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rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/24/2006 9:56 AM (GMT -7)   
Hey Everyone
 
I know this sounds funny, but please read on. A friend emailed this to me and tho it's LONG, it's worth the read. Of course it's about Lupus, but the real intent is to show folks who aren't sick with any cronic illness just a glimpse of how it feels to deal with things unseen that seem to consume our lives. One other very important consideration...we have a member who is sick with both ms and lupus. Consider her tremedous fight.
 
 
Rhonda, someone pointed out to me that this wonderful story has an author and has a copyright.  I hope you don't mind that I revised this.  It is so beautiful.  I am so glad you posted this and so glad it was recently bumped. 
 

Post Edited By Moderator (Gretchen1) : 7/16/2008 8:22:43 AM (GMT-6)


mesea
Regular Member


Date Joined Nov 2006
Total Posts : 162
   Posted 11/24/2006 1:47 PM (GMT -7)   
Wow!!!  That describes how I've been feeling a lot for years.  As I was reading this I thought about how I had been feeling over the last week or so.  Wed morning I woke up feeling very good and have felt good ever since.  Before that for a week I just felt like I could hardly move.  I knew I had to work but I was just so tired.  Someone once told me that u have to decide what ur going to spend ur energy on.  That is even more important when u have some kind of disability or are sick.
 
 

tropical dreams
Regular Member


Date Joined Sep 2006
Total Posts : 76
   Posted 11/30/2006 8:33 AM (GMT -7)   
I loved this, thanks so much for sharing this.
Dx 08/02/06 MS
Betaseron


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 11/30/2006 9:10 PM (GMT -7)   
Thanks for posting that Rhonda.. it's really good.  I made my fiance read it, and he has been referencing my "spoons" ever since! 
 
tongue  
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


dvmtobe
New Member


Date Joined Nov 2006
Total Posts : 19
   Posted 12/2/2006 4:58 AM (GMT -7)   
That was just what I needed to read this morning. I couldn't sleep at all last night and I have been sitting here fretting over whether or not I am going to have the energy to make it through Saturday with the kids and the hubby -- knowing I should try and go back to sleep but knowing that my mind will not let me. I have been trying for so long to grasp just exactly what it is about the past few years of my life that have been so different (aside from the bizzaro medical problems). That's what it is...my daily allowance of spoons has been slowly diminishing!
Although I have only recently found this site I am so grateful. Thank you all -- I look forward to getting to know you all better.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/14/2008 3:06 PM (GMT -7)   

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 7/14/2008 8:21 PM (GMT -7)   
Incredible post Rhonda, thankyou! It says it so much better than I could ever imagine... I've just gotten so I just don't think anyone understands cos they can't see it, so I just go on about being me as much I can be.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 7/15/2008 9:23 PM (GMT -7)   

Totally perfect and I'm going to attempt to cut and paste for sharing.  I would have replied sooner but I used up all my spoons too early Saturday and borrowed some from Sunday and Monday apparently.   I drove 60 miles with my two boys and two friends to take them to an activity.  Then I spent 8 hours in the City and probably walked a combined 4 or 5 miles (way more than I ever do) and was outside too much in heat and sun, then drove home the 60 miles.  If it hadn't been so hot I would have had a rest in the car and been okay, but there was no where to rest!  In the future I'll put a cooler of ice in the car with my vest-so I can use it in the afternoon when I need it.  But actually, in the future, for that kind of activity I think I need a driver.  And for the moment, that still makes me mad.  And sad.  But at least the spoons give me a way to explain to others.  Willow

 


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 7/17/2008 8:04 PM (GMT -7)   
I keep this site in my favorites and when I am feeling especially bad, I sit down and read it so that I can figure out my next move. It helps me remember that I can only do what I can and not to worry about the rest.

Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  Starting Betaseron for MS
 
co-mod for Fibro


calicorosie
Regular Member


Date Joined Aug 2007
Total Posts : 48
   Posted 7/26/2008 1:18 AM (GMT -7)   
Thanks for bumping this. It was such a great read :)
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