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Author Topic: Bob's Blog 5-4-13: Dialyzing...Not Socializing?  (Read 6536 times)
cariad
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What's past is prologue

« Reply #25 on: May 16, 2013, 02:15:50 PM »

In thinking why I dread opening my inbox, I think it is that I get a lot of emails from people who found my name on the internet and who are struggling with some aspect of their kidney disease, or who are at a center that is suboptimal or who can't get a preferred treatment or are being given a line of bs about why they aren't allowed to do something or are in general fighting with their center. And then there are the people who want me to do something like speak at a function or participate in a project or some advocacy, which I appreciate and there was a time when I did that sort of stuff  but right now not so much, but I try to respond since I know what it feels like to be trying to do something and not getting engagement. But it all takes time and energy.
!!!!!!!
This is classic burnout and I'm amazed it didn't happen sooner. This reminds me of a sourdough starter recipe I found on the internet and it was funny (it had nothing to do with disease, which helped with the humor immensely) because the poor author could not convince the internet that he was no longer interested in discussing sourdough starter, despite writing it on every corner of his site. So his FAQ was filled with sarcastic questions like "Since you once put up a website about sourdough starter, shouldn't you be required to answer every email question you receive on that subject forever and ever until the end of time?"

Not sure you qualify as an introvert. I'd say if you don't already have a private email that cannot be found via google, set one up and have friends contact you through that. Set up an autoreply with the other one saying thanks for contacting me but I am unable to answer any further queries regarding dialysis and kidney failure, I wish you the best of luck. It may sound cold, but that's what I'd do.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
Riki
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« Reply #26 on: May 18, 2013, 09:40:08 AM »

A few weeks ago, I filled out a survey for a class at Stanford who are doing a study on superfans, and decided they wanted to focus on Stephen Colbert fans.  At the end of the survey, it asked if I would be available for a skype chat with students from the class.  Thinking that they'd never contact me, I said yes.

On Wednesday, I got an email from them, asking if I'd be available on Thursday for an hour and a half to be interviewed by three or more pairs of students for the study.  I sat on it for three hours before emailing them back.  My thought was, although it terrifies me to talk to complete strangers face to face, this is facing my fears, and that's a good thing.  I agreed to do it.

On Thursday, just as the hour and a half was beginning, I got another email from them, saying that I was scheduled for the second half of the class, and they weren't sure if they would get to everyone, and to "sit tight."  Now, for any of this to make sense, I need to explain something.  I discovered a while back, that when I get upset, or nervous, I will absently pick at my skin until it bleeds.  Sometimes I don't even realize I'm doing it until I have blood on my fingers.  Even though I tried to occupy my mind while waiting for the call with online games, I still managed to pick a new spot on my right arm.  Heck, I picked a spot on my knee while writing this out.

They never did get to me, so I sat in front of my computer, and picked a spot on my arm for an hour and a half and I didn't even speak to anybody.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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