Friday, April 3, 2009

More

From cfids.org:

This was written by a prominent CFIDS specialist MD who practices in Salt Lake City, UT:

From day one of a CFS diagnosis, it’s bad
news. People around an individual with CFS
may not understand the illness, how it feels or
what to do about it.

At first a CFS patient might
receive attention, but as months go by without the kind of
physical improvement people expect, those who once
offered support may disappear. The ongoing physical limitations
are accompanied by ongoing emotional trials.

Anacute illness is definitely traumatic, but most can muster a
good fight while actively seeking a diagnosis and some type
of rescue care. It’s living with the “C” in CFS that really
gets old. (Editor’s note: see “Trauma & CFS,” page 10.)

CFS can be especially punishing compared to other
chronic illness. Because the symptoms are difficult to
measure or prove clinically, they may be met with doubt
or disapproval by those whose support is needed most.

Because CFS follows a relapsing and remitting pattern, in
addition to feeling limited most of the time, patients can’t
predict when they’ll feel even moderately better or worse.

Because of the characteristic postexertional symptoms of
CFS, an honest effort to function or simply have a little fun
is often punished mercilessly by a relapse of pain, fatigue
and brain fog.

There are innumerable personal losses in the
present and potential losses projected far into the future.
Focusing on the loss can lead to a downward spiral that
can impact life in very tangible ways.

In order to thrive, anyone living with CFS must repeatedly
rejuvenate the will to live and to find joy in living,
even while chronically ill. It can be done! No one and no
disease can take away the freedom to choose how to
respond to a difficult situation.

8 comments:

Jozephine said...

Ain't that the truth! Thanks for dropping by my blog.

Waterstone Jewelry said...

That is SO true. My 16 year old has had this since '05 and the "chronic" does a fair amount of work on your system emotionally as well as physically. I find myself having to re-read CFIDS information every few months so that I don't forget what she's going through and blame her. It's tough. Having a network in place means the world.

cfswarrior said...

Jo-It's so true! It's always a pleasure to stop by your blog.

cfswarrior said...

Waterstone-

I'm so sorry your 16 year old has had this since age 12. It must be heartbreaking for you as a parent.

This is a hard illness to imagine into. She's lucky that you are have been and continue to learn about what this illness is like.

Terri

Renee said...

This is soooooooooo good. I am really glad you posted it and will share it myself.

Shelley said...

Here's hoping today is a good day, Jo!

Yesterday our son sat at the kitchen table reading along to song lyrics for the first time... for some reason I thought of you.

Kerry said...

Terri--Thank you posting this. I happen to be lucky enough to have the doctor who wrote these beautiful words of truth, to be my CFS doc. Could the truth of living with CFS be said any better?

Pris said...

Amen! It's the special friends who hang in there. I posted about a visit with one of those very special people in my blog just now.