Friday, October 1, 2010

You Are Not Alone

This is what I keep hearing, over and over again, "When I read your blog I don't feel so alone. No one in my life understands what this is like, but you do!". I have been getting outpourings of emotion as comments roll in, people finally stepping away from the misunderstood madness that is life with Fibromyalgia and pausing to take a breath in a safe place. A place where they will not be judged or condemned or given funny looks or doubting glances. Where no one is going to yell at them for being sick and not fulfilling their obligations in life. No one is going to tell them to get over it already, stop being lazy, its all in your head. A haven where people are not going to withdraw or take their concern and affection away as the months, years drain on, sucking the life out of the relationship. I know I have found a safe place with all of you, my readers, my Fibro-family! I have met some amazing people on this journey. Do you all realize it has only been 7 weeks since I "went live" with my blog? Yet I feel intimately acquainted with so many of you, such a deep connection of empathy and compassion and genuine concern. I am simply impressed with the fighting spirit and soft heart us Fibrates have. We truly are a special bunch!

I am still quite amazed that what I have to say is perceived as so interesting, garnering such a response from so many. But the reactions I am getting are real. People that are long suffering in silent misery because trying to get others to understand, the effort it takes to explain, well, it often takes more energy than we have to give! You can finally pause and take a deep breath and put down that shield of armor that you hide so carefully behind for a few moments and JUST BE YOU. Sad, depressed, strong, silly, slap-happy, grateful, sarcastic, confused, bewildered, shocked, angry, whatever YOU is at the moment, you can be it here. As this keeps growing, momentum keeps rolling us down the hill of inevitability, we are picking up more and more sufferers along the way, soon forming 1 big ball that can crush whatever stands in our way. We are growing, expanding, building our army! We need an awareness campaign that unifies us as 1 strong patient body, and I feel a calling to lead that cause. But I am just 1 small woman with my own issues to tend to, life to manage, health to take care of...

This is where YOU come in, my readers. I am working hard on defining the platform for our cause, and I need to hear from you! My first order of business is to construct the Fibromyalgia Patient's "Bill Of Rights And Responsibilities" and I need your feedback. I have placed an entry under the "notes" tab on my Facebook page and would love to hear from each and every one of you what you feel are your top 2 or 3 things necessary to surviving this illness. If you feel you are doing a miserable job of surviving I still need to hear from you, just let me know what your biggest challenges are! Please friend request me on Facebook if you are not already in the "Fibro-Fun House" and spread the word to your friends with Fibromyalgia to join the party!  Look forward to moving the reality of living with Fibromyalgia forward... Alone we can accomplish very little, united we can change the face of living with this illness!

Thanks for joining,


  1. I am new to Fibromyalgia (well newly diagnosed) and I have enjoyed reading your blog.

    I find reading blogs of people with Fibro a lot more helpful and informative than the "medical" info sheets out there. I have realised so many little things that I deal with are related to my Fibro, that no info sheet tells you.

    Look forward to sharing my journey with you.

  2. That's the beauty of our support of each other. Things that are so strange or confusing make a lot more sense when we find out others go through them too! Welcome aboard ;)

  3. Having M.E. has also opened up a new world to me Leah. Ironically it's the first time I have felt part of a community that means something! Being in touch with genuine people on facebook and through blogs has helped me gain better acceptance of myself and in turn confidence. I love to read your blogs...has it been only 7 weeks? xx

  4. Well I was blogging "privately" since March but no one read it, I did not give the site address out and was cautious about opening myself up to the world. Then I had the 2 strokes at the end of July and it opened my eyes and my heart and I "went live" and started posting daily and promoting it on Facebook...and it has taken off like a rocket! Blessings my friend ;)