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A Few Do's & Don'ts When Dealing With Someone With Chiari
Hi Everyone!
I'm pasting this list of do's and don'ts I found on a ACM facebook group page. They say everything I have been trying to express to all my family and friends recently especially when it comes to the activities part.
Andrea
A FEW 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.
I'm pasting this list of do's and don'ts I found on a ACM facebook group page. They say everything I have been trying to express to all my family and friends recently especially when it comes to the activities part.
Andrea
A FEW 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.
I'm very glad this has been useful to everyone! I'm trying to figure out a tactful way to give this to my district sales manager because he seems to forget I have chiari...as do most of the people in my life. Not to sound like a big whiny baby, but I feel like everyone has forgotten I have limitations and it brings me down.... :-(
I am SOOOOO Glad I came across your post. I need to share with it my husband and daughters. I went to the Neurologist this afternoon and he stated that having Chiari and the syrinx is "no big deal" he told my husband and I that SO many people have this and it don't even know it. I went to him for an evaluation of my headache/neck pressure and pain, dizziness and fatigue. He "suggested" that I had anxiety and prescribed Activan along with Ultram for the Pain. He said that I need Physical Therapy to strenghten my neck muscles since I also have some alignment problems as well as some herniated discs in my neck.
He told me that since the syrinx's did not get larger since the 2006 MRI, I should just forget about it and not repeat the MRI for 5 years.
Now that I am thinking about the office visit (whicle experiencing a terrible episode of the headache and neck and throat pressure) I AM having anxiety!
I aslo feel like now my family will look at me and think..oh, it's just a muscle spasm.
Any comments will be very much appreciated.
He told me that since the syrinx's did not get larger since the 2006 MRI, I should just forget about it and not repeat the MRI for 5 years.
Now that I am thinking about the office visit (whicle experiencing a terrible episode of the headache and neck and throat pressure) I AM having anxiety!
I aslo feel like now my family will look at me and think..oh, it's just a muscle spasm.
Any comments will be very much appreciated.
I'm adding this to my facebook page as well. My family and friends don't understand why, if I came to visit one evening, I cannot go shopping with them the next day. Also, since my 2nd surgery was over 2 months ago, they think I should be better by now. I try to explain that recovery time for all surgeries is not 6 weeks. Maybe now, they will understand.
How well put nobody should assume or think they know how we feel, each of us are individuals with our own unique take on this debilitating condition. as each new day there a new condition. bless all of you who have to live chiari as well as our families, may they come to try and understand.
suzanne
suzanne
COMMUNITY LEADER
Another good item to turn into a Health Page as a reference .
Thanks for sharing.
"selma"
Thanks for sharing.
"selma"
this is wonderful! I'm going to post this on my facebook for all my family and friends.. thank you so much!
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