Say What?

#NHBPM #HAWMC Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?


Fibromyalgia is not a real illness. It's all in your head. You don't look sick therefore you cannot be sick. You just want an excuse to lay around in bed all day, do nothing and get paid for it. You're just an attention seeker. 


There is no blood or other test for Fibro as there is for RA, Lupus and other diseases so that makes it even more difficult for people to believe that it even exists, unless of course you are the one afflicted. I never liked being the center of attention and believe me being sick is no fun - having Fibromyalgia is No joy ride and is NOT the way I would go about getting anyone's attention. 
If there is no test for it how do you know you actually have Fibro? This is one of the hardest things to get across to those who just may never "get it" about our illness. 


To be diagnosed with fibromyalgia, you must have had at least 3 months of widespread pain, and pain and tenderness in at least 11 of 18 areas, including:
Arms (elbows), buttocks,chest,knees,lower back,neck,ribcage,shoulders, and thighs.


Another really ignorant statement is that we are just lazy, want to sleep all day and get paid for it (collect disability) 
Some of those diagnosed with Fibro are unable to work and therefore do collect Disability. On our good days we can volunteer however we never know from one day to the next if it will be a good day or bad day. Pain levels are varied and meds help yet none of us want this and we sure did not ask for it. 
The truth is that we really do Not enjoy spending our days in bed, or even unable to work doing those things we once enjoyed so much. Make plans for next month? HA! Making plans for the next day is out of the question quite often.
Our activities are altered moment by moment, day to day depending on how we feel. 
I have a buddy, my walking stick, a cane. I use that from time to time to help steady me when necessary. When the pain and battle fatigue is so bad I cannot hold my head up then I spend as long as my body needs to in bed regenerating. 
It really really helps when you have doctors who believe you when you tell them how you feel, what is happening with Your body And for them to Believe you. 
The days I need my cane I have to push pride to the curb and utilize it when necessary.
I am in a place in my life where I can be an active advocate and activist for others who have been newly diagnosed and for those who are their supporters. 
Today, Thanks to a sister #spoonie I can share her theory with others and that does help them understand in part, what we go through, what we have Is real, we are in pain, have a real condition...Even though Christine Miserando has Lupus her SPOON THEORY can apply to all of us with "Invisible Illnesses" and I thank her tremendously!
Peace, Love and Light


This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J