Written by Barbara - Admin   
Saturday, 23 February 2008

 "To dream of the person you would like to be is to waste the person you are"
- Anonymous

I’ve always believed that ignorance is not bliss.  An educated patient may be annoying to a physician, but as people with this disease, we must be proactive and not reactive.  We must be our own advocate.  And so I have decided to create this site in the hopes that we may  all become more informed and perhaps help each other along the way.
So many men, women and children are just starting out on this journey that many of us have been on for a long time.  Let’s take a moment to introduce ourselves and our story … we all have one.

My name is Barbara and I’ve had CFS for 27 years.  It took me nine months to get a diagnosis back in 1988.  I saw a General Practitioner, Psychiatrist, Pulmonary Specialist (who by the way told me that I was deconditioned and needed to join a health club), went to Mayo Clinic, a Cardiologist who surprisingly enough told me he thought I had something called Chronic Fatigue Syndrome and sent me to an Infectious Disease Specialist.  Does any of this sound familiar?  If there is a moral to all of this, it is that you and only you know the truth about your health.  If you feel you are sick, never give up searching for the truth just because a doctor tells you it’s in your head.

Once I had those golden words that confirmed that I had a real illness, I decided to travel to North Carolina to see Dr. Paul Cheney, an early researcher and doctor whose entire practice consisted of people just like me.  I saw Dr. Cheney once a year for several years, always willing to try the next new thing that research pointed at.  Pills, shots, lozenges, you name it, I took it.  For me nothing changed.  Well actually something did change.  My mistakes at work were becoming more frequent and I wasn’t catching them.  I needed people to take on my responsibilities so I could take a day or week off just to keep up.  It was during this period that I realized that the person I had been all my life had disappeared and was replaced with a stranger. 

I’ve learned over the years to know this new person very well.  I’ve gone though all the major emotional steps of grieving the loss of myself, but I’ve also learned to compensate for some of the loss.  We all can do that and should.

I also was diagnosed with Fibromyalgia probably 8 years ago.  Have you found a way to deal with the pain and do you have suggestions for others? 

Together we can post informative ways to cope.  News from the research expert’s articles from yesterday to what the medical journals are saying around the world about the future for us.  Think how beneficial this would have been when we were first starting out on this frightening journey.  Let’s help those whose feet are about to step into the world of CFS.

Are you a member of our message board?  If not, we'd love to have you join us.  Just click FORUM at the side menu and you will be directed there.  The registration process is very simple.  Our group is small, but very friendly and we work hard at supporting each other.  We also try to keep the mood light.  Take a moment to have a look!
Last Updated ( Saturday, 21 February 2015 )