Important Press Release - CFIDS awareness

[wordbyrd]

I've had CFIDS for over 16 years. If you get a chance, please watch the NBC Evening News tonight (Thursday) or the CBS Evening News tomorrow (Friday), or take the time to click on one or more of the links to learn more about CFIDS. This syndrome affects hundreds of thousands of people in the U.S. alone. Millions of dollars appropriated by the

Comments

[joeltpw]

Thanks for the info and links.

I knew next to nothing about CFIDS, and I knew nothing about the CFIDS awareness campaign. I tend to get a little wary of trying to raise awareness for anything because half the time I question my own motives. I myself struggle with self injury which has an awareness day on March 1st and sometimes around that day I try to inform others about the issue, I'm glad you took the time to write a post, if nothing else it made me more aware!

~Joel

Awareness

[wordbyrd]

Thanks, Joel, for your comments. Awareness is important. And the fact that the CDC has FINALLY publically declared that yes, CFIDS is a syndrome that has valid research to confirm it, perhaps more can be done to pinpoint its cause(s) and develop effective treatment(s), so that people with CFIDS can recover part, if not all, of the productive lives they have lost. There have been independently funded research studies done for many years, and reams of evidence about the potential cause(s) of CFIDS, but sadly, it's only now that the "official" declaration has been made by the government. I could rant and rave, but I won't.

I can't claim to be an expert on self-injury but I've done some reading and want you to know that I empathize with your struggle to come to grips with this syndrome. And I understand in ways I'm not comfortable expressing in LiveJournal. If you would ever like to talk, I'm here. You can get my email addy and/or phone number from Karne_Asada.

You're very much in my thoughts and prayers, Joel.

--MommaWB

Re: Awareness

[joeltpw]

Thanks for the thoughts and prayers.

A lot of times I do wish I had people who understand at least somewhat to talk with, mainly because I think it helps me deal with things in a much safer and productive way.

~Joel

[jamaicabeth]

I thought you might like this: http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

Spoon Theory

[wordbyrd]

Yes, The Spoon Theory is awesome - I'm very familiar with it (and the website from which it came). Thanks for sharing the link - hopefully others will take the time to read it, as it applies to all chronic illnesses, not just CFIDS.

I just finished an online course for people with CFIDS that utilizes aspects of cognitive behavioral therapy to teach us how to better cope with our illness. It incorporates the wisdom of staying within one's "energy envelope" and doing "pre-emptive rest" in order to avoid the "push-relapse" cycle, among other things. I'm guilty of taking advantage of good hours and days and pushing to cram as much activity as possible into them, even though I know the relapse is inevitable. Dumb, dumb, dumb. I'm a slow study - 16 years - but I'm learning.

Thanks, sweetie, for your post. I've been following the progress of your fundraising for the upcoming Jamaica mission and share your excitement that your financial goal has been met (and exceeded).

In my thoughts and prayers, as always,
--MommaWB