When life gives you lemons, make lemonade!

I love to be in the heart of the action. I love the rush, the thrill, the feeling of your heart beating out of your chest as you are about to reach your goal. With my Fibro, I now have to watch on the sidelines. I can’t run at the head of the pack, for when I do, my body only stays there until it gives out, and I end up paying for my over exertion. You pay to play. And, my Fibro makes me pay a lot. It’s taken me years to figure out the checks and balance system of this syndrome, and I am still redoing equation as I go.

That’s the most confusing thing about Fibromyalgia, how to balance your life with your disease. Because they are not the same yet they do affect one another. As soon as you figure one thing out, another changes on you.
For comparison, let’s take a healthy individual in their early 30s; we’ll call her Jane. She eats right, exercises, and gets plenty of sleep, just like me. On the outside we look the same, except I have the added bonus of living life with Fibromyalgia. Which in simple terms means that I am always in pain. I have to continually work on gaining control of my body. Jane and I might look the same on the outside, but we are worlds apart on the inside.

If Jane slips on her diet, she might gain a few pounds. No doubt the same thing will happen to me if I ride the same slippery slope; however, my diet diversions come with extra perks, which are not polite to speak about in public. If I followed the rules and was a good girl, I would be eating a very restricted diet, saying goodbye to some of my favorite vices like sugar and caffeine. In fact, most fibromites avoid many of the delectable delicacies that life has to offer, sticking to an alcohol, sugar, and gluten free diet. Life is too short. I take what I can get in small doses. I don’t know how I would eat gumbo without cornbread. It just wouldn’t be civil.

When Jane falls behind on her excise program, she might lose a little of her muscle tone, or her jeans might be a lil’ tighter. It takes her a few days to get back in line. If I fall behind, I feel it everywhere, not just in my jeans. My joints hurt, my bones ache, and it takes every ounce of effort I have just to get out of bed. To make it worse, my bowels get out of whack, and I have trouble sleeping. The longer I leave my dancing shoes off, the harder it is to put them back on; nonetheless, all the more reason I should.

I try to get a full 6-8 hours of sleep every night. Yet when I wake up in the morning, I might as well just have taken a two-hour nap. With Fibromyalgia, your body never goes into full REM sleep mode. Your muscles might continually twitch throughout the night, leaving you tired and sore in the morning. ‘Jane’ can go out with her girl friends dancing all night, get three hours of sleep, and then, maybe she might just feel the same way I do on a normal Monday morning.

Having said all that, this is not a tale of woe. This is not an explanation of how ‘Jane’s’ life is easier than mine.
This is a story of triumph over obstacles. Remember my checks and balance system?
Check one, a normal gal, ‘Jane’ can eat a normal diet.
Check two, ‘Jane’s’ exercise program is easy to develop and maintain, compared to a person diagnosed with Fibro. Check three, ‘Jane’ can maintain REM sleep patterns in order to feel rested after a full night of sleep.

But how does the balance side of the equation come into play? My negative checks far out way the positive side of the calculation. Sure on the outside ‘Jane’ and I look alike. Two healthy looking young women, who eat well, get 6-8 hours of sleep, and exercise regularly. But why with all my constant pain am I better off than her? That’s right, read it again! I said with all my constant pain, I am better off than her.

I have learned to look at life with a different set of eyes. I think the saying goes, “when life gives you lemons, you make lemonade.” Yes, I am tired all the time. Yes, I hurt all the time. Yes, I don’t get to eat or drink just anything that I want in the world. And yes, my exercise program is not easy to keep up or forgiving. But with all these issues, I have learned to accept them, work around them, and dare I say it, almost enjoy them.

My value system now is keenly different than what it was before I was diagnosed with FM. I find that the littlest things do not bug me anymore, except when my pain is at its worst. You see, there are few days where I feel close to 100% well; days where my body does not hurt, my muscles do not ache, my mind is clear, my bones are strong, and my bowels are fully functioning. Of course those days are few and far between. Actually, I think I can count on one hand how many perfect, pain free days I have had in the past year alone. And on those days, those precious days, that is when I am truly alive.

Now, you must be wondering how do I make my lemonade from such sour lemons? Finding beauty in the smallest things is key. I love hearing live music, but the loud thumping bass and large crowds make my nerves stand on edge. That kind of made rock concerts out of the question. And mosh pits at a punk show, yeah right, ain’t gonna happen! So, my musical lovin’ brain and my body had a little heart to heart chat. Now at the performances I attend, I will either sit down, or stand in the back away from the bass and the crowds. If I really need to get my angry punk self on, I blare it from my truck in rush hour traffic! There’s nothing better to calm my nerves than Fumanchu singing King of The Road on the 101 at 8am! Over the past five years, I have discovered a new love for 20th century composers as well. I thought Beethoven had fire in his arsenal, then I heard Shostakovich, and my mind was blown away.

Before FM, I used go out at night to dance clubs. I was really never a drinker. My friends would go out to drink, and I would dance. I would like to feel the music through my body. Dance gave me that, and for a while Fibromyalia took that away. It was not until I found opera, ballet, and jazz, did I find that just seeing other forms of musical performance could help me feel the music without hurting.
Opera fills your entire body with emotion. The scenery fills your eyes with visions unlike your daily world. The sounds are so emotional that they help me escape the pain I feel. The opera itself transforms you into another world.
I loved all of these forms of art before my illness; now, I love them even more.

Thomas Moore said it best, “To the soul, there is hardly anything more healing than friendship.” My friends and family are now more important to me than ever before. They help keep me sane in the darkest hours. And they are there to help celebrate the best of times! Without them, I would not make it through many of life’s challenges. I don’t know if it being older, wiser, or the plain fact that with FM, I just don’t have time to mess around with any bull or drama, I now am very picky with my quality of friends. I might have fewer friends in numbers than I did before I was diagnosed with FM, but what I lack in quantity, they make up in quality!

And even when my life seems to have too many sour lemons to make any lemonade, I find sweet pleasures everywhere I turn. It doesn’t always have to be perfect to make me smile. The weather might be gloomy outside. I might be flipping a coin to try and decide to take 2 or 4mg of pain medication. My heating pad might as well of been unplugged for all the help it is giving my lower back. And yet, there is still something to smile about, if you know how where to look for the simple pleasures in life!

My simple pleasures: morning light on a dew drop, star lit nights, the smell of fresh rain, a nice cup of tea, a good book next to a fire on a cold night, my soft pillow, my bike on a twisty road, mixing yogurt w/fruit on the bottom, sharing good food with a friends, watching kids marvel at the fish feeding at the Cal Academy of Science, Tosca’s aria during Act II, and my list goes on…

What are some of your simple pleasures?

thanks to Sally W. Pruden for her beautiful lemon picture
See The National Pain Foundation’s Triumph of the Spirit Awards

Reiki: does it work for Fibro?

Since Fibromyalgia is such a complex condition, it takes a intricate level of healing to manage its symptoms. One has to look out side the realm of just modern medicine and sometimes back to ancient eastern medicine for cures for pain.
Reiki is a Japanese healing practice that promotes health and well being through a non-invasive technique. And for people affected by fibromyalgia, non-invasive is key. Anything that we can do that does not hurt us that will help to lower our stress levels and improve our overall well-being, we will try. ( Hey, I remember one time being in pain, I placed cod-liver oil on my stomach because I read somewhere that it would help reduce my cramps. It didn’t. It made a huge mess. I still laugh about it today, and that laughter is important. So, in the end it worked.) Reiki works by laying hands on the person to help them. It is based on the idea of our life’s energy force is what keeps us healthy. When that energy gets low, we get sick. The cool thing about it is, you can practice it by yourself, have someone help you, and you do not have to stop your other medical treatments to try it. But do it work for fibromyalgia patients?

The NCCAM (National Center for Complementary and Alternative Medicine) says that Reiki does not improve symptoms for patients of fibromyalgia, based on their study. At the University of Washington, Seattle, the researchers did a study of 100 people funded by the NCCAM to see how Reiki worked on people with fibro . They tried Reiki on a couple of different ways- hands on subject, and hands off subject, neither of which produced any affect on their pain. Are their too many variables when it comes to fibromyalgia to do a proper test? Or is this ancient art of healing which dates back to the 1800s just too old for the complexity of fibromyalgia?

What do you think?

To read what NCCA has to say, look here: nccam.nih.gov/research/results/spotlight/050809.htm

Breathe right

Sometimes the smallest things can have the largest effects. Learning a simple task like controlling your breath will make a world of difference on your level of stress, anxiety, pain, and overall health. Think about it, whenever we become nervous, tense, or are experiencing a pain attack, we hyperventilate. Our breathing patterns become deep and fast, the amount of oxygen and carbon dioxide we have gets out of balance. This pattern not only adds to our anxiety level, but if this happens often, it will take its toll on our bodies. Also during times of hyperventilation, our hands and feet could tingle, the blood flow to our brain is restricted, and our airway passages could inflame, all because of the low levels of carbon dioxide. Like we really need any more added stress on our bodies in the first place.

Learning to control your breath will not only help Fibro patients, but it can others as well.

Breath control therapy can help people with problems such as:

* Fibromyalgia
* Chronic and acute pain
* Asthma
* Depression and low self esteem
* Unhealthy relationships
* Stress and anxiety
* Respiratory issues
* Headaches
* Recovering trauma patients
* High blood pressure
* Eating disorders
* Drug and alcohol recovery
* Singers
* Runners and other athletes

Benefits of learning to control your breathing include:

* Healthier body
* Increased energy levels
* Stress and anxiety reduction
* Positive body image
* Controlling your anger and irritability
* Better sense of spiritual awareness
* Overall better sense of well-being

Breathing, sounds simple right? Well, it takes a bit of exercise to get the hang of it, especially when you are in pain or stressed. To learn how to control your breathing, no matter how you feel, is a real skill.

Here’s a few different ways to practice controlling your breathing:

Cool air in- Warm air out

• Practice when you most relaxed (I usually do it before I go to sleep at night).
• Lie down or sit in a comfortable position, if you can.
(a knotted yoga position is not necessary)
• Close your eyes
• Take a slow and deep breath in through your nose.
• Concentrate on the cool air coming in through your nostrils.
• Hold your breathe a few seconds.
• Breathe out slowly, evenly, and quietly through your nose.
Pay attention how warm the air is as it exits your nose.
• Do this for a few moments until all your cares wash away- or for me, until I fall asleep.

Shallow breathing for long periods of time causes your chest and shoulders to tighten up. When you breathe really shallow, you are breathing from your upper chest and not from your diaphragm.

Here is another way to practice controlling your breath, which I learned from when I sang:

• Lay down, with a pillow under your neck for support.
• Place one hand flat on your chest.
• Place one hand flat on your abdomen. (right bellow your rib cage)
• As you breathe, watch the movement of your hands.
• If your chest hand is moving, you are breathing shallow. As you take in your next breath, concentrate on making the hand on your belly move.
• Make sure to take slow deep breaths in through your nose and out through your mouth.
• Note: When I was singing, I used to place books on my abdomen (right on my diaphragm) instead of my hand. However, I would not recommend it as a relaxation technique.

Here’s a meditation YouTube relaxation to listen to while you practice your new breathing techniques:
Simple Relaxation, a Guided Meditation by Quiet Mind Cafe