But I was never happy or content with that state of being. Who is? Who could possibly be? Even when we reach a state of acceptance with our illness, it does not mean that we are content living with it. I was certainly not content – a shell of my former self, and a shell of the person I could still feel inside of me. My true essence is not that of a sick person. My true essence is beauty, strength, light, love, and possibility! And I could feel each element deep inside me just waiting to burst through. Something had to change!

So I changed the only thing I had any amount of control over – ME!

Actually I did not change me so much are get reconnected with ME – the me deep inside that I had lost touch with over my many years of illness. She hadn’t gone away, she simply had been neglected. And the first thing I did to reconnect with her was to forgive myself for neglecting her, for neglecting ME. I had been doing my very best to cope with my illness given the skills and understanding I had available to me at the time. As we all know there is no manual on how to live with chronic illness. It is a complete process of trial and error. We are the pioneers of fibromyalgia. So where to begin?

I began with the simple belief that my life had much more meaning than my illness. I began to listen to my intuition, which told me things could be different, things could change. I allowed my true essence to become louder than my doubt, worry, frustration, and fear. I gave more authority to ME and less to my illness. I opened my heart to the truth of ME and began to allow hope and joy back into my life. I worked hard at not letting the once loud voice of my illness, which at times drowned out any other sounds, to again become the only thing I could hear.

And I did more work. Slowly, yet regularly I began practices and behaviors that reinforced ME and turned down the volume of my illness. I completely changed the way I ate – no more gluten, and a lot more veggies, nothing processed, everything fresh. I began a regular yoga practice, starting once or twice a month in the extra gentle, senior class, and slowly progressing over two years time until here I am today, teaching gentle yoga and practicing regularly. I began reading books, magazines, and web content that enhanced and reinforced my new focus. I found a local spiritual community where I feel love, hope, and an even greater connection to the essence of ME. I could go on and on, describing the ways I have worked over the past two years to reconnect with me, and disconnect with my illness, but I think you get the point.

I am not symptom free. I likely never will be. But what I am is hopeful, and happy, and whole. I am whole despite what is missing. I am whole despite what is different. I am whole despite my symptoms. I am whole because I am again living from my true essence, not from my illness.

We are all so unique and valuable. I believe we feel pain so intensely because we feel everything intensely. It is exactly our capacity to love that gives us this incredible capacity to hurt. We can chose to focus on the love, and the essence of our being, rather than on the pain and symptoms of our illness. It is not living in denial. It is not mind over matter. It is essence over illness. You are so much more than your illness! And you illness can never diminish or extinguish your true essence. You were born with it, and you will die with. Now is the perfect time to find your own way to tune into it and let it once again become what you live from. Your formula will be your own. You know what makes your heart sing. You know what makes you feel like a complete and whole being. You know what makes you YOU! Find a way to spend more time there. You are love, you are light, you are beauty, and you are hope! The world needs more of YOU!

(self reflection photo courtesy of www.jennypalu.com/selfreflection.html)

Healing from chronic illness is so much more complicated than just treating the symptoms. Prescription meds may help us cope, but they do not correct the original imbalances that led to dis-ease. And with difficult-to-understand illnesses like fibromyalgia and chronic fatigue syndrome, it is not always possible to pinpoint just one specific cause. Often it is a series of causes like a traumatic event experienced while in the midsts of some other type of recurring life stressors. There are many different types of traumas that can lead to chronic illness – physical, emotional, viral, environmental. With so many possible factors, it is easy to see why treatment is so difficult.

Knowing your trigger.

When putting together my blueprint, it was easy for me to pinpoint the exact moment when my trigger was switched – the day I broke the porcelain toilet with my head. Yes, I would definitely say that qualifies as a trigger. And the immediate downward spiral of my health from that day on is a clear indicator that the physical trauma opened the door to chronic illness. So I can with confidence say that my trigger was physical. That is the easy part. But what I must also consider is how my lifestyle leading up to the trauma left me predisposed to developing chronic illness.

Not everyone who suffers a debilitation head trauma ends up with fibromyalgia.

The concussion and brain trauma that resulted were expected outcomes to the physical trauma, but the pain and fatigue that increased daily were not. So why did I end up with fibromyalgia after the head trauma? Was I genetically predisposed to it? Did my lifestyle leading up to the accident leave me vulnerable to chronic illness? In both cases I believe the answer to be yes. But I am not a medical professional, and I cannot change or debate my genetics, so I am only going to focus on my lifestyle leading up to the event.

Busier is not always better.

I had what I thought at the time to be a very healthy and active lifestyle. I had a great job, a fun and active social life, I exercised regularly, ate well, was in a healthy relationship  - sounds pretty perfect, right? Well upon reflection it was not so perfect after all. In reality I was wound so tight that I was just waiting to snap. I never said no to anything. I was always on the go, never really taking the time to relax and enjoy my life. I was simply pushing through one experience to get to the next, like a small child who won’t drift off to sleep for fear of missing out on something. I had to be engaged and involved in everything because it was how I defined myself – “I am Dannette, the girl with the most active and full life ever!” With or without the head trauma, my lifestyle was eventually going to catch up with me. A crash was inevitable.

So while I can easily state that my trigger was physical, the depleted state of my being leading up to the physical trauma likely left me vulnerable to the prolonged crash of chronic illness.

Why is it so important to understand all of this? Again, I am not a medical professional, so this is all theory on my part based on living many years with chronic illness, and my current experience with improved health. The reason I think it is so important to understand the trigger is because I believe it will best inform how we should approach our own unique blueprints for healing.

My trauma was physical and so is my treatment.

Unless this is your first time reading my blog, you know that I directly attribute the healing I am experiencing to my regular practice of yoga. I was very athletic leading up to my accident, and tried many times over the course of the first 13 years of my illness to return to my former athletic ways, only to fail and end up in miserable pain. When I discovered the healing powers of gentle and restorative yoga, my body responded immediately. I found movement without pain! And because of the neurological nature of FM, yoga is an excellent mindful movement to practice as it regulates and balances the central nervous system.

I did not have any viral issues to address, like so many people with FM and CFS do, so in a way I am fortunate. My blueprint is pretty direct. I have seen tremendous improvements by incorporating gentle movement back into my life, and by addressing several other contributing issues like food allergies (eliminating gluten), and toxicity (heavy metals).

Of course this is a simplified explanation of the many years of trial and error it took me to piece my blueprint together, but I believe if each of us take the steps to really address and acknowledge our triggers, we can begin to piece together a blueprint for healing. Take a long and truthful glance back on your life before the trigger. Were there other factors of your lifestyle that may have left you vulnerable? A difficult marriage or childhood? This would require adding an emotional healing component to your blueprint. Do you see where I am going with this?

I am no longer the girl who thinks I need to say yes to everyone and everything. In fact I try very hard to participate in only things that nourish me, and eliminate people and activities from my life that do not. Healing requires effort, and sometimes we have to make hard choices. It also requires us to be able to honestly reflect on how we, unknowingly or not, contribute to our own illness. It is only with awareness that we can make progress. So if you are ready to begin you blueprint, start here: What’s your trigger?

Asking for help is something I have never been good at, and accepting unsolicited help is even harder for me. This is something I have been working on as I feel it is due to an unhealthy amount of pride and ego. I never like to seem weak or vulnerable. Very primal of me really, like a pack animal that hides illness or injury to continue to blend in with the herd and not appear like easy prey. It is a useful survival instinct, but one that has not always served me well.

And I need look no further than FibroHaven to see the wonderful results of asking for and accepting help. Take a quick look around this website and you can see my attention has been elsewhere lately. And as I shared recently, it is not from a lack of love or interest, it is simply a choice to spend my time and energy where it is best suited right now and not wear myself out by doing more than serves me.

So there have been very few blog posts and local support group meetings, and only sporadic Facebook updates. FibroHaven had definitely lost some momentum. And people noticed. And as I began thinking about how I could address the situation I remembered an offer of help that had come to me some months previous. One of the most active, friendly, and positive members of our online community had generously offered to get more involved with FH and help in any way that she could. So I contacted her and asked if she would be interested in becoming an admin on our Facebook page. To my delight she said yes and our Facebook community has never been better!

Pascale has enlivened the page with new energy and interest – sharing everything from relaxing meditations to important information on tinnitus. People are engaged and interested, offering their opinions and experiences and caring when others offer theirs. Each time I check in I see there are new members and new conversations on interesting topics. And because we all experience FM and chronic illness differently, I am realizing how important and useful it is to have more than one voice posting and encouraging conversation.

When Pascale first extended her offer of help, I was interested, but not clear on how I would utilize her. But when the time was right and the need increasingly apparent, it became very clear. I am so glad I reached back out to her and asked. And I am so proud to have her as a new voice for FH and in our FM community. And judging by the many conversations going on over there right now, so are you!

So please join me in welcoming Pascale, and thanking her for stepping in when it was most needed. Like all of us, she is doing this while continuously learning to live well with chronic illness. Some days we manage better than others. Somedays our voices are lively and active, and somedays we need to retreat. But with such a wonderful and caring community to return to, you can be sure FibroHaven will continue to inform, encourage, and inspire.

And thank you to The Fibromyalgia Network for taking notice of the new energy on FibroHaven and sharing our page with your community. You have been a positive and informative resource for all of us for many years. The work you do in invaluable!

Much Love,
Dannette

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 have been thinking a lot lately about how I can translate the improved health and continued healing I am experiencing into advice and encouragement for others. As the architect of my own health, the best way I can do this is to document my journey and explore the thoughts and philosophies with which I approach my wellness. Like the quote above says, we need to create in the light, and the more knowledge we have, the brighter our lights shine.

First I should correct my wording – I am not “experiencing” better health, I am manifesting it. It is not a passive action, as in the way we “experience” the weather, it is active, because each improvement is directly related to lifestyle changes and choices I have made. I am the architect of my current wellness path. And that has been pretty empowering – the realization that I have choices, and the bad choices I make directly contribute to the increase in my symptoms and the good choices I make directly contribute to the reduction in my symptoms. Sounds like a no-brainer right? So then why did it take me 13 years to reach this realization?

I have an idea as to why (based on my belief that western med/society is not about empowering the patient), but that is not the focus of this conversation. I am more interested in exploring how I got to this place of improved health and sharing what I hope can help someone else create their own blueprint for health.

I plan to do this in a series of posts, as it is impossible to cover everything all in one. My future posts will focus on first the trigger that sent us spiraling into chronic illness and if our lifestyle at the time of our trigger somehow predisposed us to our current chronic illness. I have a lot of theories about this and look forward to exploring them to see if anything rings true for others. This will of course require a look at all the many types of triggers – physical, emotional, viral, etc..

To continue the series I am also going to  explore: nutrition, exercise, self-love/compassion, relationships, our environments – home, work, nature, etc., and our spirituality. These are all things I am addressing in my blueprint, and it is the combination of these things that I believe has brought me to a place of better health and overall wellbeing.

There are so many elements that go into developing and treating a chronic illness, and  as we are all unique individuals, so is our experience with our illness. I know the blueprint for my health (which I am currently still in the processes of drafting) is not going to be your blueprint, but as all good architectures have done over the years, you can have a look at mine, and take elements from it that will help you build the foundation of your own blueprint.

As long as you believe better health is possible, it will be. But like all magnificent builds, it takes time, planning, and effort. You may spend months building a wall, only to discover it needs more stabilization. Or maybe one day you realize the foundation you poured is too weak to continue your build. Do you walk away from it completely? No, you acknowledge and address the problems with the foundation, give it time to set, and then move forward. Some days it is two steps forward, one step back, but as long as we keep stepping, progress is made.

Architecture, of all the arts, is the one which acts the most slowly, but the most surely, on the soul. ~Ernest Dimnet

If there is one constant in life – it is change. And change is what the NFA is experiencing. The below President’s Message from Lynne Matallana goes into great detail as to what led up to the necessary changes, the current status, and future intentions for the NFA. I appreciate that they finally came forward with an explanation and wish them the best of luck in their time of transition.

Begin message from the NFA:

	Educating Encouraging Empowering

March 10, 2011
Dear NFA Friends and Supporters,

When the National Fibromyalgia Association (NFA) started 14 years ago, our purpose was to bring awareness and legitimacy to fibromyalgia (FM). Over the years, the needs of the community grew and so did our concern for people affected by FM and those in the medical and research communities dedicated to helping us. We wanted to share with the media what it was like to live with FM so that others would become concerned and could help us to make sure things were moving forward so that people with FM would have better support, more effective treatments and a better quality of life. The ultimate goal has been and continues to be that through research and education we would learn the cause and how to treat, prevent and/or cure it.

The organization was started and grew out of my attic into a full scale international nonprofit organization which achieved great recognition and credibility with patients, the medical community and government agencies. Over the years the needs of this large population of people which we represented continued to grow. We found ourselves in a position where we couldn’t say NO to anyone who proposed new programs addressing the needs of this community because we understood the many obstacles and unmet needs that faced people with FM every day. We wanted to help ensure that everyone with FM obtained a better quality of life and receive the medical care they deserved.

At the end of 2007 no one anticipated the looming national economic downturn. The NFA like all other nonprofit and for profit organizations was not prepared for our country’s financial crisis, reduced foundation funding, or the impact of new restrictions and tighter transparency regulations put on companies that helped to financially support our organization. Our funding was cut by 50% to 80% and our annual $2 million budget diminished by 60% in a matter of months. There were those in the FM community who were in a position to help us, and we greatly appreciated their donations and contributions. However, because so many in the FM community are struggling and not able to make donations there was no way to make up the difference. Then, in September 2010 right at the height of the NFA financial crisis, I was in a terrible accident that resulted in a major surgery, which required four months of bed rest followed by nine to twelve months of rigorous and painful physical therapy. Even today I continue to struggle to regain my health.

This set of circumstances forced the NFA, like many other companies and particularly nonprofit organizations, to undergo a period of transition and reorganization, including staff layoffs and cut backs on major programs and services. Like many other nonprofit organizations that were adapting to our country’s economic environment, the NFA also adapted and made changes necessary to continue to fulfill the key elements of our mission by focusing on retaining the programs which would help the largest number of the FM community members. In doing so some of the personalized and individual help we had been able to provide people in the past had to be cut back or eliminated. Unfortunately, this might have made it appear that we were not concentrating on and responding to the specific and individual needs of people with FM.

Over the past seven months we have realized that you have many questions and concerns about the NFA. Had it been our choice, we would have shared this information with you, the FM community. However, we were bound by legal constrictions and agreements of confidentiality to wait until we had developed a plan that would satisfy many of our financial problems. Foremost, we felt that it was important for us to make sure that people with FM would have the NFA and other organizations available to continue to serve the community. In order to make sure that would happen, we had to stay within the bounds of these legal constraints. We can assure you that no matter how bleak the situation our dedication to continue the work that we started so many years ago never wavered, and we have had to make some of the most difficult decisions we have ever had to make in order to assure our survival.

We are now pleased to share with you that we have reorganized and developed a new plan that allows us a platform upon which we can move forward. We are very excited that we have been able to accomplish this reorganization in such a short period of time. We believe our work will continue to benefit people with FM and allow the NFA to serve the FM community in a restructured format. In order to meet the needs of FM patients, the NFA has shared their programs and assets with other nonprofit organizations that are committed to implement some of the programs that the NFA previously developed and implemented.

Fortunately, even before we experienced the impact of these changes, the NFA had planned to subdivide and receive help implementing certain programs through its Leaders Against Pain (LAP) program. The participants of the LAP training and the members of the Leaders Coalition were going to help administer local advocacy, patient information, FM awareness and media outreach programs. The economic crisis forced us to enact this plan of action ahead of schedule and identify key leaders to help us in this endeavor. Jan Chambers, a LAP graduate and the Director of the NFA Coalition is also the founder and President of a Utah 501 c 3 nonprofit organization, the Center for Understanding, Education, and Research of Fibromyalgia (CURE FM). She was a prime candidate and a passionate supporter of the FM community who came to us volunteering her time and expertise. Recently her group was renamed the National Fibromyalgia and Chronic Pain Association (NFMCPA), which has the capacity to represent the fibromyalgia community through high profile and public-awareness events, as well as to further become involved in research opportunities.

The NFMCPA will also work to ensure that an interest will remain in continuing to investigate FM’s relationship to overlapping conditions, such as irritable bowel syndrome (IBS), migraine headaches, interstitial cystitis (IC), restless legs syndrome (RLS), reflex sympathetic dystrophy syndrome (RSD), chronic pelvic pain, and other comorbid chronic pain disorders. Jan and her organization understand the importance of recognizing the connection of all of these disorders in assuring the best possible treatment outcomes for people with fibromyalgia. She is committed to educating the medical community and the patient community about the importance of recognizing and addressing each of these disorders in treatment regimens. Jan has already jumped into the FM advocacy arena by becoming involved in the national Pain Care Forum Training and Education Subcommittee, and she plans to use her knowledge to continue the development of the NFA Leaders Coalition.

The NFA and FMCPA will also collaborate with the American Pain Foundation, the American Academy of Pain Management, PAINWeek, Allsup and other organizations focused on fibromyalgia and chronic pain. We believe strongly during these difficult financial times that organizations must work in collaboration to meet the needs of our respective communities.

We encourage you to join us in supporting Jan and her team as they continue to grow the NFMCPA and its programs. You can visit www.fmcpaware.org for information on this year’s Awareness Day events and advocacy updates. On this site you will also find a fibro-friendly doctors list, support group information and other resources, including disability news, research highlights and advocacy updates. We look forward to working with the NFMCPA, and sharing our years of experience and network of supporters.

The NFA will be available to support the FM Community and will continue to help improve the quality of life of people with FM. We are currently involved in several important media campaigns, implementing many continuing medical education programs, assisting and encouraging FM scientific research and providing information and educational materials for both the patient and medical communities. We are also dedicated to providing new opportunities for people with FM to participate in surveys and registries that will make an impact on the future direction of research and treatment development.

Even through these difficult times, we continue to provide services to help hundreds of thousands of NFA constituents. Although our normal communication channels were restricted during the past couple of months, we continue to bring our supporters information about our programs through our website, monthly newsletters, e-alerts, patient seminars, continuing medical education curriculums ,Webinars, radio blogs, Facebook and other social media outlets.

We ask for your continued patience and support as we move forward. The NFA, as always, is committed to working on behalf of all of those affected by fibromyalgia and to helping improve their quality of life.

Sincerely,
Lynne Matallana
Founder and President

It’s been one of those weeks.

One of those weeks when all I have wanted to do is shut myself up in my room and lose myself in books, movies, and God willing, some good sleep. It is my (and I am sure most of our) default position to “retreat” and isolate when I am feeling bad. And it is a desire I have given in to many times throughout my illness.

But I have noticed something.

I have noticed that by staying present and showing up for my life and my responsibilities, I am frequently rewarded with beautiful distractions from the symptoms that would otherwise consume me.

This has been an incredibly high pain week for me. In the past my pain would have been the reason for not moving, but I am in yoga school now, and I cannot make the decision to isolate myself without making the decision to miss the instruction I find so deeply rewarding.

Tuesday

So Tuesday morning I dragged my stiff, aching body to an 8AM yoga class. For ninety minutes I moved, stretched, and warmed my body from the inside out, and while still very much present, my pain became more tolerable.

But then the class work began, and for three hours we sat discussing the philosophy of yoga. Several times throughout the day, as my body got stiffer and stiffer, I told myself “Just go home.” But I stayed. I stayed because I knew my misery would not change if I were home alone with it, and I very much wanted to be present for the lessons of the day. So I stayed.

We ended the day with another 90 minute yoga session, and while still experiencing pain, I was better than I had been in the morning – and much better than if I had stayed home all day focusing on my pain.

Wednesday

Wednesday evening we had a support group meeting. I started our local group because I understand the need for community – the need to connect with others who understand how you are feeling. But I was miserable, and did not want to go. Yet at 6:30 I found myself there, surrounded by other members having an equally bad day (week, month). We ate and talked and had a really great time – the very best reward for making the effort and commitment  to show up.

Thursday

Thursday was much the same as Tuesday – yoga class all day. In my mind Wednesday evening I was preparing the email I was going to send to my instructor, explaining why I was not in class Thursday morning, and yet Thursday morning came, and there I found myself – stretching and moving with my fellow classmates.

After our morning practice, we sat in a circle and did what my teacher calls “checking in.” Each student takes a minute to share where they are and how they are feeling about their practice. I sat and listened as student after student shared what drives them and motivates them in their practice – what inspires them to keep showing up. Again, I was deeply humbled by the universal nature of suffering.

From divorce and custody issues, to the death of a parent, to abuse and addiction, to just generally being lost about the purpose of life –  there was a lot of pain being worked out and worked through in that room. After everyone had shared we sat silently, absorbing the beauty of the moment, and then my teacher asked, “How many of you feel better just by being here today?” Every hand in the room went up.

Community

On FibroHaven’s Facebook page I wrote this: There is nothing I can do alone that isn’t infinitely improved with the support of community. I founded FibroHaven on this belief: Community is everything. I directly attribute my growth and healing to the strength I gain by surrounding myself and connecting with those in the communities I have chosen to be a part of. Most people in my yoga community do not know I live with fibromyalgia. It is not important that they do know. I have my support group for that. What is important is that I have found (or created) communities that nourish and sustain me, and most importantly communities that inspire me to keep showing up.

What motivates and nourishes you?

What do you love? Where do you find community? It doesn’t have to be through yoga. And some people even shy away from support groups. But each of us has something that we love and that inspires us. Is it reading and discussing books? Check out your library for a local book club. Is it knitting? What a great way to spend some time, knitting and sharing patterns and design ideas with like-minded people. Do you love your church? Maybe there is a committee you can volunteer for. Or if you are interested in volunteer work, find a cause you are passionate about and volunteer for them.

There are days when yes, it is best to honor your body and rest. But I think we have all experienced the days when somehow we managed to show up to a scheduled event, and were rewarded for doing so with laughter and a lighter heart. You walk into a room and see a familiar smile, and your face feels lighter. You hear a familiar laugh and your heart warms. We need community, even if only for a much needed and welcomed distraction from the reality of living with chronic illness.

Friday

Today is Friday, and my pain is better. Showing up this week did not make me worse or increase my pain. Showing up this week nourished me, and encouraged me to keep showing up. That is what community does.

In Tips for Easing Fibromyalgia Pain Naturally, I shared an excerpt from Shoosh demonstrating her Healing Breath Technique, and then in Book Review: Yoga for Fibromyalgia, I shared with you her wonderful philosophy and structure for the book, and was pleased for the opportunity to partner with her publisher Rodmell Press in giving a copy away to one lucky commenter.

And now I am happy to share that healthy living for women website, Lifescript.com, has posted a great article on Yoga for Fibromyalgia – Need Fibromyalgia Pain Relief? Try Yoga. The article discusses the benefits of yoga for fibromyalgia and breaks down a sequence of five seated poses directly from the book.

Each of the five poses are broken down into how to set up and get into the pose, how the pose benefits you, and cautions for any pain or discomfort. They even include one of my favorite poses – the seated belly twist!

What a great way to get access to this wonderful book and gently incorporate yoga into your daily routine. It is just a small sample of the beneficial information and poses in the book, but a very good introduction.

As I continue towards becoming a certified yoga instructor, I know this book will be one of my tools to help me share the loving and healing benefits of yoga. I love Shoosh’s philosophy and her gentle reminders to listen to our bodies and honor what we are feeling. I will carry that wisdom with me into each class that I teach.

I have learned many things so far on my path, and the one lesson that appears repeatedly is that this is a process.

Healing takes time, and although I am caring for myself better than I ever have, there is still an unpredictable nature to fibromyalgia I cannot avoid. Setbacks, sidesteps, and distractions are all part of the process. That is an important point to emphasis – they are PART OF THE PROCESS. They do not separate me from the process, but they do challenge me to redirect my focus and discipline myself to get back on track when the distraction has passed.

The retreat I attended took place at a beautiful desert center in the community of Joshua Tree – the same Joshua Tree that inspired U2′s fifth album. The setting was beautiful and serene and COLD! Each building at the retreat center was designed by famed architect Frank Lloyd Wright. Wright designed buildings in a way to bring the outside in, meaning there were lots and lots of uncovered windows giving a sense that we were sitting in nature rather than a in building. Beautiful and quirky yes, but the design also made the rooms drafty and cool.

Our first evening we settled in the great room by the cozy fireplace for a restorative yoga practice. I chose an unfortunate place to lay my mat, and within 5 minutes I began flaring up from the cold draft hitting the back of my neck. I moved my mat to a more comfortable spot closer to the fire and was able to really enjoy the practice, but the damage was already done. I was in a flare.

One of the things I love most about yoga is the gentle way it warms my body from the inside out.

It is like an internal heating pad! And for a person with a regulated central nervous system, this internal warming would have corrected any discomfort caused by the cold draft. But for me it was too late.

I lay in bed that first night unable to sleep because of the extreme pain in my neck and head. The house started buzzing early that next morning with energy and excitement so I got up to join in. In truth I was pretty miserable, but I did not want to shut myself off from the other amazing women who were a part of the retreat. I was drawn to the buzz of energy and sound of laughter.

The last thing I wanted from this retreat was to experience a flare while I was there, but I chose not to let it become the focus of my experience. Instead I tailored my experience around it.

I participated in the gentle morning yoga practice but skipped the active evening session. I made sure I had plenty to eat and drank lots of water to keep hydrated in the dry desert air. And I accepted the help when my massage therapist friend generously offered to work on my neck. Massage is something I have resisted for some reason, and oh how silly of me! The tension in my neck was so great from the cold draft that my left eye was twitching uncontrollably. She was able to release the tension and helped me to assure my flare would be shorted lived and that I would be able to enjoy my remaining time at the retreat. I also credit my regular yoga practice for decreasing my flares and recovery time.

Today I am in what I call the “hang-over” stage of a flare.

The worst is over, but I still need to be mindful not to over do it and re-trigger. I know the gentle yoga sessions helped me, along with the wonderful massage, but in truth the thing that helped me most was the friendship and community I felt there.

I had the option of staying in my room to rest and recover, but instead I chose to interact with the wonderful women there. Their kindness, sharing, and laughter restored me and helped me remember I do not suffer alone. I was the only woman at the retreat with fibromyalgia, but each woman there is dealing with her own type of suffering – depression, addiction, abuse – and their honesty and bravery inspired me. I felt safe and understood amongst them.

It was unfortunate that I experienced a flare while at the retreat, but in a way it opened me up even greater to the experience, and because I was open about how I was feeling and did not try to hide it,  it became an avenue for others to share their own pains and struggles.

It is so humbling and empowering to recognize that we are not unique in our struggles, and most especially to recognize that we are not alone. We all live with our own particular pains and suffering. It is how we deal with those pains that either separates us or brings us together.

When I think back to the days after both traumas – the first that triggered my fibromyalgia and the second that exacerbated my symptoms – I clearly see that my eating behaviors contributed to my dis-ease.

Before the first head trauma I had what I consider healthy eating habits. But as soon as I became couch-ridden, trying to recover my ability to speak coherently, I turned to food as a source of comfort. I jokingly say now that I was “medicating myself with mashed potatoes.” But really, it was the truth. Overnight I lost – was forced to give up – so much of my life as I knew it, but the one thing I could still do and not cause myself more pain or distress was to eat.

Eating became the one thing I still had control over.

Food became my comfort, and in a way gave me a sense of empowerment during a very vulnerable period of my life.

Eventually I made my way off the couch and back out into the real world, but with each flare I returned to this behavior. “Can I get you a glass of water?” my husband would ask me trying to help. “Yes.” I would reply, “And some potato chips.” Flare after flare, this was the pattern. At the time I did not make the connection, but with time and healing, it is painfully clear to me now.

No longer was I nourishing myself with foods that sustained me, instead I was stuffing myself with foods that depleted me. My new eating behavior did not cause me to develop fibromyalgia, but it did contribute to my overall pain, fatigue, and mental fog. It did prolong my flares, and it most likely is going to make my recovery more difficult. I actually was causing myself more pain and distress without realizing it.

But I forgive myself this lapse in food judgement.

My mashed potatoes and potato chips actually did bring me comfort on some very dark days. Would I ever go back and deny myself that comfort? No. But I would share some of my new wisdom with that me, and love her and forgive her if she was not ready to hear it.

Food matters.

And it wasn’t until my 13th year of illness that I started to acknowledge how much food matters. When a very wise doctor recommended I would feel better if I eliminated gluten from my diet, I walked out of his office and that day became gluten-free. I was ready for the change. I was strong enough that I could let go of my attachment to food as comfort. And he was right. Within three short days I was feeling better!

The pain in my hands that had me convinced I was developing arthritis was gone! The debilitating head and neck aches I regularly suffered – never noticing that they occurred most often after mealtime – happened with less and less frequency. My hair stopped falling out!

So, if eliminating gluten could improve my health so much, isn’t it worth considering how other foods I eat are affecting me? And so the shift in me happened. And today I can happily say I have cut back on or eliminated many foods that deplete me and complicate my health – gluten, processed foods, fried foods, sugar.

I am nowhere near a saint, and I do still enjoy my comfort foods. In fact the other night I made mashed potato for dinner. But instead of butter and milk, I use greek yogurt to thin them out. And instead of pan-fried pork chops to accompany them, I grilled vegetables. And instead of needing the mashed potatoes to comfort and sooth me, they were just a tasty part of my meal.

So when someone asks me if curing fibromyalgia is a simple as good nutrition I say absolutely – No.

Fibromyalgia is a neurological disorder, and there are many component of FM that nutrition will not address, but good nutrition can help improve many of the symptoms that are a part of fibromyalgia – poor sleep, fibro-fog, IBS, fatigue. It is not a cure. Currently there is no cure. But if good nutrition can reduce some of your symptoms and improve your quality of life 15, 20, 30 percent, then isn’t it worth a consideration?