About Me

My photo
I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Wednesday, March 27, 2013

A Request...

Lately I've had more than a few people on twitter who have approached me about various aspects of healthcare, whether they be about my view of what I think should be done about a particular matter or my information as a "co-victim" or any number of other issues regarding health.  Normally, I enjoy "hanging out" with my twitter family, but lately I've found it a bit unsettling because of the advice factor.  

I love sharing with friends and getting to know people (not necessarily in that order) and I admit that I feel honored that anyone would want to know something of any substance from me.  But the other side of that double-edged sword is that at times I don't feel comfortable about some of the questions posed to me. 

I know that this might sound rather hypocritical of me when I have a blog dealing with CFIDS/CFS /ME and fibromyalgia and  touch on any number of other issues.  I have, however,  made it clear that I'm not a doctor. Furthermore, if you recall my vocality about how it makes me uncomfortable that doctors are on twitter, think how uncomfortable I feel talking too much about information as a fellow patient, though unlike a doctor, I don't have "better" things to do!  But I do try to let you know that the things I talk about are information, generalizations and my own life experiences.  However, things have become so uncomfortable of late that I thought it was time to state my feelings about twitter and make a request.  First the problems with twitter comments/questions.

  • As already stated, I'm not a doctor, and don't want to give out medical advice, only saying things like, "this is MY experience," blah,blah, blah," or I've heard this, read this.  Furthermore, I do have my good sources.  However, a doctor I am not.
  • I've said often enough that I'm techno-UNsavvy and half the time I don't even know where to find questions, resorting to my email account to find messages to me.  Sad, I know!  But old dog, new tricks... you get the picture!   Half the time I'm afraid I'm appearing rude because it takes me forever to find things addressed to me, or because I don't put hash marks in correctly, and so forth. I'm trying to get the hang of twitter, but talk about ulcers!
  • To complicate issues, there are only 140 characters allowed for any tweet.  Do you see how long my posts are?  Is there anyone reading my blog who thinks for a moment that I can answer any question in 140 characters or less, much less complex questions?  Good heavens, half the time I don't even know what the person on twitter means at all, or even which post someone is referring to.  I know I must sound even more idiotic there than I do here! 
  • With twitter, answers need not only be short but thought out, quickly.  With my comments here on my blog I usually read a comment and give myself a day to allow the reader's comment to gel.  I have Fibro-brain, after all.  We are most certainly not quick on our feet!
  • Furthermore, to put things bluntly, I will not engage in a p*ssing contest!  Sorry for the vulgarity but that gets the point across most succinctly.  On this blog, I let comments come through and except for obvious spam (for Rogaine, etc.) I let comments through uncensored.  On twitter, I'm not sure I even see everything addressed to me.  However, I am not going to get into a "debate" with someone on here nor on twitter if I make a comment and circular reasoning is given as a retort.  Frankly, I could care less!  I know when NOT to kick "gomno."  My mom taught me the principle when I was a kid.  You kick it and it will smell and get all over your feet.  It's not worth the effort because for some people nothing will ever be enough, they will simply go around in circles: a little like Omarosa on "Celebrity Apprentice."  Who wants to argue with her?  She is not worth anyone's time and energy.  (Except for "The Donald," perhaps.)
  • Finally, a little bit of respect is appreciated.  I had one person ask me which medicine I'm taking for something.  No "please," no "would you mind sharing," or any of the niceties that our moms or kindergarten teachers taught us at a young age.  Just "what medicine are you taking?"  As I've stated before, I do have a private life and there are certain things I don't discuss.  Furthermore, if I get to know someone, I may feel more comfortable about mentioning what I'm taking and other such questions.  But to make a "demand" without a please or introduction?  I'm not playing that sort of game at all.  No one should have to either! 

So, I have a request.  You know I love feedback and comments.  I absolutely love them.  But please, if you want to discuss an issue, make that comment here on this blog and not on twitter.   For all the above reasons, there is just no way that I can even begin to comment on some of the issues when I get a 140-character message, which is complex and often incomprehensible - and be expected to answer back in 140 characters. For those who are unable to comment here, because of whatever computer problems, my Facebook page is another way to go - at least there we have more than 140 characters to put across a thought. 

I have no problems with anyone asking me if I can cover a certain issue or suggests a topic for me to address. If I can do it, I'll do so.  Or, if a comment to you is too long and complex, I can write a post as a reply, as I've done on at least one occasion.  But twitter is just too much for this old bag... in fact it's too short for anyone when it comes to serious and complex issues.

Sorry, but it's the only way I can see myself as being responsible.  And I know that some of you who have been extremely wonderful in the way you've asked me things, will immediately think that I've got you in mind, and that's not the case at all.  Passing the time of day, so to speak, is fun.  Being supportive of one another is wonderful.  Laughing together about silliness is a joy.  It's just the rest that becomes a problem....

As always, I hope all are doing their best, only better.  Ciao and paka! 

No comments:

Post a Comment