Potential - Noun: Latent qualities or abilities that may be developed and lead to future success or usefulness.
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.
The month of May is recognized as Fibromyalgia Awareness month, with May 12th being the official Fibromyalgia Awareness Day. So what does all this awareness mean? And how is it really benefiting us?
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.
A good friend and very wise soul said to me the other day – “It’s awesome that you’ve got such a love for yoga. Although I have to admit it seems a little sad for FibroHaven that it is no longer the light of your life…I think the two (yoga and FH) will mesh together eventually.”
It is true that my current journey in yoga teacher training school is keeping me from the work I began with FibroHaven. I write less here, I share less on facebook, and I am scheduling fewer in person meetings. But my love of FH has not faltered.
The truth is, I am just doing what I frequently urge each of you to do. I am honoring myself, my body, and the unpredictable nature of this condition we all live with by not doing more than I can, and by not allowing myself to feel guilty for the things I am not doing.
I have always said it is important to me to let FH develop organically. The reason for this is because it allows for variance and change. I give all that I can in each moment, which means some moments I am here and present, and others I am quietly in the background, but I am never far.
And she is absolutely right. One way or another, my certification as a yoga instructor will eventually tie into FibroHaven. Maybe in the form of podcasts, or a DVD, or wellness retreats. I am not quite sure yet, but my love for FibroHaven is equal if not greater to my love of yoga. Both inspire me. Both make me feel complete. Who knows where all this is going to lead? I don’t yet, but even if it doesn’t look like anything much is happening, I promise, it is.
On March 12th I was happy to post a much anticipated update to the status of the National Fibromyalgia Association. From it we learned of Jan Chambers and her recently established non-profit The National Fibromyalgia and Chronic Pain Association, and of the several NFA programs that have been transfered and are now going to be preserved by the NFMCPA.
Because of the confusion and concern that remained about Jan and the NFMCPA, I reached out to her and asked if she would be interested in making a statement about the work she has been doing and about the future intentions of the NFMCPA as a resource for the fibromyalgia community. Happily she agreed, and her message is directly below.
Jan and I both agree, an open and honest approach is the best way to ensure trust and good will in our community. Jan is eager to do just that and is hoping you will take the time to read her story and comment about how you would like to be informed and involved moving forward.
Begin Message From Jan Chambers:
Dear Dannette,
Wow, where to begin? We’ve all been dealt a serious blow and felt grief at the NFA’s difficult news from the NFA President’s Message sent out on March 10, 2011. I’ve known about the situation for a few months, but it was not my information to share. I had to wait until the NFA decided to make their announcement public before I could speak publically. I wish them well in their new restructure and express appreciation for the good work they performed over the years.
I’m very happy that I am now able to share some wonderful news about a new organization called the National Fibromyalgia & Chronic Pain Association (fmcpaware.org). The NFMCPA will work for the continuation of certain important programs handed off to us from the NFA, such National Fibromyalgia Awareness Day events, Leaders Against Pain program, support group training program, Coalition, and advocacy. We (NFMCPA) are still under a little bit of website construction, but we’ve come a very long way in nine weeks. As the president of the National Fibromyalgia & Chronic Pain Association, I have the full confidence and endorsement of the National Fibromyalgia Association to revitalize and invigorate these programs that are now part of the NFMCPA. NFMCPA is an independent organization from the NFA.
The NFMCPA was designed as a place where people could feel at home and that they are a vital part of the community. Fibromyalgia is a unique illness that has overlapping conditions and chronic pain. People with FM know this, and my heart’s desire is to provide a place for education, advocacy, science, leadership, camaraderie, and healing to co-exist.
To understand the beginnings of the NFMCPA, it seems most helpful to start here:
When CURE FM (Center for Understanding, Research & Education of Fibromyalgia) was created in November of 2008, I was passionate about bringing science and people together to find solutions for fibromyalgia. I have FM and know how devastating it is to individuals and their loved ones. As a small umbrella organization, CURE FM was poised to work with those who need affiliation with a non-profit organization for the development of scientific treatments or support systems for FM. I re-purposed CURE FM to respond to the needs of the fibromyalgia and overlapping conditions/chronic pain community, and it will be known as the National Fibromyalgia & Chronic Pain Association. After I created CURE FM, I traveled extensively (35,000+ miles) over 19 months to learn from all segments of the fibromyalgia community. One element seemed important as I studied, and that is to address fibromyalgia as a unique illness with overlapping conditions and chronic pain.
With passion and love for this endeavor, I work closely with one full-time staff member, one part-time staff member, and I hired two skilled IT gentlemen in a local Internet Service company. My work has been fully voluntary, and my husband and I have financed the work to this point. I am very grateful that we were in a position to do this even though we are a middle class family.
The past nine weeks have been intense, and we have worked many late hours and days to prepare a home to welcome the transferred NFA’s programs and the fibromyalgia and overlapping conditions/chronic pain community. We tried a couple of different website formats before we found one that works for the NFMCPA. In the NFA’s organizational restructure, it was determined that the NFA would continue to develop CME programs and research. There will be overlap with the National Fibromyalgia & Chronic Pain Association’s work to educate and increase visibility for fibromyalgia. These are significant functions that underlie and support the FM community. There will be shared information as we embark on the important endeavors of these two organizations.
I am familiar with the several questions posed online recently, and I appreciate the sincere interest and concern shown. A response to those concerns may help, especially with regards to constituency contact (i.e., emails). Please rest assured that this is protected information, and they have been respected throughout this process. No e-mail addresses were sold to anyone, nor will they be. This was always, and continues to be, the policy of the NFA. It is also the policy of the NFMCPA. By law, the NFMCPA and the NFA have included an unsubscribe link on the emails sent to the recipients.
Sincerely yours,
Jan Chambers
Janet Favero Chambers, President
National Fibromalgia & Chronic Pain Association
fmcpaware.org
Architecture is the learned game, correct and magnificent, of forms assembled in the light. ~Le Corbusier
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