Today is a day of recovery for me. Most people do not attend a restful and healthful three day yoga retreat and then come home to recover, but such is the nature of life with chronic illness. Yet I will welcome this time of recovery over and over again if it means I can continue on this path to wellness.
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.
There is some debate among patients of chronic illness whether nutrition is a contributing factor to our illness. I can only speak to my truth on this matter, and for myself it is an emphatic yes.
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?
Fall is the perfect time for comfort food, and if your meal can be comforting and healthy all the better!
Since going gluten-free over a year ago, there have been very few sandwiches on my menu, but then I discovered Johann’s Bakery. Johann’s is a 100% dedicated gluten-free facility in Vista California, where they bake 100% gluten-free breads. If you have ever eaten pre-baked gluten-free breads you understand they are generally disappointing. Not Johann’s! Think high quality artisan bread – soft, firm, with a pleasing taste and texture. Delicious!
So this was dinner last night.
I have been eating a meatless diet for the past several weeks. The traditional yogi diet is vegetarian or vegan. Growing up in a meat-and-potato family, meat has always been the cornerstone of most meals I prepare, especially dinner. I have easily embraced a meatless diet and am enjoying exploring the many vegetarian options for meal planning.
I found the recipe for this amazing Pumpkin Miso soup at The Veggie Table. They have many great recipes, including several pumpkin offerings – perfect for the fall holiday season.
For the grilled cheese sandwiches I sliced a fresh vine-ripe tomato and used a combination of swiss and cheddar cheese with just a little butter to help brown the bread slices.
There is a difference of opinion among vegetarians about the consumption of dairy and eggs. Some believe as long as you do not eat meat, you are considered a vegetarian. Others believe if you eat eggs and dairy you cannot call yourself a vegetarian. Personally, I am not concerned about the label “vegetarian” and choose to continue eating eggs and dairy.
I made the decision to eliminate meat from my diet for many reasons – health, environment, animal cruelty – but the primary reason for my decision was food preference. As I mentioned, I grew up in a meat-and-potato family. I married into a meat-and-potato family. I ate meat for 41 years because it is all I have ever known, but I have always had an underlying distaste for meat, in fact sometimes it just completely grossed me out!
I have never been comfortable with handling raw meat, especially raw chicken. I would use tongs to avoid touching the meat and make faces as I cut and seasoned it. Often it would carry over to my eating experience. I think intuitively I have always been a non-meateater. In fact when I told my mom about my decision to stop eating meat, she told me that if I had been allowed to follow my food preferences as a child I probably never would have eaten meat.
It took me 41 years to embrace my personal food preferences. Going gluten-free was out of necessity and my health has improved as a result, but eliminating meat is a personal choice – although there are also tremendous health benefits to this choice. The main thing both changes have reinforced in me is that food matters.
At some level we all intuitively know what foods are best for our bodies, we just need to be self-aware enough to listen to our intuition. You do not need to be gluten-free or a vegetarian to be mindful of what you eat. Just eat real food that nourishes you and eliminate or reduce what does not. It is that simple.
Miso Soup with Pumpkin and Onion
Yield: 2-4 servings
Time: 30 minutes
Tools: Medium saucepan or wok with lid, Wooden spoon, Small strainer
Ingredients:
2 T peanut or canola oil
1 medium onion, thinly sliced
2 t curry powder (optional)
2 c or 3/4 lbs fresh pumpkin, peeled and cubed
4 c vegetable stock
2 1/2 to 4 T miso
3-4 shiso leaves shredded or 2 T cilantro chopped
Directions:
Heat oil over medium heat. Add onion and sauté, stirring frequently, until translucent, about 5 minutes.
Optional: add curry powder and sauté for 30 seconds more.
Stir in pumpkin, then add stock. Bring to a boil, cover, lower heat, and let simmer 10-15 minutes, until pumpkin is just tender.
Place miso in strainer, lower into soup, and use spoon to force miso through into the soup.
Remove from heat, stir, sprinkle with shiso or cilantro and serve.
It has been too long since my last Things I Love post, which is ironic considering I am in the midst of one of the most loving times of my life and this is my place to write about all things I love. The time I am spending focusing on my health is restoring me, but I have missed writing here. I am determined to find a balance and get back to one of the things that has always centered and nourished me – writing.
Writing is a passion I can always remember having. When I was a young girl we lived in a very old house. My bedroom walls were covered with many layers of wallpaper. On a particular wall in my room there was a small hole hidden under the thick layers of wallpaper. I would sit and write letters about my inner most thoughts and feelings, and then I would neatly fold my letters and tuck them deep inside my bedroom walls. Thought after thought, and letter after letter rested inside those walls. For all I know the letters are still there.
Each letter I wrote helped me to release my fears, anxieties, and depressions. They gave me hope and made me feel connected to a source greater than myself. I always felt powerful and connected after writing my letters, although at the time I could not have expressed who or what I was connecting to. In fact I would address my letter to the unseen and all-knowing To Whom it May Concern. It gave me a sense of comfort to believe that there was someone/something that was concerned.
When I began this blog just over two years ago, in a sense it became that little hole in the wall for me – my space to share and process all my thoughts, fears, failures, triumphs, and epiphanies. And each of you became my To Whom it May Concern. And to my surprise my letters did not sit unnoticed. You took notice, whether you responded with a comment or a personal email, or even just read my letters and moved on, you have been here and given me the strength to continue writing. It has been a beautiful thing in my life, the catalyst really for my healing, and I thank you!
So when I am asked by FibroHaven members if I think they would benefit from starting a blog, my answer is always an emphatic YES! Whether you are passionate about writing or not, it is one of the most therapeutic things we can do. The benefits are endless.
From Health Benefits of Journal Writing, by Felice Willat
Marlene A. Schiwy, in her book A Voice of Her Own, talks about the healing dimensions of journal writing: “To create wholeness in our lives is to heal ourselves. Healing comes from the same root as whole and holiness. It is the attainment of wholeness of body, mind, emotions and spirit. For many women, The journal provides a gentle setting in which healing can take place. It offers one place where literally and symbolically, all of the pieces of one’s life finally come together.” And Lucia Cappaccione, author of The Well Being Journal, recognizes that illness can be a great teacher from within. “The most important message I learned from my disease is that the healing process is activated by a spiritual force that resides within. A journal can be a ‘living textbook’ for learning the lessons that the illness has to teach.”
I have learned so much about myself over the past two years of blogging about my illness. This is where it all began. FibroHaven – my little hole in the wall!
Whether you are inspired to begin a blog, or simply take up journaling, I encourage you to write, not just about your symptoms and your daily activities, but primarily about your inner thoughts and feelings. Research has shown that writing about your experiences reduces physical symptoms in patients with chronic illnesses, and isn’t that the goal for each of us. You find yourself here reading my thoughts because you are actively looking for ways to improve your quality of life. So – sit down, make yourself comfortable, and write about it!
It has been nearly two months since I started my yoga teacher training program and I have learned so much.
The Benefits:
Yoga heals. A recent study on yoga for fibromyalgia conducted at Oregon Health & Science University confirms what I have been experiencing since beginning my yoga practice 18 months ago – “yoga appears to assist in combating a number of serious fibromyalgia symptoms, including pain, fatigue, stiffness, poor sleep, depression, poor memory, anxiety and poor balance. All of these improvements were shown to be not only statistically but also clinically significant, meaning the changes were large enough to have a practical impact on daily functioning. For example, pain was reduced in the yoga group by an average of 24 percent, fatigue by 30 percent and depression by 42 percent.”
Yoga is a joyful practice, and the results are undeniable as is clearly demonstrated in my own personal experience and the above referenced study. I cannot say it enough. Yoga heals!
I can, and am getting better! I am not only feeling physically stronger, I am also feeling mentally and spiritually stronger. I have hope. I have joy. I have peace. I have a new love and enthusiasm for life that I have not experienced in many years.
We are not alone in our suffering. One of the unexpected benefits of the teacher training program is the camaraderie I have found with the other students. Suffering is not unique to fibromyalgia, and the program has reminded me of this. Each of the students was drawn to yoga from a different need, and listening to the stories of others has helped me understand how universal suffering is, which has allowed me to let go of the limiting belief that anything I am experiencing is unique or unusual.
I do not have to accept the level of suffering I have been living with for 14 years. Suffering is found in more than just the physical manifestation of FM. It can also appear as self-judgement and criticism, guilt and regret, isolation and silence. These are all conditions we create in response to our illness, but they are also conditions we can change. As we being to improve our mental and emotional suffering, our physical suffering improves naturally – and vice versa. Love yourself. Be kind and gentle to yourself. Embrace your body’s natural ability to renew and restore. It can and it will if you nurture it properly. You are worth the effort!
The Challenges:
I still have symptoms and must remember to continue to listen to my body and honor what I am feeling. I experience so much joy in movement, but given the neurological nature of FM, it is possible and even likely to over do it and trigger a flare. It is not in the practice of yoga that I find myself overdoing it, but in the routine of my daily life. Because I have so much more energy and much less pain, it is easy to get carried away and take on too much. I do not want to slip back into the unhealthy patterns that lead up to and contributed to the severity of my FM – always on the go, saying yes to everything and everyone, never slowing down to enjoy the moment and breathe! But the good news is that when I do experience the symptoms of a flare, they are shorter and less intense. I recover more quickly. I am hopeful that the 2 week and 2 month flares are behind me!
Taken in Sedona AZ after a 3 hour hike - something I could not have done just one year ago.
If I had to nail down the one thing that has benefited me the most, it would be the understanding that I can and do control my health. Fibromyalgia is a very real condition, but that does not mean it is a permanent condition. We have options, and there are things we can do and lifestyle changes we can make that will diminish the symptoms we experience. I have no idea if I will ever completely eliminate the symptoms I experience, but I am continuing to improve and better my quality of life. If I only improve to the percentages stated in the study above, that is enough improvement for me. But I believe I will improve much more!
As much as I want each one of you to experience the same improvements I am, I understand that we all must take our own journeys. Yoga may not be your exercise of choice, and that is okay, as long as you choose something that improves your health and slowly betters your quality of life. Did I mention it has taken me 18 months to get to where I am? It does not happen overnight, and it certainly has not been a straight line from my first yoga class to the teacher training program I am in today. If I had to map it out it would make us all dizzy! But there has been a lot of joy in the journey so far, and I have a lot of motivation to continue on, regardless of the obstacles and dangerous turns ahead.
Make the choice – choose to improve, choose an exercise you love, choose to feed your body the foods that nourish and heal, choose to love and forgive yourself, choose to love and forgive others, choose health. It is possible. The choice is yours!