When I think of my desire to get well, the idea of being “cured” has never been my emphasis. Would it be amazing if one day we are all completely free of fibromyalgia? Absolutely! But in my quest to live better, I have never focused on a cure as my destination. Instead of focusing on a cure – something I cannot control, I have tried to focus on my potential for living better in each moment – something I can control, and on building momentum during the good moments and minimizing the bad. It is a formula that often works, and continues to encourage me to keep trying, even if it means I sometimes fail and fibromyalgia wins.

In our frustration with the many debilitating symptoms and lifestyle disruptions of FM, we often look for (and hope for) the quick fix. Who can blame us? But if there is one thing I can share today to encourage and inspire those of you trying to make sense of the misery of FM, it is this – focus on the things you can control, and let go of your attachment to the things you cannot. Be realistic. Understand that you can live better and that you do have a measurable amount of control over your symptoms.

Small changes can really add up to decreased symptoms and a better quality of life.

By being present and focusing on the variables you can control, you are doing the very best for yourself. Minimizing stress, eliminating sugar and gluten, exercising, etc. will not cure you of FM, but they will help reduce your symptoms and increase your quality of life. It is just a fact. A life with chronic illness is still a life full of potential and possibility, but we have a part to play to reach that potential.

Frida turned her pain into her passion.

The great Mexican artist and revolutionary Frida Khalo lived her life of chronic illness with passion and vigor – painting many masterpieces along the way. I am no Frida, but I certainly have a lot to live passionately for. Fibromyalgia or not, my life has purpose and I intend to continue focusing on the possibilities rather than the pain. And I know I am not alone. There are many of you who feel the same, so for you, this is just a gentle reminder of your potential.

And for those of you who need a little more encouragement I offer this:

Start small. Change happens slowly. This is an uphill battle we are all facing, but each baby-step takes us closer to where it is we want to be – as long as we have a realistic view of our destination. The path is bumpy, and dusty, and there are many obstacles – and even some booby traps – but with dedication and determination, it is passable.

Celebrate and build on the little victories. Again, this means you must have realistic expectations. Maybe you start walking 5-10 minutes a day. And 4 out of 7 days you do so relatively pain free. Yes! Definitely worthy of a celebration. Sometimes you will not see the results of your efforts immediately, but just know that your efforts are having an effect, and that change is happening. This is why it is so important to stay encouraged, because our bodies give us many reasons to be discouraged. Chose to focus on the potential, not the pain.

Understand that even with improvement, the bad days will still come. This does not mean that all of the good work you have been doing is lost. It does not mean that you should be discouraged and give up. It is simply a fact of a life with chronic illness – one of the facts we cannot change, so slow down, accept the setback, and prepare yourself to move forward again once you are able. Fibromyalgia is not a static condition. It changes and fluctuates constantly. Know that no matter how bad you are feeling in any particular moment, there are better moments ahead. Pain of today does not reduce your potential for tomorrow.

If you have been diagnosed longer than a few years, you most likely recognize the shift in the awareness and overall understanding of fibromyalgia. Yes, there are still uneducated nay-sayers out there, but the gap between reality and perception is definitely closing in and this is a very good thing. Awareness is key!

So again, what does all this Fibromyalgia Awareness mean and how do we benefit? Here is my take on the matter:

5 Reasons Fibromyalgia Awareness Campaigns are a Good Thing

1. No longer having to give a medical dissertation every time someone learns I have fibromyalgia.

Even if their understanding of FM is only as “that pain thing,” most people have heard of FM, know someone with FM, and have a general understanding of the debilitating symptoms of FM. I no longer feel like I am fighting a losing battle in trying to help people understand this complicated condition. Every day there are more and more resources out there, which generally give sound explanations and advice – like the American Pain Foundation, and their campaign to spread awareness. Good stuff!

2. A greater understanding and awareness of fibromyalgia in the medical community.

And again, yes, there are exceptions. We all have our doctor horror stories, but more and more I am hearing stories of wonderfully helpful and compassionate doctors; doctors serious about addressing the complex and highly individualized symptoms of FM; doctors determined to find ways to bring their patients relief and improve their quality of life. There is an ever increasing number of doctors out there determined to take on the ugliness that is FM, and this shift is a direct result of a growing compassion due to growing awareness.

3. New diagnostic criteria.

One of the main reasons fibromyalgia has not been easy to diagnose, treat, and even understand is there is no definitive diagnostic test. The fibromyalgia tender point test is so subjective that many medical professionals did not place any value in it as a means to diagnose FM (and therefore avoiding dealing with FM patients altogether). The results can vary from day to day with each FM patient, and each practitioner brings their own subjective understanding to the process. Too much variance! But now that FM is widely accepted as a legitimate chronic illness, clearer and better diagnostic criteria are being developed, and this is a very good thing. There is hope that eventually there will even be a definitive diagnostic test, possibly Brain Imaging, saliva, or blood testing. Better understanding and treatment are on the horizon.

4. A greater understanding of what can and will help alleviate symptoms of fibromyalgia.

While there is no clear cut – “Do this, Don’t do that” – we do have a better understanding of the lifestyle changes we can make that will help improve our quality of life. We understand that mindful movement is important for our bodies, with the key word being mindful – mindful of our own unique bodies and limitations. We understand that nutrition plays a large role in exacerbating the symptoms of FM. I have yet to meet a person with FM that did not benefit from eating a healthier diet. We understand that relaxation and stress management play a huge role in the severity of our symptoms and our ability to cope. Yes, our minds and bodies are clearly connected. We understand that we have a measurable amount of control over the suffering involved in living with a chronic illness. We have choices!

Happiness is a choice, not a condition. ~Carlos Santana

5. Hope and Community.

HOPE: More and more  I am reading and hearing success stories of people learning to live well with fibromyalgia. This is not the same thing as living symptom free of FM. Living well generally occurs after a period of emotional exploration leading to eventual acceptance – acceptance that we are whole, despite all that is different – we have options, despite all that has changed – we are valuable, despite all we have had to let go. With acceptance, we are free to explore the potential of today and the promise of tomorrow. And we are all full of potential!

COMMUNITY: More and more I am seeing new bloggers in the fibromyalgia community, more facebook groups, and just a general outreach and community building effort. I have said it before and I will say it again – Community is Everything! Where else would we turn for understanding, support, information, education, encouragement? Some of my dearest friends have come to me through my FM community. I love when I see friendships form between people who have connected on a blog, or facebook page , or twitter. It is happening everyday, and it is a beautiful thing!

So this is what awareness looks like. This is how awareness creates change. And this is how we each benefit from the continued awareness of fibromyalgia created by campaigns like Fibromyalgia Awareness Month, and Fibromyalgia Awareness Day. Get involved. Do something to help spread awareness – talk about it, write about it, leave a comment on your favorite blog, send an article or a great online resource to your doctor or your loved ones. Do something. Be a part of the change.

I started a discussion by asking how I could encourage some of our members who never come out to attend a meeting. I’m not sure if we ever answered that question, but we all agreed that Fibromyalgia and chronic illness can be very isolating if you let it. I have many thoughts on the issue, but the one I want to focus on here is how fortunate we are in this day and age because of the internet. There are huge communities of people online making connections they never would have were it not for their computers. So today, on Fibromyalgia Awareness Day, I thought it would be fun to share with you how some of my fellow bloggers acknowledged the significance of the day on their blogs.

Time thief posted a great educational article on Fibromyalgia at this time – this space. Very well done!

Over at Chronic Babe the Editrix is asking her readers today “Are you well-read? Well-informed? Do you keep up on research? Read the latest journals?” And if you answer no to any of those questions she steers you in the right direction with information, suggestions and resources. 

Michelle at Rhetoric Aesthetic reflects on her own anniversary with FM “in hopes of raising awareness, overcoming stereotypes, and celebrating the good that has come.”

Living It, Loving It reminds us this year’s theme is “Fibromyalgia Affects Everyone” and the goal this year is to emphasize the sweeping effects of the disease. She also has a great list of resources to check out.

The retro housewife shares how Fibromyalgia turned her into the person she is today – brave, strong and GREEN. Learn how she became an environmentalist to help eliminate the toxic chemicals that many believe cause/contribute to Fibromyalgia.

In honor of Fibromyalgia Awareness Day, Fab Fibro Friends decided to blog about her life with fibro.

Sheri at Prospering Over Fibromyalgia lit a candle for us all and asked that we pass it on.

Life as We Know It wants everyone to understand chronic fatigue syndrome is a physical, not psychological condition.

Fibro Helper Gin has a tea schedule where she plans to dispel the myth that “all Fibromyalgia patients are fat, white, American suburban housewives looking for attention.”

Sherril put together a great catalog of various events going on today and Fibromyalgia resources in general. Check it out at The ICI Experience.

Rochelle uses Fibromyalgia Awareness Day as a platform to share her personal Fibromyalgia story on her blog Learning to Trust.

The above is just a small sampling of what is out there. I would LOVE it if you have a blogger you would like to add to this list. Just leave a link to your/her/his blog in the comments section.

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In 1993, May 12 was designated as the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) by Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases), to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden. Despite her illness, she managed to found the world’s first School of Nursing.

The National Fibromyalgia Association (NFA) joined the Awareness Day effort in 1997 and has led the call for increased recognition of fibromyalgia each May 12. The NFA collaborates with fibromyalgia support groups and patient advocates around the world to coordinate innovative national and international events in honor of Awareness Day. Awareness Day activities are designed to increase awareness of chronic pain illnesses including fibromyalgia, as well as to assist patients and organizations in educating the general public, healthcare professionals, government officials, and legislative bodies.

The National Fibromyalgia Association’s theme for the 2009 National Fibromyalgia Awareness Day campaign is “Fibromyalgia Affects Everyone” and will focus on the far-reaching effects of this disorder—from broken lives to the economic costs to patients and society. 

There are events going on all over the country (and world) in honor of Fibromyalgia Awareness Day. If you would like to see if there is an event going on in your community you can check the NFA community events page. 

How I plan to participate in Fibromyalgia Awareness Day

I struggled to come up with one thing for my fibromyalgia support group to do in honor of May 12. The NFA is doing a walk and I considered following their lead, but then I thought about walking, and I thought about getting other group members to walk, and I quickly decided that a luncheon would be a much more successful event. But I didn’t stop there. I schedule three events for my support group members in honor of Fibromyalgia Awareness.

On May 12 we will be having our luncheon at a local mediterranean bistro. A bit fancier than the coffee shops where we usually meet. I am looking forward to a great afternoon of socializing with the spirited and resilient members of my group. If you have the impression that support groups are depressing, this group would change your mind. Someone suggested we should be called an empowerment group instead! It is definitely under consideration.

On May 15 we are meeting at the beautiful Chopra Center in La Costa to take an intro to meditation class. Meditation is not as easy as it sounds. It takes practice to learn how to quiet your mind and breath in a manner that will restore and refresh you. At this introductory class they spend half an hour teaching about meditation, and half an hour practicing. I went to the Chopra Center last night with another group member to practice the daily 30 minute meditation, and get an idea of what to expect when we return next week. I took a couple of photos so I could share them with you.

Meditation Room

They were very welcoming and the environment is so relaxing and reverent. I hope each of my group members takes advantage of the free opportunity they are extending us.

Finally on May 16, The Wellness Center is supporting Fibromyalgia Awareness and offering a free gentle yoga class to my group members, and to anyone in the community who is interested in participating. I felt it was important to have one event that was active, and since I am a huge proponent of yoga, I am very pleased that we were able to organize this.

It is going to be a busy week, but I am grateful for my group, and grateful to the community I live in for their generosity and participation in promoting Fibromyalgia Awareness.

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