Do's and Dont's when dealing with someone with fibromyalgia

DON'T ASSUME BECAUSE I LOOK WELL THAT I FEEL WELL. LOOKS CAN BE DECIEVING. SOME DAYS I LOOK WELL BUT FEEL TERRIBLE.

DON'T TELL ME YOU KNOW HOW I FEEL IF YOU DONT HAVE FIBRO> I KNOW YOU MEAN WELL BUT REALLY, YOU HAVE NO IDEA.

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

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

DON'T DECIDE WHAT I AM CAPABLE OF DOING. ALLOW ME TO DECIDE WHAT ACTIVITIES I CAN PARTICIOATE IN. THERE MAY BE TIMES THAT I MAKE THE WRONG DECISION AND IF I DO MY BODY WILL SOON LET ME KNOW!

DON'T ASSUME JUST BECAUSE I DID A CERTAIN ACTIVITY YESTERDAY THAT I CAN DO IT AGAIN TODAY-FIBRO IS LIKE THAT...ITS EVER CHANGING.

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

DO REALIZE I AM ANGRY AND FRUSTRATED WITH FIBRO-NOT YOU.

DO LET ME KNOW YOU ARE AVAILABLE TO HELP ME WHENEVER I ASK, I WILL BE ETERNALLY GRATEFUL.

DO OFFER ME LOTS OF GENTLE HUGS AND SUPPORT.

DO UNDERSTAND WHY I CANCEL PLANS AT THE LAST MINUTE. I NEVER KNOW HOW IM GOING TO FEEL FROM ONE HOUR TO THE NEXT-FIBRO IS LIKE THAT AND ITS NOT MY FAULT AND IM NOT BEING RUDE.

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

6 Replies

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  • how very true...:)

  • dont treat me as an idiot, my brains in there somewhere[that might be a good one to add]

  • hi thats is soooo good i am printing that out love diddle x

  • Lally, how true.....will add that one, Jules, im very sorry and will write it out in lower case letters for you if thats easier and last but certainly not least Diddle....for me it explains how i feel and i gave my family a print out of this in the hope of making them see thats how my life is and i hope its helped them to understand fibro just a little bit more...if its helped them in any way then its done its job..much love to you x

  • Brill letter I have sent this to members of my family and friends.

  • I have copied it out it is a really good way of telling it like it is ty hugs xx

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