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Thread: Decreasing support and how to find more support.

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  1. #1
    Join Date
    Jul 2010
    see map location in MN
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    Default Decreasing support and how to find more support.

    When I was in the hospital for the first time i was surprised and impressed by the number of calls, cards, visits when possible, phone calls and emails offering supportive encouragement to me and my family. Once my survival was more probable the contacts seemed to decrease some. They decreased further when I went to rehab hospital and later a nursing home for more rehab work and even more after I went back home. This sort of puzzled me since the most visits and support seemed to come when i was often too sick to really communicate much. As I got better and more able to actually visit with people I had less opportunities to do so. I could certainly do more things when in a nursing home than when I was in ICU units but the Wegs caused major life changes in social relationships that persist.

    The damage from Wegs has hindered or limited my ability to stay involved in most of the groups, and activities I enjoyed before the illness. Loss of hearing, limited energy, limited walking are real physical limitations. Emotional variability and mood swings from pred meds, and busy medical appointment schedule created another social barrier. The increased financial costs from increased medical needs also did major damage to my finances and created another major obstacle to what I could do.

    Now I have regained some hearing from BAHA type surgery I might be able to participate more in some social activities but still have the other limitations. Friendships based upon a shared interest seem to wane or disappear when one can't participate in the activity anymore.

    Sometimes our family and friends don't seem able to adjust to our new level of functioning and new "normal" very well either. They may be unsupportive or rather critical if they can't understand our illness or accept our limitations. I know divorce and other family disruption can happen in these circumstances which only creates more stress for us.

    How many people are lucky enough to have a good face to face group? How many people find internet friends to be their main source or support?
    Last edited by drz; 12-19-2018 at 01:51 AM.


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