Monday, December 20, 2010

Who Holds Your Power?

"I feel awful. I have anxiety and am bored and stressed out and have so much to do I do not even know where to start. I am melancholy and complacent and restless and down. Depressed. Indifferent. I am so sick of so much emotion. So much up and down. One moment it is this...the next moment it is that. This person has a problem, then that one over there has a bigger one... I am sick of drama and feeling and anxiousness and the never ending up and down of it all. I would rather feel nothing than this constant flux."

I wrote that yesterday afternoon, when I was kinda coming undone. The NY Giants lost their game in the most ridiculous fashion I have ever seen and my husband was pouting and storming around, all in a tizzy. He finally calmed down enough to ask me how I was doing and my answer was to read the above statement to him. He agreed he felt the exact same way. I said fine, then let's do something about this because we have too much goodness in our lives and are wasting it on indulging our whims like little children with no self control. We have been through a lot these last 5 years (since I got sick) and are road weary, exhausted, spent and on the verge...and no one (who has not been there) really understands. It is so frustrating to call up a good friend or close family member and when you honestly tell them you are not doing well they say with shock and surprise "OH NO, WHAT'S WRONG?". Oh it just makes you wanna hit 'em, eh? I HAVE FIBROMYALGIA, that's what is wrong! The most menial and basic tasks are monumental to me! I cannot live in the pain I am in, with the limitations I have, and the foggy cloud over my brain, and have a good quality life! That's what's wrong!

That is the precise reason why The Fibromyalgia Fun House and this blog have become so important to me. I have an entire community of friends that understand! Intimate, first hand knowledge of how hard life is with Fibro and whatever other myriad of illnesses we all seem to have. And with our Purple Pain Code it makes it all that much easier! With one word I can communicate to you all how I am feeling and you get it. No pathetic attempts at explaining, no struggling to put words to feelings others cannot possibly comprehend as they skate along with their healthy little lives. I am grateful to you all, my readers, my friends. You have given me so much. But we are heading into a particularly hard week, one where a frenzy of things need to be done. Many of us will doubtlessly gather together with family and the struggle normal activity is to us will become apparent to them. And many will put in their wonderful 2 cents of ignorance about how YOU can fix it or it is not real or you are faking or being dramatic or whatever other wonderful judgment will be passed. So we are going to spend the first few days of this week arming ourselves up to change the reality of this experience.

1. Honestly assess EVERYTHING you have to get done between now and Thursday night. Make a list, starting with the most important and ending with the least. Do your best, pace yourself, but if you follow this the worst that will happen is little and insignificant things will not get done, and that is not that big of a deal.
2. Start practicing and preparing how you are going to respond to inquiries, judgments and jabs about your health. Stand strong in the collective power of your community, The Fibromyalgia Crusade, and come up with ways to keep your power and put the doubt back on the doubter! We will be working on this all week...
3. Remember this is your holiday too and try and have fun.

What my husband and I decided at the end of our conversation yesterday was that we are going to stop burying ourselves in the "should's" of life. When something comes to mind that we need to do but are not, we have 2 options. We can either do it or forget about it. We are not allowed to turn it into an anxiety producing experience that sucks our energy and turns our mood sour. Now wish us luck... Blessings to you all, happy holidays and stay connected, because by Friday we are going to unleash a POWERFUL group of Fibrates on the world that are going to enjoy their holiday!

Thanks for joining,


  1. I am so glad I have read about your pain, as I feel like I am not alone in my suffering. I have a reasonably good Dr, but it's so hard to explain to people why I look OK and feel like crap.Why I sleep alot, cry for no reasons, limp, cant bend down etc. Every morning is a new painful discovery for me, so I am trying to reach out to others to learn more and help myself. Starting my own blog as a diary hopefully will help, and I hope to meet others with the same infliction as I have.

  2. Thank you for sharing Leah! This is EXACTLY how I've been feeling lately. So much up and down, trying to hold it together, feeling guilty for not being the old me. Your blog is such encouragement!

  3. I am so very glad that I have found your blog...finally, someone who gets it!! I am truly blessed with a husband who takes such good care of me and without him I don't know what I would be like. I am fairly new to Fibro and am learning how to handle situations. But I admit it is so hard at times to put a smile on and act like I am ok! Bless you for all you do for all of us, you are amazing!!

  4. Thank you, sincerely, for your heartfelt compliments! Glad to have you on board ;)

  5. I won't should on you if you won't should on me.

  6. Great post my dear. I have learned to "let go". It took 3 years and losing everything I had (my movers stole everything) but we are in Maui right now and that is more than enough for this Christmas holiday. I did very little to no gift buying and am just enjoying the holiday with no stress. That is a completely new paradigm for me. I swam in the warm ocean today, that was a milestone and felt good.
    Happy holidays to all my fellow fibro friends. May you experience peace and joy.