Expert: Candy - 7/8/2008

Question
Candy, when you were very ill, and you still had to juggle all of lifes demands, did you find a certain system that worked for you so that you still could be functional?
I know that "racing for the cure" as fast as you can, doesn't get you too far, and doing nothing gets boring and frustrating, but it is all so meaningless.  I have been sick for 9 years, but the problem is i have a 2nd seiouse diagnosis/disability and I have been single, on my own with no family or friends. Had to be homeless for a short time, and if i dont go to the store i dont eat. If i dont do the laundry I wear dirty underware.
This is not good, but after many years it becomes unbearable.
thank you for any direction.


Answer
I am still what you would call "very ill" but in the beginning I learned a valuable lesson. I would try to do as much as possible on my good days to make up for what I didn't get done during my bad days and to try and get a head start on stuff for the bad days ahead.  That only made those come faster and me feel worse.  So I got rid of my list of things to do and now I just do what I can and try not to over work myself.  Are you on Social Security Disablity?  That helps with the financial worries.  Something else that helps me is that I joined a CFIDS support group and we all try to help each other.  When I am unable to get to the store and there is someone from the group who is up to it they will go for me (and, of course, I return the favor when I can).  I am inclosing some websites that may help you find a support group in your area.

www.cfids.org

www.ncf-net.org

www.cfidsselfhelp.org

wwcoco.com/cfids/forms.html

www.cfidsers.org

www.supportalk.com/detail-1244625.html

virtualhometown.com/dfwcfids/doctor.html

www.cdc.gov/ncidod/diseases/cfs/support/supus.htm

www.healingwell.com/pages/Chronic_Fatigue_Syndrome/Organizations

I hope this helps.