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My simple idea for awareness day...

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Posted 5/11/2012 4:00 AM (GMT 0)
I sent this in a message to all those on Facebook who I know that have Fibro or are around it....

"So, since this Saturday is Fibromyalgia Awareness Day, I was kind of wondering what little difference we could make. So, I was thinking that on Saturday we could all post a note on here explaining what its like )in gruesome detail) dealing with this disease or being around/ helping/ knowing a person who has it. And I thought if we all titled it the same thing...it might have a bigger affect...Like "THE TRUTH about FIBROMYALGIA" or "THE NAKED TRUTH ON FIBRO" or something. What do you guys think?"

Kagendo
Posted 5/11/2012 4:04 AM (GMT 0)
i for one think it,s a great idea.it,s a shame only people who belong will see it.i wish the world could see or feel it.
49 yrs old and my life is over.
i never saw this coming.
god bless have a great night
kathy
Posted 5/11/2012 4:10 AM (GMT 0)
I know the feeling, Kathy, of your life being over. I am 23. But I will pray for you now...that some bit of comfort will come your way. =)
Posted 5/11/2012 4:19 AM (GMT 0)
I love the idea personally and think it will be a great way to shed light on how severe and how different each case can be with symptoms and what not. I am 22 and have had a heck of a time dealing with it for 3 years now. FMS can be litterally almost any uncomforting symptom you can think of, it's just a horrible thing to have and the fact they can't actually test for it through blood test or something like that is a big bummer because that makes a lot of doctors lack faith in what some refer to as just a myth. But we who suffer each day know it is very real and affects our way of living. I have accepted the fact I probably will not ever have a girlfriend due to my issues. I'm not a homosexual by any means, not that there is anything wrong with that, but each day is a battle to just get through and then when work is over I lay in bed....What a life for 22 and it started at 19 for me, so I've pretty much given up all hope of ever getting rid of my conditions. I've tried every meds you could possibly name and none really help. I believe a lot of it is genetic though, because both my grandparents have arthritis along with my back pain and my mom has arthritis and fms. My whole body hurts though, my hands, lower back, feet, neck, especially the back of my knees which I have bakers cyst that take the cake as far as pain. Being 22 and walking with a limp is ridiculous...I just feel like I have no quality of life at all. Anyways I absolutely feel like your idea is well needed to shed more light on this horrible chronic condition. I really hope more people post!!
Posted 5/11/2012 4:23 AM (GMT 0)
Oh dear. I feel your pain. And don't give up on the girlfriend thing...the man of my dreams came along, knowing how sick I was and married me last summer. There is always hope. But I encourage you, if you have a facebook or blog, to write as much as your fingers can handle on Saturday and tell the world. Remember the title, too. =) don't know if you beliebbe in God, but I will pray for you as well. =) hope you sleep well tonight.

Kagendo
Posted 5/11/2012 4:49 AM (GMT 0)
Great idea. I think we all should shout it from the rooftops to anyone who will listen - but first, we have to remember. I'm going to put a big fat note on my fridge right now!  idea

And Ouch, as Kagendo said, don't give up on your dreams!  You never know what will happen...

Thanks.. Debbie

Posted 5/11/2012 4:52 AM (GMT 0)
Haha! Thank God, for sticky notes, right? Don't know how in the world I would survive without them!
Posted 5/11/2012 1:08 PM (GMT 0)
I'm not on Facebook but I would be afraid it would make us all look like a bunch of crybabies!  Perhaps a mention of fibro and some official links explaining this illness...links from places like the Mayo Clinic.  You want people to be aware that this is a REAL illness and people with fibro are not making things up.  They've probably heard about all the pain and weird things but don't believe the person.  But an official site/sites sure could help.

 

Sherrine

Posted 5/11/2012 2:08 PM (GMT 0)
I agree that adding official sites would definitely be a good idea....to show what we are saying has some real proof and sciience about it. But I don't think we should feel like crybabies just for explaining what we go through. But that's just my opinion. =) Good idea about links!

Kagendo
Posted 5/11/2012 2:52 PM (GMT 0)
All good ideas. Official links always are.

And I agree that we shouldn't hesitate to describe our symptoms. The reality is, we have them, and the more we clam up due to fear of not being taken seriously, the more we won't be.

Debbie
Posted 5/11/2012 3:28 PM (GMT 0)
In an ideal world, all pain would be validated...there would be understanding doctors as well as families and friends. A med to help everyone would be great.

Fibro is gaining more recognition. One thing that is impossible is making others feel our pain. No one realizes others pain unless they have been through it themselves. Personally, I hate to think of others suffering. My family does not have to know about every ache or pain I feel...that does not make me feel any better. We all want understanding and it helps to communicate our needs. Showing we are strong by doing what we can do to help ourselves goes a long way. Yes, more people need to be educated on fibro and we can do our part by communicating without whining.

Living with chronic pain is indeed frustrating but it is so much easier to live with when it is not surrounded in negativity. Focusing on all the better things in life and being thankful for not being worse off has helped me.

My focus...my blessings, my faith, my hope...Each day I live and try to cope.

One day at a time....


Hugs, Robin
Posted 5/11/2012 5:40 PM (GMT 0)
I think I understand what you are saying, Robin. Im not a fan of whining but I am a fan of truth. And I know that I personally sugar coat too much. I think alot of us do because we aren't taken seriously so there's no point. I just thought it'd be a good idea to tell the world how serious our conditions are. Awareness is so important. But if you don't feel right about it then by all means, don't participate. We should only do what our conscience is okay with.

Kagendo
Posted 5/11/2012 5:51 PM (GMT 0)
I agree with Robin 100%.  Awareness/Education is crucial in elimintating the stigma of fibro...the 'waste basket' diagnosis so many of us have been treated to.  It took three years before I got a doctor to even say the word 'fibromyalgia'...I mainly got the Old Eye Roll.  But that as 20 years ago when the disease was just starting to be recognized and even then it was called a Syndrome.

On the other hand, I look at Robin's autograph and thank God everyday that I have a disease that is not life threatening, degenerative nor does it destroy organs or muscles, although it may feel like it does.  It was the happiest day of my life when I was told I had fibromyalgia and not ALS or MS, which is what I was tested for at least three times.

Here's to Awareness Day, but I personally do not intend to dwell on the pain...it only makes it worse for me.  I know others do not agree but that's what is great about this forum...

Huggies

Donna

Posted 5/11/2012 5:51 PM (GMT 0)
I am going to post something on FB too. Did you decide what slogan you're going to use?

Debbie
Posted 5/11/2012 6:02 PM (GMT 0)
"THE NAKED TRUTH about FIBROMYALGIA" =)
Posted 5/11/2012 9:43 PM (GMT 0)
I just changed my profile pic a few days ago, it just has a purple ribbon and explains that 5/12 is awareness day. I didnt put up any complaints about it, because I dont want people to think even worse of me being a baby.
Posted 5/11/2012 10:02 PM (GMT 0)
I bet you're as tough as nails dealing with all this!
Posted 5/11/2012 10:18 PM (GMT 0)
Tomorrow, I'll be having a party...a cookout- croquet party...all my friends know that I've got fibro and some other junk. They have witnessed good times and some that aren't so good. I hope they see me as just a fun loving person, having an identity beyond my diagnoses. When moving into this neighborhood, I explained my conditions so that people knew it wasn't always possible to accept invitations when I'm flaring. Awareness is wonderful :)

Hugs, Robin
Posted 5/11/2012 10:21 PM (GMT 0)
That's so great! Isn't it a load off that even though people can't understand completely they are sensitive and willing to work with you rather than judge? So encouraging to hear that!
Posted 5/11/2012 11:02 PM (GMT 0)
I want to clarify my statement.  I said giving all the "gruesome" details of what we go through could make us LOOK like crybabies.  Pain hurts.  We are trying to get people who don't understand this illness to do understand that this is a painful illness.  Well, has it really helped us when we tell people about this illness and what we go through?  I don't think so because we have post after post about how even our spouses don't understand.  So that's why I said you shouldn't start telling about all the aches, pains, etc. on Facebook.  People who don't understand this illness will think....."There they go again!"  They won't read it, I don't think. 

 

That's why I suggested instead to put up professional links about fibro.  People are not going to listen to us....but they might listen to the Mayo Clinic or other sites written by doctors.  Even the link in Fibro 101 called Doctors Respond to New York Times Article would be good.  I hope you see what I mean.  I'm not saying we are crybabies but to those who don't understand this illness will think we are.  I know I've had that happen more times than what I want to think about in my life.

 

Sherrine

Posted 5/12/2012 1:23 AM (GMT 0)
Yeah, I think we've definitely all gone through that more than we'd like to count. And I understand what you are saying, I think. And I plan to add medical sites to mine but I'm just not going to give up on making people aware that its not only a scientific thing but how it affects our lives personally, with relationships, with finances and with the pain, etc...even down to the spouses that don't understand. But I'm not trying to downplay your concerns at all. I suppose I just respectfully disagree. lol. =)

Kagendo
Posted 5/12/2012 11:03 AM (GMT 0)
Happy Fibro Awareness Day...

Hugs...
Posted 5/12/2012 2:53 PM (GMT 0)
How about giving a link to our fibromyalgia forum.  People could really see what is going on with this illness and learn a lot, too.

 

Sherrine

Posted 5/12/2012 3:18 PM (GMT 0)
Oo! Really good idea!
Posted 5/13/2012 1:27 AM (GMT 0)
I am a Facebooker and they have a few FMS Groups on there. Such as Fibro TV, Fibromyalgia Network. I have found just from my posting all about FMS that many of my friends that I didn't know they're living with the disease too. Many people welcome the info, that they may undertand the illness to deal with their family and friends with it. i think it is a very good idea, Kgendo!!!
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