DON'T TELL ME!!!

This was written because of people with Chiari Malformation and Syringolmiallia which there is NO CURE for only brain surgies as treatment. So If one of us seem fine one day and not the next we aren't faking it so cut us come credit we already feel alon

                                            DON’T TELL ME!!!!!!!!!!!!                   
Current mood:  annoyed

                           

 

DO'S & DON'TS WHEN DEALING WITH SOMEONE WITH CHIARI

DON'T ASSUME BECAUSE I LOOK WELL THAT I FEEL WELL. LOOKS CAN BE VERY
DECEIVING. MANY DAYS I LOOK GREAT, BUT I FEEL TERRIBLE.

DON'T TELL ME YOU KNOW HOW I FEEL. NO ONE KNOWS HOW ANYONE ELSE FEELS.
TWO PEOPLE WITH THE SAME DISEASE MAY FEEL TOTALLY DIFFERENT.

WE ALL HAVE VARYING THRESHOLDS OF PAIN AND PAIN CANNOT BE MEASURED.

DON'T TELL ME ABOUT YOUR AUNT GERTRUDE AND HER CHIARI AND HOW WELL SHE
MANAGED IN SPITE OF IT. I AM NOT AUNT GERTRUDE AND I AM DOING MY BEST.

DON'T TELL ME, "IT COULD BE WORSE." YES, IT COULD BE, BUT I DON'T NEED
TO BE REMINDED.

DON'T DECIDE WHAT I AM CAPABLE OF DOING. ALLOW ME TO DECIDE WHAT
ACTIVITIES I CAN PARTICIPATE IN. THERE MAY BE TIMES I MAKE THE WRONG
DECISION, AND IF I DO, I'LL KNOW IT SOON ENOUGH.

DON'T BE UPSET THAT YOU CANNOT EASE MY PROBLEMS. IT WON'T DO ANY GOOD
FOR BOTH OF US TO BE MISERABLE.

DON'T ASK ME HOW I FEEL UNLESS YOU REALLY WANT TO KNOW. YOU MAY HEAR A
LOT MORE THAN YOU ARE PREPARED TO LISTEN TO.

DON'T ASSUME BECAUSE I DID A CERTAIN ACTIVITY YESTERDAY THAT I CAN DO
IT TODAY. CHIARI IS EVER-CHANGING.

DO LEARN EVERYTHING YOU CAN ABOUT THE DISEASE. THE MORE YOU KNOW, THE
BETTER EQUIPPED YOU WILL BE TO KNOW WHAT TO EXPECT.

DO REALIZE I AM ANGRY AND FRUSTRATED WITH THE DISEASE, NOT WITH YOU.

DO LET ME KNOW YOU ARE AVAILABLE TO HELP ME WHEN I ASK. I'LL BE
GRATEFUL.

DO OFFER ME LOTS OF HUGS AND ENCOURAGEMENT.

DO UNDERSTAND WHY I CANCEL PLANS AT THE LAST MINUTE. I NEVER KNOW FROM
ONE DAY TO THE NEXT HOW I WILL FEEL.CHIARI IS LIKE THAT.

DO CONTINUE TO INVITE ME TO ALL THE ACTIVITIES. JUST BECAUSE I AM NOT
ABLE TO BIKE RIDE ALONG WITH THE GANG DOES NOT MEAN I CAN'T MEET YOU
FOR
THE PICNIC AT THE END OF THE TRAIL. PLEASE LET ME DECIDE

Reviews

[Heath Payton]

DON'T TELL ME I don't understand, becuase I am learing each day. :)
I really liked this one. Makes me SO proud to see you stand up and tell everyone off.
Like "That's my girl, you tell them!"
They have no idea and even though I do not know it all, baby I try each day.