Bloggers Unite for Fibromyalgia Awareness Day
Today I celebrated Fibromyalgia Awareness Day by attending a luncheon with members of my Fibromyalgia support group. As always, it was fun and restorative to spend the afternoon with others who understand. There is never a hesitation if someone stops speaking mid sentence because they lost their train of thought, or if you have to get up and walk around after sitting for 15 minutes. We understand and can laugh about the uglyness of Fibromyalgia, because when we are together we are not alone in our struggles.
I started a discussion by asking how I could encourage some of our members who never come out to attend a meeting. I’m not sure if we ever answered that question, but we all agreed that Fibromyalgia and chronic illness can be very isolating if you let it. I have many thoughts on the issue, but the one I want to focus on here is how fortunate we are in this day and age because of the internet. There are huge communities of people online making connections they never would have were it not for their computers. So today, on Fibromyalgia Awareness Day, I thought it would be fun to share with you how some of my fellow bloggers acknowledged the significance of the day on their blogs.
Time thief posted a great educational article on Fibromyalgia at this time – this space. Very well done!
Over at Chronic Babe the Editrix is asking her readers today “Are you well-read? Well-informed? Do you keep up on research? Read the latest journals?” And if you answer no to any of those questions she steers you in the right direction with information, suggestions and resources.
Michelle at Rhetoric Aesthetic reflects on her own anniversary with FM “in hopes of raising awareness, overcoming stereotypes, and celebrating the good that has come.”
Living It, Loving It reminds us this year’s theme is “Fibromyalgia Affects Everyone” and the goal this year is to emphasize the sweeping effects of the disease. She also has a great list of resources to check out.
The retro housewife shares how Fibromyalgia turned her into the person she is today – brave, strong and GREEN. Learn how she became an environmentalist to help eliminate the toxic chemicals that many believe cause/contribute to Fibromyalgia.
In honor of Fibromyalgia Awareness Day, Fab Fibro Friends decided to blog about her life with fibro.
Sheri at Prospering Over Fibromyalgia lit a candle for us all and asked that we pass it on.
Life as We Know It wants everyone to understand chronic fatigue syndrome is a physical, not psychological condition.
Fibro Helper Gin has a tea schedule where she plans to dispel the myth that “all Fibromyalgia patients are fat, white, American suburban housewives looking for attention.”
Sherril put together a great catalog of various events going on today and Fibromyalgia resources in general. Check it out at The ICI Experience.
Rochelle uses Fibromyalgia Awareness Day as a platform to share her personal Fibromyalgia story on her blog Learning to Trust.
The above is just a small sampling of what is out there. I would LOVE it if you have a blogger you would like to add to this list. Just leave a link to your/her/his blog in the comments section.
Excellent!
Thank you for this post, great links to ppl I haven’t met yet
I feel like a goof for sleeping all Awareness Day myself, but it’s kind of appropriate in a way, that this illness would take me out of commission on the day I’m supposed to be focusing on it most. Happy Awareness Day to you and all your readers and great big non-painful hugs 
Great post! Thank you so much for participating in Bloggers Unite Fibromyalgia Awareness Day!
Okay, I’m gonna grump all over this one. “Isolating if you let it”. I didn’t let it…it dragged me away from my life and I was kicking and screaming the whole way (ask my husband!).
I did not LET myself get isolated…my “friends” did not understand why my body quit and my brain departed and they, almost to the last one, bailed on me. Thank goodness for the Internet. I am much less isolated now, but still not enough face time to suit me.
Invisible Chronic Illness is isolating in and of itself. There’s no “letting” about it. If this “Awareness Day” accomplishes anything I hope it instills a bit of compassion and possibly some empathy in people like my former friends so no one else “lets” themselves be isolated.
Grump over. It’s a bathrobe day
lousy excuse. I may regret spouting off like that…but you hit a bit of a sore spot. Sorry.
By the way…I love seeing something new every time I check out your blog! No pressure to keep grinding away of course…
Thanks so much for linking to my post. I have suffered with this disease for over 20 years and learned how to rise above the pain. I hope the information in it will be valuable to others who suffer with fibromyalgia. And I also send out my best wishes to all the others who are likewise suffering with it.
That was very eloquent FH (now how’s that for a nickname?). Thank you for “letting” me have my temper tantrum and turning it into a teaching moment.
I do see myself in what you wrote, but I also see a lot of hope for the future… I got beat down pretty hard by the collision between my past life and fibromyalgia. Most of the time I feel like I’ve gotten over it and moved on, but obviously I still have some sore spots. Ouch.
I think I am moving towards a brighter and less isolated future. Not many people get a “do over” like this…
And I guess I have some researching to do. Thanks!
Dear FH,
So glad to have found you, and thank you for linking to my post.
I think your post and the resulting comments are excellent! It gives me food for thought on how to communicate with my support group and encourage them to come out for meetings and events.
Thank you!
Sleep is good. Get it when you can. Wait – isn’t that what they say to new moms? Works for us too!
Some of these bloggers were new for me too which is cool. Plus there are a lot of bloggers that did nothing specific for the day so I didn’t include them. This list could have been REALLY long!
Thank you for organizing it Michelle. Well done!
Grump away Kathy. That is what this space is for and you are certainly entitled. Besides, how boring would it be if everyone agreed with me all the time?
You are right, there is so much about Fibromyalgia that is depleting and that is out of our control. A lot of loss and adjustment to loss comes with it. But your argument changes the context of the point I was making when I said “isolating if you let it.” Yes, FM changes our lives dramatically, and we do lose a certain amount of control, but let me use my support group members to explain what I meant. We all still have the ability to make choices. FM did not strip us of that.
I have 53 members in my group. I do not advertise the group. You would have to take the time to research to find it. Then once you have put forth that effort, you will have to take the time to fill out a profile and submit it to me for approval (I do this to protect the privacy and integrity of the group. You would not believe how many marketers think it is okay to JOIN a group for people with chronic illness just to sell their product).
My point is that you really have to be ready to find support and connect with others with FM to join my group. So why go to all that trouble and then stop there? At some point you have to decide to attend a meeting. At some point you have to honor the commitment you made to yourself to connect with others like you and show up.
Each of us at the luncheon on Tuesday could have used Fibromyalgia as a reason to stay home. None of us felt great that day, but we made the choice to attend. We did not LET our Fibromyalgia symptoms stop us from what turned out to be a very fun and cathartic afternoon.
This is the dilemma I face with many of my members. They call and e-mail me with all sorts of intentions – they plan to come to the next meeting, they want to come to the next meeting, but they do not know how to break out of the pattern of isolation they have grown comfortable with. It is safe to stay home. Going out to meet a room full of people they don’t know feels like a risk. Fibromyalgia is extremely depleting, but it does not take away our ability to make choices. Even if it is just to spend a few minutes on an online chat room. We need to not give in to the isolation.
The more isolated someone is, the more they feel like they are the only one feeling so bad, the only one who has lost so much, the only one who understands.
At each meeting, over and over again I see the faces of my members light up as they chat with someone and realize that a symptom or frustration is shared with the other member. I am telling you, these meetings are never sad or depressing. It is more like a bunch of scientist making new and exciting discoveries. The sound of laughter is a constant at the meetings. Who couldn’t benefit from that?
So when I said “isolating if you let it,” that is what I had in mind. FM may limit our choices, but it does not eliminate them. Every day we have the opportunity to make many choices that can affect and improve our lives, and to a certain degree, remaining isolated is a choice.
P.S. Please do not regret spouting off. You made the choice to speak up and state your mind. I say good for you! It would have been easy to read what I wrote and get frustrated, but not leave a comment. Instead you broke the barrier and started a dialog. Very healthy and non-isolating of you!
Plus it gave me something to think about. Word choice is very important and something I should consider when writing my posts – so thanks!
No research necessary. You are in!
When I read that you feel hope for the future, it makes me feel hope! There are no quick and easy answerers with FM, we are all pioneers really if you think about it. Not that long ago diseases like MS & arthritis were exactly where FM is today.
The key is to come together on our quest for wellness. Whether it is in person or online, we need to build and strengthen the FM community, first and foremost so that no one feels alone in their struggles. There will be days when we cannot participate, but if we let those days turn into weeks, weeks can turn into months… Somewhere in that isolation hope will be lost. I want everyone with FM to have hope!
Thanks so much for starting this conversation! You have inspired me and I plan to share our dialog in a blog post.