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gilesgirl

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01/2004
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My friend gave me this to print out and give to people thought I would share it with you

Hello Family, Friends, and Anyone Wishing to Know Me!

How do I explain this to you my family and friends? This is very difficult to do as my illness is "unseen." So allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person's time is their most valuable asset and yours is appreciated.

The attached document contains the remainder of this help file - feel free to print and distribute the attached PDF.
 
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1sweed

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DX FIBRO
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01/1995
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Thank you so much for sharing this as a way to inform friends and relatives about Fibromyalgia. It is so hard to tell others about without sounding like your complaining all the time. Lots of people think it is better to keep it all in and not tell others about health concerns or problems. I think it is sort of old-fashioned thinking, for in many cases by not speaking up people will judge you just on looks without knowing the suffering going on in our muscles and body. This article helped explain that even though fibro is unseen on the outside, it exists on the inside, and is not made-up, nor is the person faking it or lazy. It shows this person had the courage to say something in her own unique way.
 

BrendaMarie

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10/2001
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US
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This is good. The example that I oftentimes use is the "spoons theory." I tell them I'm only given so many spoons to use each day and when they're gone, I can't do anything more. Sometimes I'll even give someone a few spoons and let them say what they'd do with each spoon. That really helps drive the point home.
 

Lilly-mae

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Feb 10, 2013
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09/2011
Country
UK
State
Cornwall
Hi, i have problems with people not understanding what its like to have an "invisable illness". They all think that im lazy, faking/making it up and cant be bothered to do anything but all i wanna do is scream so loud 'that it has nothing to do with not being albe to do stuff other people can do'.
Sometimes when i tell them what i got and how it affects me, their like 'oh that not good', 'ur so young to be sick' or 'wish i could help do summit', and that makes me wanna shout at them and go lock myself in my room. I guess that we all have to cope with the fact that people u know or stangers just cant really understand conpetely whats going on cause they have nothing wrong at all.
 

twiztc

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Feb 3, 2013
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08/2000
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CA
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I remember reading about the spoon in another place about a year ago.... Brilliant. It's describes very well anyone with our types of conditions if you are lucky you might find yourself with an extra spoon. Use it wisely.
 

BrendaMarie

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I have a problem thinking of this as the only "invisible illness" though. I mean, if you think about it, aren't most illnesses "invisible?" There's not always outward signs of issues like if you had cancer and lost your hair. Am I over-thinking this though?

Twiztc... I keep hoping for an extra spoon! LOL
 

twiztc

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At least the hoping doesn't cost any spoons! Ahhhh..... dream the dream :)
 

BrendaMarie

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10/2001
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US
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Pennsylvania
I keep thinking back to how healthy I used to be. Now there's days I'm in bed right after dinner. I used to go on long nature hikes, jump off of roofs while working for Habitat for Humanity and run shifts as a restaurant manager. Now I'm on the couch most of the day, homeschooling my daughter or writing. I enjoy my life still but oh for those athletic years. If I knew then what I know now, I might have enjoyed them even more LOL
 

Michelle2

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Feb 18, 2013
Messages
31
Diagnosis
06/2011
Country
CA
State
ON
Thank you for sharing this very well written attachment. If I am brave enough I may just send it to a few family members who do not have a clue as to what is going on with me.
Michelle
 

Janet L

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Jan 17, 2013
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lol Michelle, let us know what they think of it. I'm always a surprised by some family members reaction (in a good way), and often completely surprised by others reaction (in the most awful way) :)
 

Jowjo5

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Feb 21, 2013
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00/0000
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usa
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Nh
Thanks for posting that. I came to this site because I have a sister who has been diagnosed with this. I want to learn more about it so I can understand how I can help her and what I should know about this health issue.

I really don't have much knowledge about this and that was an excellent start for me.

Thanks so much.
 

Janet L

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Messages
132
Diagnosis
12/2012
Country
US
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Texas
Hi Jowjo, welcome to the forum. I think it's wonderful that you've taken the time to not only educate yourself, but join a forum so you can ask questions. Your sister is very lucky :)
 

BrendaMarie

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Feb 16, 2013
Messages
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Diagnosis
10/2001
Country
US
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Pennsylvania
I agree... It's awesome that you're trying to learn more in order to help your sister. Just remember that everyone deals with fibro differently so while 1 person may have certain symptoms, another person may have a whole other set of symptoms. For this reason, you'll also need to keep the lines of communication open with your sister so that you know what she is specifically dealing with.
 
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