"My Neurosurgeon Removed My ~ Give-A-Damn Filter"

~ 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, "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  & IH ARE 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 & IH ARE 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