A Post from The PBCers Daily Digets

[Guest guest]

I am posting Cecile's  post from the PBCers Digest.  Joanne

 

Hi, Just read your post...am way behind.  I am wondering if you be would be ok

with my posting your post in our other Diget the        

I absolutely would not mind at all.    In fact, I’m very flattered.

 

All the best to you and yours for 2010!

 

Cecile             

Posted by: " Rick & Cecile " rc.allen@...   lavascecile

Thu Dec 24, 2009 9:56 pm (PST)

Pain and fatigue whether physical or mental, are subjective. They cannot be

measured, rated, compared or judged.

Not only do progression and symptoms vary widely amongst PBCers, their

intensity is even wider, considering we each have distinct body chemistries

and reactions. Ditto for mental disposition and outlook. Some of us are

naturally more positive and some of us are naturally more prone to

depression. Some of us need to vent anger and fear to get through it.

Others need to talk positively to feel better.

This debate reminds me of one that took place several months ago regarding

pain, narcotics and addiction. The discussion centered on the need for

narcotics to treat serious pain and the potential for associated addiction.

I was defending the use of long-term narcotic use based on my own personal

experience with pancreatitis. The discussion was getting very heated and

was finally halted by our Moderators but not before I was berated by one of

our members for stating that I actually had a momentary thought of ending my

life because my pancreatitis pain was so severe and prolonged, again in

defense of narcotic use. My pain is well under control now, and so,

consequently, is my mental state, but that doesn't change what happened..

People who are in constant agony do reach some pretty low points in their

lives. Fortunately, the majority of people are not in that situation, but

unfortunately, they also can't even imagine it, so for them, it musn't

exist. Hence, the denial, disbelief, and " chin-up " advice. Doesn't this

remind you of people who tell you " how good and healthy you look " when all

you want is for them to acknowledge that you have a serious disease and

sometimes do not feel well?

While we should all strive to be upbeat about the future because it's proven

that a positive outlook goes a long way towards good health, we need to also

acknowledge the " down " days and not be afraid to share them. This is one

of the few places I look to for comfort, understanding and support about PBC

because many of my friends just can't " see " my disease. Let's keep it a

safe haven for everyone.