User Tag List

Likes Likes:  0
Page 2 of 6 FirstFirst 1234 ... LastLast
Results 11 to 20 of 58

Thread: Decreasing support and how to find more support.

  1. #11
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,764
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by KathyB View Post
    Today was the first day back to school and the very first time I haven't been involved in education since I was 6 years old! My husband, too. (He has now retired from being a high school principal.). So we have focused on the excitement of our grandkids getting back to school. I found myself texting all my colleagues this morning wishing them a "Happy New Year!"
    KB, I've been out of education for, whew, 10 years now. I was healthy then, other circumstances dictated my leaving then, I was lucky to retire fairly early, especially now with the onset of WG. Anyway, I, too, called and emailed friends still in the business the first couple of years, got some responses, some even came and visited here in the desert (nice relief for them from the gloom of Oregon mist!). Even drove back to Oregon, visited the old high school I last worked in for 20 years, saw old friends. But things were changing already...whence I next visited the school, I knew less of the staff...then about 5 years after, I made one more visit...I knew exactly 5 people on staff. Haven't been back since, but I do keep in touch with the closest of those friends although a couple have died already. It's ever changing as you well know, but it's a shock once one realizes that it does/did change and they went on without me!! How dare they! LOL! Anyway, glad you're in that 'happy' mode, good place to be. Hope your appt went well. Don
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  2. #12
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,764
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    I believe what Bob suggests is really what happens, but it's a little deeper than that also. My closest friends, ones who supported me thru last year and still, are still within reach and in contact. I kind of expected that, but thought of some 'disappearing' over time. That includes the same kind of feelings I had when I retired...BUT, there are social and not so social people...those who are social expect, demand, and work at keeping up the activities (I'm lucky, I can still golf, but I'd be playing cards or something if I coudn't do that). Those of 'us' who still work, don't have to work as hard at social and physical activities as those are ever present and, frankly, just as big a pain as not being active cuz they drain one so much. I would imagine and have heard from others on here that they wish they had more down time. I am a social moderate, love people just understand that we are what we are...and I accept that...I do not accept the 'solitude' of this disease or any other...I was the worst patient! Believe me, I wanted out, I wanted to walk, I wanted my friends there...even tho I was incoherent and would fall flat on my face the first step! Ha! I watched my mother literally kill herself by holing up in her abode after Pop died...her heart finally calcified basically...hmmmm, a calcified life I may observe. Not going that way...will strive for 'touch' for as long as I can...it helps people a lot to make their own way that way...what??!?!??! LOL!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #13
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    13 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks Sangye. That is how I pretty much feel as well. You took the words right out of my mouth.
    Phil Berggren, dx 2003

  4. #14
    Join Date
    Jan 2010
    Location
    Yuma, Arizona 85364
    Posts
    952
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Dirty Don View Post
    I believe what Bob suggests is really what happens, but it's a little deeper than that also. My closest friends, ones who supported me thru last year and still, are still within reach and in contact. I kind of expected that, but thought of some 'disappearing' over time. That includes the same kind of feelings I had when I retired...BUT, there are social and not so social people...those who are social expect, demand, and work at keeping up the activities (I'm lucky, I can still golf, but I'd be playing cards or something if I coudn't do that). Those of 'us' who still work, don't have to work as hard at social and physical activities as those are ever present and, frankly, just as big a pain as not being active cuz they drain one so much. I would imagine and have heard from others on here that they wish they had more down time. I am a social moderate, love people just understand that we are what we are...and I accept that...I do not accept the 'solitude' of this disease or any other...I was the worst patient! Believe me, I wanted out, I wanted to walk, I wanted my friends there...even tho I was incoherent and would fall flat on my face the first step! Ha! I watched my mother literally kill herself by holing up in her abode after Pop died...her heart finally calcified basically...hmmmm, a calcified life I may observe. Not going that way...will strive for 'touch' for as long as I can...it helps people a lot to make their own way that way...what??!?!??! LOL!
    The skin is the largest organ that we have and our first layer of defense. There are actually chemical changes when we are touched that are beneficial. Our skin soaks up the light that we take in and we translate that light into the warmth that we give out to others. So I do agree with you that we are meant to be touched and we will wither and die without it.

  5. #15
    Join Date
    Feb 2010
    Location
    The Great and Wonderful Oz - Australia
    Posts
    20
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    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 were 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 regain 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.

    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?[/QUOTE]


    Thank you so much for starting this post. Firstly, because your symptoms seem to mirror mine, which makes this forum such a good support group ("You are not alone"), and secondly because we learn about "work-arounds" and to accept our limitations from each other. The hospital where I receive treatment has a group for patients with chronic disease. This seems to be pitched mostly towards diabetics and those with kidney disease. I've never been into group stuff...I'm a lurker and learner and a facilitator.

    I totally agree with what has been said about people tending to neglect us when we are no longer in danger of imminent death. My outward signs are deafness and an occassional hobbling walk when I stiffen up. My boss tends to forget how impaired I am (generally a good thing) but this wreaks havoc when my coworkers are talking about work decisions. However I have 2 workmates who befriended me and continue to support me. I wish everyone could have friends like these!

    And drz, thank you for mentioning BAHA. I'm going to have to look into that! See! I'm a lurker and learner!

    Oh, and one more thing. My family even goes back and forth with support. I used to be able to give Martha Stewart a run for her money, but now I rarely cook (but I generally don't eat dinner anyway, just a snack) and I do a whole lot less housekeeping. My family does the whole passive-agressive thing occassionally about my not cooking, but they still understand. And my house is definitely not as clean as I would like it, but thank goodness my family aren't neatniks (unless they can't find something! LOL!).
    Last edited by Hopeful; 09-06-2012 at 12:46 PM.

  6. #16
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,125
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Hopeful View Post
    Oh, and one more thing. My family even goes back and forth with support. I used to be able to give Martha Stewart a run for her money, but now I rarely cook (but I generally don't eat dinner anyway, just a snack) and I do a whole lot less housekeeping. My family does the whole passive-agressive thing occassionally about my not cooking, but they still understand. And my house is definitely not as clean as I would like it, but thank goodness my family aren't neatniks (unless they can't find something! LOL!).
    I think like Bob said earlier there is a fatigue factor. Family and some close friends can gear up some times for a short intense run but when the crisis seems to pass, and the fatigue sets in, frustration can build. We know or can feel what is going on inside us and often still get very frustrated and impatient about our"recovery" and have difficulty accepting our new "normal" if we lost a lot of our ability to function. It must be even harder for those around us as it slowly dawns on them that we might not get any better and they find it more difficult to accept our new limitations.

    Spouses and some friends may then bail out of the relationship since it isn't what they are used to or want anymore. Some might feel guilty about their inability to cope with your losses and also mourn the loss of the relationship with you but still either leave or try to restore it to former status by getting real critical and starting to blame you for not trying harder to get well. They may also think you are playing sick since you look better than you are.

    Maybe some of us do a better job of adjusting to our changes than people around us because of the support we get here and the fact we have to deal with our "stuff" 24 hours a day.

    Causal friends with whom you shared a common interest or activity will fade away when you don't show up or aren't able to participate in the shared activity anymore. Your golfing, bowling, fishing, hunting, work colleagues, card playing buddies, hiking, bird watching, or whatever activity you enjoyed together, or any of your social groups may miss you when you can't be there anymore but aren't likely to come seek you out unless they are also a close friend. If you can recover enough to resume attendance and participation in your mutual activity they may welcome your return, but have trouble understanding the "new you" or accepting your new limitations. Some of us have many new limitations such as loss of some physical abilities, loss in hearing or vision, trouble walking, poor coordination, lack of energy, low endurance, emotional variability, trouble concentrating, forgetfulness, depression, anxiety and others. Some of these might be due to damage from Wegs dog and some are side effects of lovely meds we have to take to survive like our new best friend Prednisone or others.

    This can really be a tough road when you return to work and find yourself struggling to do what used to be easy for you to do. I admire and empathize with those of you dealing with such work stress. Our increased need for medical attention and follow up can create another big source of stress and conflict at work when medical appointments cause absence from work.

    Hearing loss is one of the biggest obstacles to having good social interaction. Blind people often get much sympathy while hearing impaired people are often ridiculed and made fun of in jokes. Improving my hearing was a great morale booster for me. I bet Phil also agrees.

    I have found all your comments very helpful. Thanks for sharing.
    Last edited by drz; 09-07-2012 at 12:11 AM.

  7. #17
    Join Date
    Oct 2010
    Location
    The Netherlands
    Posts
    479
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hey drz! How are you doing?
    I tried to respond to your latest personal message, but your INBOX is full!!!!
    Please do something about it!!!
    Living with WG/GPA since june 2010...

  8. #18
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,125
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by [email protected] View Post
    Hey drz! How are you doing?
    I tried to respond to your latest personal message, but your INBOX is full!!!!
    Please do something about it!!!
    Working on it and sending out more. Thanks for heads up!

  9. #19
    Join Date
    May 2014
    Location
    Delta, BC
    Posts
    578
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default

    Illness like this can be very isolating. I don't have the energy to go out in the evening most of the time, but don't want to get into details with many people to explain why, so they likely think I'm antisocial. I find many former friends and acquaintances have dropped away and I'm left with the handful of real relationships with truly dependable friends and family. That's all I have time and energy for, but it still makes me sad how people forget about you when you don't meet their needs or aren't as much fun as you used to be.

    I'm experiencing a painful lack of support in my own household at the moment and I'm not sure how to handle it. A loved one seems to feel the need to question and challenge everything I'm doing and learning to deal with this disease and get the best care possible. I find myself having to explain and justify my concern, my time on this forum, my need for the support group and a second opinion. I'm faced with, "why don't you just wait until you know if you even have it?"; "how do you know your doctor isn't the best doctor? (I don't but I need to find out, and sooner than later). How do you know these people know who the best doctors are?" (Um, the one I'm corresponding with has had it for eight years and is in remission and alive. And is head of the support group, which exists to provide this information!) etc., etc. Since this person is a very concrete black and white thinker, I spelled it out: I do NOT need a devil's advocate right now. What I need is support. It didn't sink in so I ended the conversation. Now what to do with my anger so it doesn't inflame my cells... Any suggestions for dealing with this kind of behaviour short of changing mine and my children's entire life situation?!?!? I know he's in denial and trying to assume the best but he takes it to such a level that I feel like he thinks I've made it all up or am exaggerating my illness and/or the need for timely, specialized care. Sorry, I totally hijacked this... It seemed to fit generally under lack of support and I didn't realize how long a rant it would be until I got going. Thanks for listening!

  10. #20
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,908
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    I hear you, Lisa. I live alone and don't have to deal with that on a daily basis. But some family members, mainly siblings, can easily go into a state of denial that there is anything that unusual or serious about what I have, since I seem OK around them a lot of the time. I think they are getting it now, though, about me not being able to go out and do things a lot, how easily my energy gets sapped, and how much I need to rest. It may be slowly sinking in about how stress makes me worse. It WOULD be nice to have a domestic partner who was totally supportive, as opposed to dealing with this alone.... I guess I'd just say try not to resent him too much for something he doesn't understand, and the understanding may come, little by little. I guess that will mean just tuning out some of the stuff, too. Best to you, and I hope you get a dx soon, if you indeed have WG, or get to the bottom of what else may be going on. I know this advice won't be easy to follow......
    Anne, dx'ed April 2011

Page 2 of 6 FirstFirst 1234 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •