There are times in this journey of mine that I am simply tired and depleted, and I have brief moments of defeat when I think – “What is this all about? Why do I bother? Who am I kidding?”
Sometimes they happen when, after several days of feeling good, I wake up in the kind of pain that is impossible to reason. Or they happen when I reflect on how long I have been sick, and how long it is going to take me to heal. Sometimes they happen for no specific reason at all. I just get tired of the work, tired of the journey, and I just want to stop.
But I don’t stop – for too long anyway. And the thing that propels me forward and makes me keep showing up is this – the moments.
There are moments in our lives, moments that when they happen make us say: “Ah-ha, this is it! This is what it is all about.” Sometimes they happen when I am on my yoga mat and all the pieces come together and I feel nothing but joy. Or they happen at a support group function when I see a member’s face transform from agony to acceptance over the course of the evening. They can happen in a phone call, or from an email, or an exchange on facebook. They happen all the time. We just have to be aware and present to receive them.
Yesterday I scheduled a last minute group meditation at the Chopra Center. It is something we do together once a month, but I missed the one earlier this month, so I scheduled an extra one just for me. As I was heading out the door, for a moment, I had the urge not to go. It had been a long day – 2 1/2 hours of yoga teacher training followed by 90 minutes of gentle yoga at the YMCA. I was tired, and could easily have stayed home, especially since no other members had signed up to go. But I showed up – for me – because meditation nourishes me, and I was pleased to be joined by another member at the last minute.
Group meditation can be powerful, taking you much deeper into your practice, but it can also create unique challenges. A few minutes after we were seated in meditation, a late-comer burst in the door, literally crashed into the chairs, and then took about 3 minutes to get settled. THEN the very loud band started playing at the nearby restaurant (end of summer festivities). AND THEN the very loud late-comer began snoring and snorting! At one point I had to focus very hard to keep from laughing out loud at the absurdity of it all!
It is the most distracted I have ever been during a meditation, and yet I still felt restored by it. Walking back to my car I realized I was not nearly as fatigued as when I arrived. I am certain I was not in deep meditation for too long because of all the distractions, but however much I did was enough. I am so glad I showed up. If I had stayed home I would have been feeding my fatigue rather than nourishing myself. And it was great spending some one on one time with a member who need some guidance.
So all in all, there were several moments last night to keep me going – and keep me laughing. I cherish those moments, and that is why I keep showing up – because you just never know when one will appear.
Six days ago, over twenty members of FibroHaven’s Facebook community began a 21 day meditation challenge. The Chopra Center is hosting the challenge, with the thought being, it takes roughly 21 days to develop a ritual.
From davidji, Dean of The Chopra Center University:
“Rituals are powerful behaviors. And when you combine ritual with meaning, amazing things happen – you get transformation. And transformation is a form of evolution. So by adding meditation into your daily set of rituals, it will effortlessly become a part of you.”
Each morning we wake up to a new guided meditation in our email inbox, and it has taken just six short days for me to appreciate, and even crave the meditations led by davidji. I think I am well on my way to creating a new morning ritual!
Todays meditation began with a body scan. This is an important and very powerful exercise we can all do daily. It does not need to be part of a meditation practice. On its own it is a great way to become present and in tuned with individual sensations in our bodies – good and bad. Often it happens that we acknowledge the pain and lose sight of the rest. A body scan will allow you to become aware of the parts of you that are quiet and comfortable, even in the most severe flares. If you begin your day with an active awareness and celebration of the good, it may just help to manage the other.
So while seated comfortably with my head phones in, I followed the gentle, almost seductive voice of davidji as he lead us in a celebration and exploration of our bodies. First, I celebrated my toes:
“How are my toes doing? How are my toes? Let’s celebrate my toes.”
I did not get past my toes and I was already smiling and joyful with this exercise. My toes felt good! Happy little toes! Happy to stretch and wiggle and slide across the cool, smooth surface of the wood floors. Who knew toes could bring such joy? (Besides my little Koko. She loves toes!)
As we proceeded to scan and bring awareness to our bodies from the toes up, I discovered more and more things to celebrate. I celebrated my feet for the stability they bring me – moving on to my shins and calves, on up to my knees – celebrating my knees for all their flexing and bearing, and for how hard they work. And on and on upwards. It was a magnificent celebration of my body – the same body that for so long has been the source of so much pain – physical, mental, emotional. Not today. Today it was a celebration.
Can you imagine scanning your body right now and finding things to celebrate? I hope you can. And if you cannot, please, try the day six meditation for yourself. It takes about 15 minutes from start to finish. It may be best to try it in the morning, but anytime you can find to sit down and meditate is a good time.
So today was a success, as have been the previous five day’s meditations. I am so pleased I signed up to participate in this challenge, and grateful to have you to share it with. And I would really like to know – what did you celebrate today?
As a fibromyalgia patient, what are your expectations when you arrive for your doctor appointments? Do you arrive prepared to work with your doctor on how best to manage the troubling symptoms of fibromyalgia, or do you arrive hopeful that he/she will have some treatment, some answer that will once and for all end your suffering?
One of the first things I tell new members of FibroHaven support group – above everything – we need to learn to be our own best health advocates. Fibromyalgia is a condition with no known cure. There is not, and likely never will be, a single approach to treat and manage the condition. Most doctors do their best within their limited resources in identifying and trying to treat each of the separate symptoms of the condition, but few are masters of treating the whole.
In their desire to bring you relief, you may leave with one prescription for pain, another for sleep, and still another for IBS. And when those fail to bring the desired results, or when the side effects are worse than the condition they are intended to manage, you start all over with a new prescription, and new hope that this time it will be the answer. And the cycle continues. Even for those whose symptoms are improved, and their days are made more manageable, the condition remains.
So our anger and frustration builds. We see doctor after doctor hoping this one can help – that one will know, and when they can’t, and when they don’t, we blame. We blame our doctors for not understanding, and we blame the pills for not working. We dwell in a state of feeling hopeless and misunderstood. We lose faith that it can ever get better. We become defeated, and in doing so our symptoms grow in strength and severity because we have relinquished our control. Fibromyalgia wins. We lose.
Can you see how depleting this continuous cycle of hope and disappointment can be?
It is this disappointment and incredible letdown that I believe can be alleviated if we reevaluate our expectations of the fibromyalgia doctor-patient relationship. Despite all efforts, our doctors are limited in the relief they can provide. If we understand this going in, and set reasonable expectations for what we hope to achieve under their care, we free ourselves to possibility rather than despair.
First, we must change our expectations of what a doctor can do.
A good doctor will partner with you and guide you to make the changes necessary to improve, but even the most fibromyalgia literate doctor cannot make this go away. Know this going in and you are much more likely to have a positive experience and partnership with the right doctor.
I did not start healing until I took control of my health out of a doctors hands. Once I understood they do their best, but their best is limited when it comes to fibromyalgia, I began to make the changes I needed to begin healing. Because I chose to manage my symptoms without the use of pharmaceuticals, my need and expectations of my doctor were reduce considerably.
I incorporated alternative medicine, finding tremendous relief from a holistic chiropractor. His treatment was unconventional in that he rarely adjusted me, but used laser therapy and also addressed my nutrition, introducing me to a gluten-free diet. He also worked to eliminate several infections I had including heavy metal toxicity.
Once my chiropractor worked with me to consider how nutrition played a role in how I was feeling (something, remarkably, I had never considered), I began to examine all areas of my life to see what changes I could make to begin living well with fibromyalgia.
I incorporated yoga to get moving again. I began meditating to help me find balance and peace amidst all the chaos of chronic illness. I became more active with my support group to connect with people who validate my feelings and experiences. And I began to improve. Slowly, gradually, I improved. But more beneficial than any physical improvement was my emotional improvement. I found hope.
By making these changes I took control of my health. A loss of control is something we all struggle with. When we give that control to our doctors, and they fail to make acceptable improvement in our lives, where does that control go? Do we keep giving it to others who, despite their intentions, are limited in their ability to help, or do we take it back. I say take it back.
Walk into your doctors office and let them know, I know you cannot cure me, but let’s see what we can accomplish together to make me better. Better than anyone, you can – and should – determine what is best for you.
A new study published in the August issue of Arthritis & Rheumatism finds that Fibromyalgia patients have greater connectivity in regions of the brain known to process evoked pain.
Researchers used functional magnetic resonance imaging (fMRI) on 36 female subjects – 18 fibromyalgia patients and 18 healthy subjects – to obtain their newly published results:
Our results clearly show that individuals with FM have greater connectivity between multiple brain networks and the insular cortex, which is a brain region previously linked with evoked pain processing and hyperexcitability in FM,” said Dr. Napadow. The research team found that patients with FM had greater intrinsic connectivity within the right EAN, and between the DMN and the insular cortex — a brain region linked to evoked pain processing. “In patients with FM, our findings strongly implicate the insular cortex as being a key node in the elevated intrinsic connectivity,” added Dr. Napadow. “Patients demonstrated greater DMN connectivity to the left anterior, middle, and posterior insula.” In the right EAN, FM patients demonstrated greater intra-network connectivity within the right intraparietal sulcus (iPS). Researchers found no differences between the FM and healthy control groups for the left EAN or the MVN.
Essentially what that means to us is that there is a new study demonstrating a diagnostic difference in the brains of people with fibromyalgia and how we process pain.
This study will need to be duplicated and reduplicated before we see any big changes in the diagnosis and treatment of fibromyalgia, but it is good progress. Not only does it add validity to fibromyalgia, but it could lead to a decisive diagnostic test for the diagnosis of fibromyalgia. This has been one of the greatest barriers we have faced in the acceptance and treatment of fibromyalgia.
Story Source:
Wiley-Blackwell. “Resting Brain Activity Associated With Spontaneous Fibromyalgia Pain.” ScienceDaily 30 July 2010. 1 August 2010
Recently a great conversation began on the FibroHaven Facebook page when I asked this:
What do you do when you are having a relatively good day, but suddenly hit a wall? Do you push through, or do you slow down and give in to it? There is a BIG brick wall looming just ahead of me. Can’t decide if I want to try and hurdle it or lay down before I smash my face into it! Let’s discuss. I would love to know how you manage.
There were many great responses that are worth taking the time to read. After reading them I knew I wanted to continue the conversation with a new blog post, and as often happens in life, I was further inspired to do so by my yoga practice today.
I was in a new class with a new instructor. This is always a thrilling and completely terrifying experience for me. Will I be able to keep up? What is their teaching style – gentle and nurturing or kick-butt boot camp style?
The teacher has a dramatic effect on your yoga experience and sets the tone for the entire practice. My favorites are the gentle leaders who guide with simple, clear directives and encourage everyone to honor where they are on that particular day. A good yoga instructor understands that our bodies can be different from day to day – even from morning to afternoon, and afternoon to evening. This is just one of the reasons why yoga – with the right instructor – is an excellent mindful movement for fibromyalgia. But I digress…
Just a few moments into my practice, I knew I had chosen the right class. He was gentle and clear, explaining how to elongate the spine while bending gently to the side. With my eyes closed, I focused on his voice and his directions, and found new joy in a pose I have done many times. It was a great “ah-ha” moment and my body responded with pleasure.
And then he said something that I felt like a wave rushing through my entire body:
Find the space between pleasure and pain, and rest there.
I was instantly overwhelmed with the intention and deep meaning that statement held for me. Much deeper than the obvious benefit it was to my practice on my mat that day – it is something we can all apply directly to living well with chronic illness everyday. Read it again. Read it several times. Read it out loud.
Find the space between pleasure and pain, and rest there.
How does it make you feel? For me, I felt empowered – empowered to know that space exists and empowered to know I was learning how to find it.
The space between pleasure and pain. This concept is difficult for the fibromyalgia sufferer. It is a space many do not know how to reach. And even if we do reach it, we may not be able to appreciate it, as we have become conditioned to brace ourselves for the next surge of pain. Admit it, some of you think finding this space is as likely as finding a unicorn there when you reach it. Right?
But this space is real. It does exist. We just need to learn to quiet ourselves long enough to find it, and then trust it enough to relax into it. It is like finding the silence between our thoughts with meditation – the silence is there, we just have to learn to find it. It takes effort. It takes practice. It requires mindfulness. But it is real.
Rest. A simple word that is a difficult concept for those of us living with chronic illness. Often we are forced to rest, and it is anything but restful. Then, sometimes we chose to rest, but we are distracted by all the other “more productive” things we can be doing with our time. We fail to see how productive resting truly is.
Like all mindful approaches to living, embracing and living in the restful moments is a process. It takes work. How ridiculous does that sound? It takes work to learn how to rest. I wrote it. I believe it. And it still makes me chuckle reading it.
In general, our culture does not embrace rest. We have been conditioned to make the most of every moment. Multitask. Leave no stone unturned. But what bad could possibly happen by leaving a few stones be while you embrace the joy and restoration of rest? Really? Why can’t we learn to love the silence and enjoy the rest?
We can, but it is going to take work – and practice. We have a lot of conditioning to undo. And it is not going to undo itself. Through yoga and meditation – I am starting to come undone. I am unraveling and letting go of the tension I held so rigidly to for years. My space between the pleasure and the pain is growing and I am learning to rest there. I am learning to embrace my chosen moments of rest, rather than wait for the brick wall to force me into it.
You have that space too. We all do. Even on the days when you are certain it does not exist, it does. If you believe it, you can begin to find your way to it – and rest.
