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Thread: Who are you without your MS? Loss of identity essay that touched a nerve in me.

  1. #11
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    Oh, I suspect for me it's depression. I can sink pretty low sometimes, and "moderately low" most of the time! :) Yes, cooking...I do like to cook and bake. I keep tossing TC's stuff out of *my kitchen* so I have room to do that. I think his stuff all over is a big depression trigger for me -- I can't move through much of the house, anymore, because of his stuff... (he's a hoarder).
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

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  3. #12
    Distinguished Community Member BBS1951's Avatar
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    You’re a saint for living with hoarding. That would send me to the psych ward. Or a diff home.

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  5. #13
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Cat Dancer View Post
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    Oh, I suspect for me it's depression. I can sink pretty low sometimes, and "moderately low" most of the time! :) Yes, cooking...I do like to cook and bake. I keep tossing TC's stuff out of *my kitchen* so I have room to do that. I think his stuff all over is a big depression trigger for me -- I can't move through much of the house, anymore, because of his stuff... (he's a hoarder).
    My husband John is your husband's missing twin. Depression, hoarder husband and no control over what my house looks like because of it, and identifying as a farmer almost totally now. ☹️
    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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  7. #14
    Distinguished Community Member nuthatch's Avatar
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    I find frustration my biggest issue with MS. It is always getting in the way of my ambition. I had big plans of doing the things I wanted to do when I finally had the time, once the kids were out on their own and I no longer had to work. I am have mountains of sewing and other projects to do, but because being confined to a wheelchair, I can no longer spread out fabric on the floor to lay out a pattern to sew, let alone operate my sewing machines using foot pedals, when I can't move my feet or legs at all. I continually seek out new creative outlets, but am often frustrated that disability gets in my way, be it fatigue, dexterity, accessibility, ect.

    What used to be the simplest thing to do, is now so difficult and takes much more effort and much longer to do. Housekeeping is a huge frustration for me. DH does not have the same standards as I do. It bothers me that he can watch me struggling to do something that can take me 2 hours, and he can do it in 5 minutes. It reminds me about the "spoons" story I read here years ago.

    Anyway, I feel it's all about adjusting, adapting, accepting and refocusing, rather than fighting and mourning losses.

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  9. #15
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    This is a fascinating essay. Thank you! I know people who let their disability utterly consume their identity to the point where it is unhealthy, I'm somewhat guilty of this too. I think people confuse external aspects of themselves like what they do or what they look like etc with Who They Are, instead of maybe approaching it from an internal aspect like a spirit or soul or what have you. As a person with brain damage from CP I also happen to think we are more than our brains, like there is something beyond those circuits that make us human and gives each life value.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  11. #16
    Distinguished Community Member Howie's Avatar
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    This is a great thread. I would give a man's view, but I'm so tired, and have tried to sleep, but couldn't, so I'm drinking coffee, and staying up and watching TV. I'll post tomorrow. Night ladies!
    Roswell was a gift.

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  13. #17
    Distinguished Community Member BBS1951's Avatar
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    Maybe living with a hoarder is like living with an alcoholic? I wonder if some of the principles of Al Anon used for the spouse of alcoholics can apply to married to a hoarder?

    A good hurricane can cure hoarding. Or a tornado :}

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  15. #18
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    BBS, our first house burned down (not his fault..a gas water heater pilot light went out; a spark ignited the accumulated gas). I thought that would take care of it. 10 years later and another house, and we were stuffed to the gills. That house flooded out...twice...(not his fault) and I thought that would take care of it. We moved here and it was good for the first 10 years: I had a 3 car garage built (in addition to the 2 car garage that attaches to the house), and the house has a full basement. I had one part of the basement where my elevator shaft opened out, and had the washer, dryer, a table, and other stuff to do laundry, which remained relatively hoard-free.

    While I was relatively well, I kept the main house relatively hoard free. An occasional stack of magazines would pile up, and I'd take them downstairs. The hallway would get full of stuff and I'd sort through it, hang up the no-longer worn clothes, toss out the obvious trash. In other words, while I was more able, I beat back the hoards, for the most part.

    Then I got sick. In just the four years, and with me in and out of the hospital, and nursing home, and bed-bound....he filled up most all available space. I have a hall between the bedroom and bath that is clear. The area right around one side and the foot of my bed is clear (and it's clear where the stand lift is parked). My bathroom is clear. I can move down the hall to the entrance to the living room, where I have this desk with my laptop. I can move through half of my study -- the other half is full of his stuff. I can move through half of my dollhouse workroom..the rest is full. I have one path in the dining room, leading from the kitchen, to the freezer. Sometimes this path gets full of stuff, so I have to plow through it to get to the freezer. The kitchen floor is open..except for one corner...but the kitchen table is full of stuff. The kitchen island occasionally gets full of stuff, but when it does, I move that stuff to the table. Basically, I have about 1/3 of the living space available to me. I can no longer do the laundry -- the laundry room is full of stuff. He does the laundry --I don't know how. I just know that it gets brought up for me to hang/fold, once a week or so. The rest of the house is full of stuff.

    Just today I yelled at him because I can't get out the front door -- my only exit to the house -- because the path to the doorway is now full of stuff. Someone came to the door today and I was unable to answer it, because I can't get there (it's OK..I think it was Jehovah's Witnesses.. :) ) So I'll have to nag about this tomorrow, to get it clear enough so I can get out the door in an emergency.

    It's tough living this way. But he's my primary care-giver. I love this place....even if I can't use but a third of it. And unless we pool our resources, we don't have enough $$ to establish two households, or for me to move into a nursing home full time unless we sell the house. So we're both stuck with each other "til death do us part'. Oh well. I've put up with it for 50 years....a few more are nothing...
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

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  17. #19
    Distinguished Community Member BBS1951's Avatar
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    That sounds pretty tough. Does he recognize he has a problem? Hoarding is a type of anxiety disorder, no?

    Anyway, you have had much to deal with, Fire, flood, MS, and this hoarding.

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  19. #20
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    Cat, this is a tough one. I think I would be tempted to get him out of the house somehow and have someone come in and start throwing away. Would he even notice if at least 1/2 of it got gone? I doubt it. He would fill that space up again so fast he wouldn't have time to realize it.
    Virginia

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