The Fibro Follies

Sometimes, it’s really hard to do this - the blogging about fibromyalgia thing, I mean. I don’t want to merely recount statistics, cover treatments and new studies and trials. I want to tell stories. And unfortunately, or fortunately, that means coming face to face on a daily basis with the hell that this illness brings so many patients. I’m one of them, but I find comfort focusing on others. My fibro is, thankfully, somewhat under control as long as I do the right kind of yoga and walk just fast enough and long enough (but no faster and no longer), maintain my diet and take my medication and supplements. It’s a fast dance on a tightrope; one wrong move, and I’m over the edge. But, for the most part, I’m walking the rope pretty well. And this mix - of management, of mind control, and of focus on other things - helps me ignore my own condition in a sense.

But then I come here, to this blog, and I have to face the truth again - the truth, as reflected in this discussion at Flickr groups, titled “Simple Pleasures with Fibromyalgia/Something Only a Fibromite Can Understand. Today I . . . ”

Yes, telling these stories makes me look in the mirror and recognize myself. But for the well out there - maybe the loved ones of someone with fibro who’ve come here looking for information and answers? - take a moment and think about a world in which you would celebrate a day in which one of these tasks was your biggest accomplishment:

• “Today I managed to get my arms up enough to put my hair up into a twist on the back of my head.”
• “I scrapbooked with a friend for 2 hours and did 2 loads of laundry! WooHoo!!!!”
• “Today, i will do something i haven’t done in a couple weeks, and that’s taking my son to the park to play with friends…”
• “Today i managed to do a bit more cleaning and organizing of my middle son’s room . . .”
• “Today I actually managed to stay at work for 2 hours! I usually can only make it one or one and a half, but I worked through it!”

For the well folks who are reading this: Can you imagine feeling so happy about getting your hair up in a ponytail? (For me, when it’s flare-up time, it’s being able to put on and lace up tennis shoes, and not having to wear slip on mules.)

I salute Mommylolly, Kira Girl, and the other brave souls who claimed their own victories in that thread. I think it’s something we all ought to do, whether to others or just to ourselves. So, for the fibro patients, I submit the following suggestions on how to celebrate your accomplishments:

1. Get a journal and make it a habit to write down at least five good things about the day that just passed right before bed. This is called a “gratitude journal” and it can really make a difference in your outlook and perspective. Taking the time to acknowledge the good - the blessings we receive - not only makes us feel better in the moment, but it also “primes the pump” in a sense, and increases the likelihood that we receive more blessings in the future. Don’t believe me? Try it for yourself for a few weeks with an open mind! You’ll be pleasantly surprised at the number of little synchronicities that start popping up in your life when you take the time to acknowledge the good and feel grateful for it.
2. Honor your body, and let it tell you what it’s capable of in the moment. Too often, especially in this competitive Western culture, we’re all about exhorting ourselves to “push it to the limit!” - “no pain, no gain!” - “take it to the next level!” Well, these might be admirable goals, but they must be tempered with a faithful obedience to the messages from our physical bodies that we receive all the time. The first step in listening is to pause, and try to turn down the volume on the exhortations to push ourselves further, to do more, to be more, to achieve more. When the body tells you that the second mile isn’t a good idea, honor that and stop the workout a little early.
3. Take the time to treat yourself with extreme tenderness and care. What do I mean by that? Instead of rushing through your morning shower, take the time to bathe slowly and pay attention to your body. Instead of raking a comb through your hair quickly or twisting it in a quick ponytail, take a few extra minutes to comb it carefully, gently. Make a little extra effort with your appearance, or in the foods that you select to nourish your body. Don’t simply grab the first, familiar thing off the shelf - try the organic or free-range or imported version once in awhile. Make sleep and meditation time absolutely sacred. By doing these things you send the message that you are worthy of feeling good, and your sense of wellbeing improves as a result.
4. Run through your gratitude list first thing in the morning, even before getting out of bed. Think back to this morning when you first woke up. What went through your mind? If you’re like most, it went something like this: “Oh god, time already? I barely slept. I feel awful. Maybe a few more … oh, crap, gotta get the kids up, can’t be late, then there’s that meeting today, I just want to sleep some more … this sucks! Oh well, might as well get up now.” Sound familiar? Now, think about how it would feel to start the day like this - imagine just opening your eyes to the softening, brightening dawn light and thinking, “Wow, what a blessing, I get another day on this planet! I’m so grateful for the gift of my life. I love my kids and my spouse and am so grateful for them. I am so grateful I live in a country where I can get the medical care I need. I’m so grateful for the Internet so I can do my own medical research and educate myself on my own care …” You get the point. The difference is astounding - but don’t take my word for it. Try it out for yourself. It might feel strange at first, but you’ll soon grow very fond of that extra sense of energy and peace!
5. Make time for yourself every day. It’s trite and a cliche, but it’s a cliche because it’s true! Time to ourselves allows us to rehabilitate and refresh, and gain some much needed clarity. You will never be any good for those you’re trying to take care of if you don’t take care of yourself first. Here’s another cliche to make the point: “In the case of a sudden drop in air pressure, these oxygen masks will fall from the panels overhead. Place your mask on yourself FIRST before assisting others near you.”
6. Look for small, simple ways you can add physical beauty and sensory delight to your space. How about some fresh cut flowers? A few beautiful silk pillows with colorful fringe? A painting that delights your eyes? Some of your favorite music? Add some beauty to your surroundings, and remind yourself that there is good in the world every day.
7. Share your accomplishments. Tell someone - even if it’s just your dog! - about your greatest accomplishment at the end of the day. My daughter loves a show on Disney called “The Suite Life of Zack and Cody.” One of her favorite characters is the hotel heiress London Tipton, who’s a bit of a ditz, although in a good-natured, self-absorbed kind of way. One of her favorite sayings is “Yay me!” So - pull a London! Find your cheerleader and say to that person (or dog, or goldfish, or couch pillow …) “Hey, guess what I did?! I got dressed and went to the grocery store! Isn’t that fabulous? Yay me!” (It’s even more effective when you add the little London Tipton jump up-and-down and hand-clapping with a big grin when you say it - like this.)
8. When you begin to get down about not being able to accomplish more, take a step back and get some perspective. I hesitate to write this one - I think some might possibly misunderstand this as “stop whining.” That’s not what I’m advocating, at all. (Although my favorite yoga tank top has a saying across the chest that reads “Whine less. Breathe more.” If it helps you, take the mantra with my blessings!) What I’m saying is to try to step outside yourself for a moment and look at things objectively. See yourself as you are - flawed, wonderful, and amazing, when you really think about it. You’re a pretty cool customer to be able to deal with chronic pain and be here at all. Now, consider other people and their natures as flawed, wonderful, and amazing. See, everyone has their own baggage to carry, and no one’s baggage is exactly like anyone else’s. This particular baggage is yours, in this particular time and place. There’s no sense comparing it to something else or someone else, because they’re all different. Bring your focus back to your experience, and work to be able to experience without reacting to it. Equanimity is the word of the day.
9. Write down the Magic List, and put it into motion. This one’s kind of special, but it requires reconnecting with the child inside who has no sense of shame or grown-up “appropriateness.” As fast as you can, write down every single thing that makes you excited or giddy or feel good. Mine includes “sparkly tiaras, bubble baths, horses, beach walks with my daughter, shopping in Charleston, the Grove Park Inn Spa in Asheville, candles, featherbeds, sex, and Disney World.” (Among other things, and in no particular order.) The longer the list, the better. Work on it periodically - take it out and add more things to it as they come to you. Whenever you need a recharge of the batteries, pick something on the list and do it. If it can’t be done immediately - like my trip to the spa - then start planning it for real - no fair making this some intellectual challenge! It has to be genuine, so pick a date and promise yourself to stick to it.
10. Send some love to your body. I’m not talking about sex - though I’m all for that, too (hey, see my Magic List!) - but about telling your body that you love it and appreciate it for all that it does for you. Flawed though it may be, it’s a pretty incredible system when you get right down to it, isn’t it? So instead of sending dark and hateful thoughts the next time your fibro flares up, why not try adopting the same approach you’d take with a sick child? You wouldn’t shout at the kid for getting sick, would you? Of course not! You’d say loving things. You’d comfort it. You’d care for it gently. Do the same for your body, and watch it respond positively!

How do you celebrate your day? Add your own thoughts below in the comments!

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