Did you miss me?

This time of transition in my life has been trying to say the least. An emotional roller coaster would be a better way to describe it. One second I am excited by possibilities and the next second I am crushed with defeat. Sounds a lot like life doesn’t it?

It just so happens that a research study I was slated to participate in months ago started up last week. It is a local study on yoga and cognitive coping skills for the treatment of Fibromyalgia. I was hoping to end up in the cognitive group since I already have a good handle on the yoga, and  since the trials of this past month have left me in serious need of some coping skills. Fortunately that is exactly where I ended up.

Last week was our first session and we spent most of the two hours getting to know everyone in the group. Then we proceeded on to the first of the eight Pain Coping Skills we will be learning over the course of the study. Progressive Relaxation is a guided technique. While laying or seated in a comfortable position, we followed the directive of the study leader and proceeded with a focused tightening and relaxing of targeted muscles.

Starting from our heads and working our way down, we slowly and purposefully tightened and relaxed major muscle groups. It was a controlled and relaxing exercise. Before we began we rated several of our symptoms on a sliding scale – pain, fatigue, brain fog. At the end of the exercise we were asked to rate our symptoms again.

I think everyone agreed it was  relaxing and we all felt somewhat restored. But for me it did not elevate my pain. Some of my muscles that had been burning – like my upper back between my shoulder blades – did experience relief, but then other muscles where my pain was more sharp and focused seemed more painful after. It is hard to tell whether the pain actually increased from the movements or if I simply became more aware of it when the overriding burning pain subsided.

Our homework was to repeat the exercise twice a day listening to a DVD recorded by the lead researcher. My homework left me with the same experience. So I suppose I would say for me it is a good technique for burning pain, but not so good for sharp, stabbing pain.

This week we are learning a new technique, and so on throughout the eight weeks of the study. Their hope is that one, two or maybe even all eight of the skills they teach us will help us and be implemented into our daily routines. That is my hope too!

My second hope is that I will be able to continue on with the study after I have started working again. It is a possibility that it will conflict and I won’t be able to complete the eight weeks. That would be a disappointment, but I will worry about it when the time comes.

For now, I will continue on and report here what we are doing and whether or not it is helping me.

Do you have any experience with Cognitive Coping Skills/Behaviors? I would love for you to share your experience with it. Was it helpful to you? Do you continue to practice the skills you learned? Do you practice daily or do you target your practice depending on your symptoms?

FibroHaven is One Today!

One year ago today I sat down at FibroHaven for the first time and wrote this – Welcome!

In my very first post I shared what I hoped and intended to accomplish with my blog:

I have found the blogs I like best are the ones whose authors are aware they have an audience, yet they speak with a realness and simplicity.  They are authentic.  I image if I met the author they would be exactly as they sound on their blog.

That is the approach I hope to take in my writing.  I want to be real.

One year later I think my blog is exactly as real as I was hoping it would be and so much more.

I had no understanding at the time of the relationships I would form and the people who would reach out to me because something I wrote made an impact on them. I knew there was a need for a positive voice in the Fibromyalgia community, but I had no idea how much it would come to mean to me to be that voice.

My heart, soul, love, hope, spirit, and joy are in this blog. I doubt that I have ever been more proud of a personal accomplishment. Maybe that game winning home run I hit as the only girl on my little league baseball team. That was pretty cool! But seriously, FibroHaven is my baby.

Every time I read a comment like this from a recent post, I know I am doing what I am meant to do:

Thank you so much for sharing! I have only recently realized how important it is to reach out to those around me instead of hiding. I’m not weaker as a result of my illness. It is people like you that have helped me realize this. -Terri Simmons

Heart warming!

I have changed so much over this past year, and I doubt any of it would have occurred without this blog.

• I am more accepting of my illness
• I understand that I need to be my own best health advocate
• I understand the value and importance of researching every possiblity
• I recognize that there is no quick fix, no magic bullet
• I do not blame anyone or anything for my current state of health
• I have become more mindful of how my lifestyle choices contribute to my wellbeing
• I have a new spiritual awareness through yoga and meditation
• I am more in tuned to my body and my environment
• I am hopeful
• I feel loved
• I believe with all my heart that I will continue on this path to wellness and one day be symptom free
• I accept that there will be setbacks and obstacles, but that progress is still being made

If I had to give a number to my symptomatic improvement over this past year, it would be about 15%. Fifteen percent better than I was one year ago today. Wouldn’t you take that? Using the most basic of math, and not taking any variables into account, if I continue at a “15% a year” rate of improvement, I will be symptom free in just under seven years. After 13 years of living with a range of Fibromyalgia symptoms, seven years is acceptable to me.

But I don’t believe it will take seven years, simply because I cannot ignore the variables. If I had to give a number to my emotional and spiritual improvement (the variables) over this past year, it would be 60%. I am happier and more hopeful than I have ever been. I am at peace with who I am, and excited about who I am becoming. And I contribute the work I have put into FibroHaven for guiding me into who I am becoming.

I have put the work in, and I will continue to do so. I will continue to share and relate my experiences here. Some you will relate to, some you will not. But by taking the time to research and read, you are becoming your own best health advocate. Knowledge is power.

Thank you all for reading and commenting here. You are a big part of the reason I am feeling so loved and hopeful.

Change is a constant.

We all know that. So if change is constant, the only variable then is in our ability to adapt.

I was watching the Amazing Race Sunday night. It really is an interesting study on human nature and the ability to adapt to constant change – to the unknown. It is remarkable how certain temperaments rise to the top as they excel at adapting to unknown situations, while others battle themselves and their own teammates while flailing wildly at the unknown.

The ever important clue box is a great example of what I mean. Teams are given a general direction and told “that is where you will find your next clue.” So each team approaches the area not sure exactly where they must go.

Some teams calmly read their directions for more clues and talk it through, looking around together until they spot the box.

Other teams divide up to cover more ground, keeping each other updated and staying connected with their voices.

Then there are the teams that run around wildly yelling at each other, oblivious to the details of their surroundings. These are the teams that usually run past the box three or four times before spotting it. They are frantic and manic. They are out of breath, angry with each other, and completely out of tune with their environment.

For years my husband and I have joked we would make a great team on the Amazing Race. If I had to judge, I would say we would be most like the first team type – sticking together to take in our surroundings and find the clues. In fact, I am certain that is the kind of team we would be.

Change is not coming. Change is here.

Last Thursday my husband called me in the middle of his work day, except it was no longer a work day for him. After surviving many rounds of layoffs, this time he was the one terminated. He was calm when he relayed this life altering news to me. “Oh no, oh no, oh no, oh no,” was the only thing I could say. But he calmed me down and told me the one thing I believe to be universally true, “We are going to be okay.”

As soon as I slowed down long enough to recognize his calmness and listen to the truth in his words, I knew it was true. We are going to be okay.

Where we have been.

After the accident in late 2006, I tried to get back to working full-time, but my body could not handle the stress of it. My symptoms continued to worsen to the point that we both realized what I needed most was time. After much consideration, and resolving ourselves to the financial adjustments we would need to make, I quit working and have been focusing on my health and wellbeing ever since.

FibroHaven is the product of my time away from working, and I am so proud of what I have created – my blog, my support group, and my facebook community. It is through all of the FibroHaven components that I have learned so much more about who I am, why I have Fibromyalgia, and what I can do to improve my quality of life. I have a new spiritual awareness attained through the many mind-body practices I have introduced to my life, like yoga and meditation.

Each step of my journey away from work and with FibroHaven, whether I was struggling or succeeding, my husband was right there with me – taking it all in, and trying to interpret what it all means.

The time away from the stress of working has been a true gift to me. It has not been easy on our lifestyle. We gave up a lot of the comfort and luxuries that comes with two incomes. I am not healed, I am not cured, but I am better. Well enough that I know it is time for me to contribute again.

Strangely enough, something happened this week to reinforce that it is time for me to change my focus. Everyday I spend a lot of time on FibroHaven’s facebook page. It was a great complement to my blog, and a quick way to share timely, relevant links and Fibromyalgia resources. I was very happy with the work I had been doing.

Monday morning I shared my most recent blog post there, and then went off to my noon yoga class. When I came home and sat down at my computer I headed straight for facebook, but my page was gone:

The page you requested was not found.

It was like a shot to my gut – another loss. All that work gone. Disappeared! Sickening.

Today, I am kind of over it. Sad, yes. Disappointed, sure. But I recognize how much time and effort I spent on it and I realize that my time and effort are best suited elsewhere now.

You see I am part of a team, and my team has had a set back. But we are not out of the race. No way!

Where we are going.

We are not out of the race, because together we have calmly taken in our surroundings and recognized what we need to do to move on. My husband is a talented man. He will find work again. But in the meantime, I need to come off sabbatical and contribute. This means less time to spend on FibroHaven.

Not to worry. My blog is here to stay. I will just have less time for all the ancillary projects – like the now gone facebook page, and like my local support group. I am cutting meetings from two a month down to one, and I will be asking for someone to step up and assist me in running the group. There were also several other things I have been working on that will either not happen, or will have to wait.

Yesterday was our 6 year wedding anniversary. We spent the day focused and excited about our future. Change is here and we are ready to adapt – calmly, and together. I can’t wait to see where the next clue takes us.

In June I shared with you the announcement of The Fibromyalgia Wellness Project, a study to see if Fibromyalgia sufferers can easily discover simple modifications in their patterns of daily living to markedly reduced their symptoms. It was delayed due to scheduling and resource issues, but on Friday I received the announcement that it is up and looking for participants.

Dear Friends,

I am pleased to announce that the Fibromyalgia Wellness Project is now up and running and ready to receive participants. This is a research project sponsored by the National Institute of Arthritis, Musculoskeletal and Skin diseases, National Institutes of Health. Its purpose is to evaluate a new web-based self-management program that aims to help people with FM discover ways to reduce symptoms and improve health through a completely personalized self-monitoring approach that takes no more than 5 to 10 minutes per day.

In using this program you will create your own personal database of symptom patterns and self-management strategies that will be analyzed by the project’s proprietary analytical methods. After sufficient use (depending on how frequently you use it–we recommend at least four times per week), the program will provide you with personalized feedback about strategies that lead to reduced symptoms for you. The feedback you receive will be derived from your own personal inputs over time, which is why your on-going participation over several weeks is needed. This allows you to experiment with different strategies and lifestyle changes (e.g., bed times, meal times, self-help practices, exercise, stresses, herbs, supplements, medications, and more) to find out what works best for you.

Please go to http://www.fmwellness.org/index.htm to learn about the project and sign up.

We will be continuing to upgrade and refine the site in the coming months. I hope you find the project beneficial, and welcome your participation.

Best regards,
William Collinge, PhD, MPH
Principal Investigator
The Fibromyalgia Wellness Project
http:www.fmwellness.org

I remember the shock I felt when I first realized there is an emotional component to my pain. I have always been a joyful person. I smile often, and it is the kind of smile I feel deep in my heart. Despite everything I have been through and live with daily, I have always felt fortunate and happy for my life. I knew I had unresolved anger and resentment, that is how I found myself in therapy, but I had no idea that I had been physically storing it in my body for years.

It was several years ago now that my therapist tried to help me resolve my physical pain by dealing with my suppressed emotions. Ironically, her recommendation to me was to write. She believed that through the process of writing, my muscles would begin to let go of everything they had been storing. Unfortunately I did not get very far with her. Maybe I was not ready to hear her and understand then. Maybe the time was not right. But today as I sit here writing about it, I am so much more aware and accepting of where she was trying to guide me.

My muscles are full of emotions I have spent the last 40 years avoiding.

The pain is stored there because that is how I unconsciously chose to process it. I stuffed it deep down inside to avoid facing it, but it doesn’t just disappear, it simply manifests itself into a different kind of pain.

My muscles are inflamed and toxic because I did not have the skills to manage and deal with the crisis in the moment. Who does have the skills? They are not easy to acquire. I still do not have them, but I am working towards it. It may take me the next 40 years, but at least I am now aware.

Healing is not a simple process.

First we must really come to terms with the source of our pain. For the purpose of this post I am focusing on emotional pain, but as we all know there are many other components to our pain (trauma, infection, toxin, etc.) that make this process even more complicated.

So where do we start?

Again, there is no easy answer. Years ago I started in the most logical place, therapy, and yet it turned out not to be my actual starting point. I had years of stagnant suffering after that, waiting for my health to change, but not actively making the changes necessary for my health to improve.

Looking back on it now, I am learning from my time spent in therapy, but it made little difference in my life at the time.

My true starting point in understanding how my emotions have contributed to my pain is this blog. Writing here has allowed me to explore and examine myself in ways I never would have otherwise. It has allowed me to acquire new tools and resources to actively apply to my intention of wellness.

What does that mean?

Well it means I am no longer sitting on my couch with a tub of mashed potatoes, convincing myself that my misery entitles me to eat it. And it means that I am no longer waiting for better health to find me, I am actively seeking it out. And it means I am no longer discouraged by the many set backs, because I understand it took years for this damage to occur in my body, and it will take years for me to correct everything, but each step I take towards healing tips the balance to the path of wellness and a better life.

For me, the tools and resources I have acquired to deal with emotional pain are writing, yoga, and meditation. The combination of the three have given me a greater awareness of the mind-body connection, which I believe is essential for healing our emotional pain.

Yoga and meditation teach you to connect with and examine your body, scanning for places of tension and pain. They teach you to acknowledge and breathe into those places, and not ignore what you are storing there. It has been an amazing process of self-discovery, and both practices often leave me more emotional but less painful.

Writing is where I come to process everything. This is where I put the piece together and try to make sense of them. Without this blog, I am certain I would still be waiting for my health to change.

So how can you take what I have learned and apply it to your own path to wellness?

First, you have to be ready to take your journey. You have to be ready to do the work and the research to find the best tools and resources for you. Then you have to understand that it is a journey of endurance and not be discouraged by the inevitable setbacks. You have to believe that you are worth the effort and that better health is possible.

If you are not there yet, like I wasn’t not that long ago, keep reading, keep researching, don’t give up. Never give up! Better health is possible. Once you believe it is, your journey will begin.