Update: I had the most wonderful day yesterday. I could go out with my family for a walk in the woods (I would lay down every 5 min) So I can definitely do a somewhat normal life if I follow the 5min on 5min off (rest) rule.
My family is adapting better. So it has made the whole difference in my life when we all understand and adapt. When we got to the trail my 5 year old saw a bench and said "mom u can rest here while we go on" so even she is adapting well.
My most powerful tool in my belt is pedialyte with salt. It takes me out of crashes. It doesn't take me out of relapse but when we have those short crashes it works wonderful.
I have a new theory that my brain fog has gotten worse because of the walks. Will test that one next.
Overall I feel progression of disease, but I have gotten better at living with it.
50 experts and 171 advocates oppose the HHS/IOM Contract to re-define ME/CFS.
Check out our IOM Contract Forum for the latest news and to join the campaign.
Demonstrations in San Francisco Dec 9th and Washington D.C. Dec 10th
How I can get out of crash (not relapse)
Blog entry posted by lnester7, Jul 23, 2012.