ticking one Jody. It used to hang near my budgies in the lounge. We could see it from the kitchen as well. But I became concerned for my budgies as well thinking it might be horrible for their ears also. I bought one that was quiet but the new one was too big to fit in the previous spot, so I placed it in the kitchen but it took months and months to stop looking into the lounge - that was really irritating.

    I can't believe it has been 12 years since I have had this illness. I just said to another member the other day, I have all this time but not enough time to do stuff because of how much I am not able to do in one day. I can only concentrate for so long on one thing and then need to rest. I have so much time but a lot of it is resting the brain and body.
     
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  7. Jody

    Jody Senior Member

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    Rosie26,

    I can so relate, both the crazy clock scenario, and also to the paradox of how we must dole out our time. We need so much downtime in order to get anything done.

    Well said.
     
    rosie26 likes this.

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