Tuesday, February 10, 2009

CFS / CFIDS Stories

When I took Matthew to our family doctor today (for bronchitis), the doctor told me of a 27 year old lady that he saw recently that now has Epstein-Barr Virus (EBV). He said she got married and contracted it from her new husband. (Is it contagious?) He said she used to work out and was a very strong girl, but when she came in, she was thin and he barely recognized her. Our doctor is a friend and I think he could see the panic on my face, so he commented that the lady is where Jessica was last year with it, and then he changed the subject. I'd like to hear some good positive stories...

At least we can be thankful that Jessica has improved quite a bit from last spring! And we have hope for continued improvement.


Renee said...

I have read that children and teens have a better chance of getting their life back to normal than adults with CFS. I dont know percentages but many go on to do well as long as they manage energy, etc.
As far as it being contagious....I have heard it can be sexually transmitted just like lyme...but no studies on this that I know of. I never let my kids or my grandkids drink from my glass or eat off my silver, etc. and I never kiss them on the mouth. Just in case.....
Jessica is better and that is a blessing!

Shelli said...

When I first came down with CFS, I tried (like most people do) to continue my normal routines. Needless to say, that attempt kept me in a continual crash, and CFS stripped my old life completely away. My work, my social life, my work out and diet habits, even my family responsibilities dropped down to zero. I hit rock bottom and couldn't move from there for awhile (forced recuperation, I now recognize). It gave me a lot of time to think and feel and search and discover what is really important to me. With a better understanding of what I want my life to be, CFS gave me permission to let go of dead weight activities and to rebuild my life the way I wanted to. Only the things that are most precious to me are allowed in now, because I don't have room for anything else.

I hope my story is a happy story, because it feels like it to me. I'm still rebuilding, but I feel healthy (you know, within context!) and excited about the possibilities in front of me.

Us said...


Thank you for the encouragement! And the information. We haven't been eating or drinking after each other lately - just in case - because the doctor kind of danced around the question of whether it was contagious when we asked him.
And, you're right, we are very blessed!

I hope you're having a good week.

Us said...


I really appreciate your story! We're learning about pacing, and watching what activities or how much of the activities Jessica does. And, letting in only what is most important is a good guideline. It IS a happy story especially if you're happy and feel good about your possibilities. I wish you the best going forward! Thanks for sharing your story.