Thursday, January 5, 2012

Just Because I Am Having A Lilac Day Does Not Mean Fibromyalgia Has Gone Away

I have a serious problem. It is my good days. The ones I work so hard to have by getting my rest, managing my stress, eating nutritious food and all the other rules I must follow to avoid flares as best I can. In the past it was me, all me. I would have a lilac* day and jump up and run around in a frenzy trying to get caught up on everything psychotically pecking at my psyche I had been too sick to do. Then I would be sick again. I did that about 75,000 times before we met half way. My body resumed a degree of functionality and I developed an ability to look at disarray and leave it alone.

My problem now is expectation. If I am not bitching and moaning about my sacroiliac all jammed up or the pinched nerve at the top of my convex spinal cord causing my right hand to lose the ability to grip, shingles or an Epstein-Barr flare, then it is assumed I am just fine and dandy as can be. Not sick anymore. Why would I not jump up at the chance to join the land of the normals? Go shopping or to dinner, girls night out or a spontaneous movie? BECAUSE THE REASON I AM NOT IN A FLARE IS BECAUSE I DON’T DO THOSE THINGS!

Sigh. How on earth does one communicate this? How do I tell my friends and family, even at my best I cannot keep up with them at their worst? That my life is carefully managed so I don’t throb with every heartbeat in body-wracked pain and I simply don’t have room? That pretty much they have to accept me on my terms or not at all? Oh this is hard. Oh so hard. Getting Fibromyalgia managed was a nightmare. Living with managed Fibromyalgia is worlds better but still comes with it’s own complications and challenges. But ever forward we must go…pushing for progress, recognition and acceptance. We crusade because we have to, for we simply must find a way to exist on this earth without this illness eternally ripping us apart.

Thanks for joining,


  1. I like the codes that's cute. I am having a mulberry day. I have a cane today and pain but I'm at work.

    I completely understand people who look at me and say oh no cane today so you must be doing better and your all fixed. Um no - diseases do not go away. :)

  2. Thank you for this post. I've had a few lilac days in a row (amazing!) but have been going mad with chores around the house....even though I know it's going to bite me on the behind!

  3. I totally understand! My family (other than my mother) would immediately do the same thing. It is frustrating! I have more even days than bad days because, like you, I do not go overboard with overdoing it.

    I hope your New Year is starting off well!


  4. Love the post.....I totally understand is battle. And it is a battle, either with yourself because you have to make yourself not over do it on good days or you have to battle others misconceptions about how you feel. I work Tuesday through Friday and my job basically just involves sitting around most of the day but by the end of the week I am exhausted. It takes everything I have to make it through those four days and then I need Saturday through Monday to recuperate for the next work week. Unfortunately those close to me want to go and run errands and do stuff on Saturdays. They just don't understand that I can't do a fraction of what they do and I have have to battle with myself not to go out and over do it. Oh the joys of fibro.

  5. I am the husband of a beautiful woman who has found herself bludgeoned by this malady. I am forwarding your blog to her. I believe she will benefit from another "under the curse," who is endeavoring to confront it head on.

    I hear her voice in your words. She is in the manage this thing challenge right now. I know she will have victory, but I hope she will be encouraged by what you share.