Chronic Lyme Disease Summit 2

Fibromyalgia at play

Staying active when living with fibromyalgia is a necessary challenge. If you rest, you rust, like the old saying goes. And I think that's true when it comes to fibromyalgia. Something is off-kilter in our central nervous system, and that produces exaggerated responses to things that would otherwise not be painful to a person without fibromyalgia.

Sometimes, there's nothing to respond to, the pain is just there and nobody knows how it was caused. Sitting still is the logical response, intelluctually speaking. If I just don't exercise, maybe I won't cause any pain and I'll feel better. But the exact opposite is true. If you do not stay active, you will be in even worse pain. Believe me, I have done both, and it's far better to stay active than it is to become immobilized.

This section of Fibro Works is devoted to once-active women with fibromyalgia who want to get back their active lives, or those who are still active but may be having trouble modifying their lifestyle to accommodate fibromyalgia's impact.

 Accounting 101 Time for your accounting lesson. Each fibromyte has to learn her own energy “accounting system”. This will take a few weeks or months for you to establish, but once it’s established it is possible to keep the balance stabilized, and even to make a deposit once in a while. I’m deliberately trying to be “flip” here, by referring to our energy levels in banking or accounting terms. But it’s very simple really, to understand it in this fashion. Think of it as a cash drawer, or a jar of pennies. You have 24 hours, but less than 24 pennies or Dollars. Eight hours are devoted to sleep, so that leaves 16 waking hours, but less than 16 Dollars/pennies. Assuming you’re working full-time, that’s another eight hours, which will use up more than eight currency chips. Why will working eight hours use up more than eight chips? Because, with fibromyalgia any mental or physical exertion, and any work-related stress, uses energy faster than that expended by a person without fibromyalgia. And you still have to take a shower, get ready for work, take care of the kids, fit in some exercise, eat right, play with your pets, work on a hobby, grocery shop, clean, cook… No longer can you “do it all” like you once could. Those days are gone. Give them a bittersweet send-off, bid them adieu, it’s time to style a new life. Grab hold of your new chapter, this is growth, this is positive change. Fibromyalgia is not a death sentence, it can be one of the most positive things that ever happened to you. It’s just possible that you are “doing too much”, and fibromyalgia has forced you to slow down. That’s what happened to me, and it’s one of the best things that’s ever happened in my life. So, please, don’t let it get you down. Seize life with both hands and enjoy the new delights and challenges around every corner. This is what life is about: challenge and growth. I truly believe fibromyalgia was given to me so that I could grow and change. Before I had fibromyalgia, I was stagnant, unmotivated, and uninspired. I was given the gift of an invisible illness that was incredibly hard to diagnose so that I could share my experience with others and carry the message. So, what’s an active woman to do? Why, stay active, of course! Everything in moderation, though. And keep track of those pennies. It makes cents.

 Just Say "No": Nancy Reagan coined the phrase when referring to the drug problem in the 1980s. And many of us listened. “Just say no” started the 12-step revolution, one I participated in fully. (Hey, I never said I wasn’t into mainstream-ism.) I’ve always admired a friend of mine who isn’t afraid to say no, and isn’t afraid to insist on what she wants. I would think to myself, “I want to be her.” We all need to learn to be true to ourselves and not be afraid of what people may think if we exude confidence and state clearly and unequivocally what we want and need. It’s been a favorite subject of the writers of “Desperate Housewives” for the character Lynette Scavo, to depict her in impossible situations where she’s forced into volunteering for this or that childrens’ function by the other mothers at the school. Each time Lynette is depicted in this way, the writers do one of those “moral of the story” things where it’s made clear that Lynette needs to learn how to say no. Most of us fibromyalgics are Lynette Scavo. Smiling as we reluctantly accept yet another “assignment” from a neighbor, friend, co-worker, relative, or acquaintance laying the guilt-trip on us, or playing the “it’s only fair” card. No, actually, it’s not fair, because I have a chronic, invisible illness. I’m sick every day of my life, every minute of every day. It’s just that the assigner of the project can’t see that, or maybe even doesn’t know. When Lynette whipped off her wig in this season's premiere episode, exposing her bare chemotherapy skull, she played the “I’m sick” card, and she did it deliberately. We don’t have to get that extreme. Besides, what could we yank off that would expose fibromyalgia in a dramatic flare? (pun fully intended). Not a whole heck of a lot. Better to learn what my friend does. Take an invisible, deep breath, sit or stand nice and tall, adjust your posture, make direct eye contact, and just say "No."


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