Saturday, April 9, 2011

No Man's Land

I feel that I am existing between forces right now. I am in a huge vacancy, a big void. The frenzy of 6 months on high-dose steroids is behind me. In the wake of that wild ride I am left with a beautiful support page on Facebook for over 2,000 amazing people touched by Fibromyalgia. I have a large readership on an entirely unadvertised blog and the makings of an incredible patient-united awareness campaign sewn up. Yet I am extremely unmotivated about where to go next, and am very unhappy with the quality of life I have negotiated myself into. There is so much good that has come out of my strokes. But without the Prednisone, I don't have the energy to keep propelling it forward at the same pace. Hell, I am struggling just keeping myself together, and am doing a pretty shoddy job of keeping up appearances!

Somehow I have bargained myself into bed for 2 days. I get up only to eat or use the restroom. I am not cooking, cleaning, exercising, doing anything really to better myself. Yes there are 30 thousand excuses why, but only 1 reality that exists in what I have not done. And this is the curse of the type A getting Fibromyalgia. What is actually health management and what is just me being lazy?  What is the difference between pacing and simply I don't want to? I am not in writhing pain, am not overwhelmingly fatigued, not fogged to Cape Cod. I could look at this as a rest, a reprieve after a really big storm. Time needed to heal and re-group and regain some perspective. Or I can beat myself up for not meeting the standards I know I need to live happily in. Not committing to myself every day a hard-core faithful schedule, certain designated times for each activity religiously executed day after day.

With a me like me who needs enemies?  Sheesh, is it possible to be any harder on me? I am exhausted! I feel like 6 months on high-dose steroids was an illness in and of itself. I feel my brain and heart and soul are just settling down from the shock they went through. My marriage is just getting back on track. My husband is laughing again, planning hopes and dreams for the future. The Fibromyalgia Crusade and Fun House have grown so quickly! But then I get mad at myself for not advancing my health, my standards, my campaign with vigorous energy every day! For that is my future. Then I chastise me for being so hard on me!  And I can spend the rest of my life in this balance, beating myself up for every imperfection, then excusing my next obligation away with unmotivation.  But while part of me says Rest up, you have been through a lot and deserve it there is also a bluebird sitting on the other shoulder chirping quite loudly Get up off your ass and live your life. You have been through a lot and don't have a minuet to spare!  I suppose every yin needs its yang, hot needs its cold, spicy needs its sweet. I am leveling out from months on the balance, teter-tottering at every bump or bruise. But these oppositional forces inside of me are driving me crazy and I have to come to terms with them soon. I think I will go have some frozen yogurt and watch a little TV in the meantime. This day is almost over, why upset the balance now?

Thanks for joining,

1 comment:

  1. I feel like you are writing my life story! I read this and I know exactly how you're feeling. If it weren't for the need to care for my granddaughter I don't think I'd ever leave the comfort and safety of my bed. I've been on high doses and maintenance doses of prednisone for nearly 20 years and it is like a roller coaster ride. There's no way I can maintain the same level of activity while on prednisone and not on it. Don't beat yourself up. It's been a hard 6 months for you. I know when I first began prednisone, it was very little sleep, lots of manic activity and then the eventual crash. Be nice to yourself. It takes a long time to get it completely out of your system and with the fibro it has to be much harder. I love reading your blogs. It makes me feel less isolated and alone. Thank you for sharing your story and giving us a place to vent and share.