Friday, March 10, 2017

Developing A New Relationship With CFS

When my clients with CFS first meet with me, one of the first things we do is to shift perspective about the illness. When we have CFS, we have very, very debilitating symptoms. We are very sick. A common theme around those with severe illnesses is to fight...fight the symptoms, fight the disease.
I encourage my clients to stop fighting. I encourage them to develop a new relationship with their symptoms, and to start to understand that their symptoms are messages from their body.

This does two things. When we stop fighting, and fall into a state of non-resistance, of allowing, then we immediately turn off the stress response. Resistance and fighting only further work to increase symptoms, because they increase the outpouring of stress hormones.  When we shift our perspective from symptoms being an indicator of illness, to symptoms being helpful messages from our body, then we can start to gain some power and control over our symptoms. This immediately helps us to start to regain some control over our health.

This also requires a paradigm shift about how we view this illness. We have to put the medical model to the side, and shift into the stress disease paradigm. This is a challenge for those with CFS, because they think that if we are saying this, then we are saying the illness is "all in their heads". It most certainly isn't, those with this illness are very very sick.  I can say with certainty that all illnesses are in both the mind and the body. Any practicing medical doctor will agree to this. So if we can't treat an illness medically, then we have to look for different approaches to treatment.

I've made it my mission to bring this theory and treatment to the forefront of the CFS community, and I've been shouted down so many times. I suppose that is because recovery stories are rare, a relative anomaly, and people have a hard time believing that anyone has recovered. I've explained that it doesn't have to be that way, that there is a model for recovery that is readily available, and I've been shouted down and accused of trying to "sell something".

Be that as it may, I'm always reminded that people who have discovered or revealed the truth are usually dismissed at first. My hope is that one day the science will prove the theory that an overactive HPA-Axis is the cause of CFS/ME/FIBRO. Interestingly enough, some of the recent studies seem to prove this.

Monday, March 6, 2017

The TRPM3 Study

There has been a lot of excitement in the CFS/ME community regarding a recent Australian study that concluded that those with CFS/ME have a faulty cell receptor called TRPM3. The role of TRPM3 is to transfer calcium from outside the cell to the inside, and when this function is altered, then cell function is impaired. The TRPM3 receptors are found in every cell in the body, causing dysfunction in several different organs and systems in the body, which explains why there are so many varied symptoms, and different manifestations of symptoms in different patients. But the most important finding  is that is that TRPM3 receptors  are upregulated when the body is under any kind of threat (i.e. infection, trauma ). The study cites that it is the upregulation that causes the faulty genetic receptors to take over and inhibit the calcium transfer to a wide range of cells.

This is good news for people who are looking for a definitive diagnostic marker for CFS. There we have it, validation for illness, and this seems to be important for many in the CFS community.

But this is also good news for those of us who believe that CFS/ME is a stress related disorder. If we can tame the stress response, then we can repair faulty TRPM3 receptors, and our cells can resume
their normal functioning.

Like so many recent CFS/ME studies, this offers hope for people who want a definitive diagnosis, but rather than finding the cause of CFS/ME, this is simply another illustration of the effects of CFS/ME.


http://www.meassociation.org.uk/2017/02/the-science-behind-queensland-governments-cfs-breakthrough-statement-science-alert-22-february-2017/

Wednesday, February 15, 2017

Why Medicine Has Failed Those With Invisible Illnesses

When I was suffering from Chronic Fatigue Syndrome I was lucky enough to already have a doctor who was able to diagnose my illness fairly quickly. She was a functional medicine specialist, as well as a GP. Her treatment included acupuncture, supplements, and rest. She actually advised me to take a year long vacation. I tried all of these things, and more. Most of the things I tried were not from the traditional medical box, because I knew that medical doctors didn't have the answers to these illnesses. They simply didn't know. So I took my health into my own hands. I had a very strong desire to get well and get back to my life. I could think of nothing more disempowering (aside from the illness itself) than going from doctor to doctor, and subjecting myself to tests and diagnoses...I was determined not to become a professional patient with a long list of mysterious symptoms and inconclusive tests. It's probably my nursing background that led me to have this perspective...I had seen too many "professional patients" in my work, and I was determined not to become one.

When I tell people how I recovered, so many of them are skeptical. They cannot believe that I could recover from such a serious and debilitating illness with a simple mind/body exercise. I now coach my own clients, using the Energy-Flow Coaching techniques that helped me recover. When I explain to prospective clients how and what I do, many times the answer runs something along the lines of...
"but my body is sick...there is nothing wrong with me except for my illness...how can this work if my only problem is that I can't physically function?"...It's the same misunderstanding of the nature
of the illness that the medical profession has, and this is why medical doctors or research don't have the answers we're looking for.

Medical doctors approach illness from a biomedical model. They work within a paradigm  that views symptoms as a result of illness or injury. Most of their treatments revolve around treating symptoms using pharmaceuticals. This is wonderful and works well for most people. But for those with Invisible Illnesses, or Functional Illnesses, this doesn't work. This is why sufferers are left to cope by implementing what I call "extreme self-care", revolving around diet, supplements, rest, etc
When I was sick, taking care of myself, implementing and following self care techniques, was  a full time job in and of itself.

When we can step back and view these illnesses from a different paradigm, from the stress-disease model of illness, then we can start to understand these illnesses in a new light. When we view mind and body not as separate entities, as the medical paradigm does, but as a functional system that works together to enhance health or create disease, then we are on our way to a new understanding of functional or invisible illnesses.

Deep and true healing from these illnesses can occur, but only if we are willing to embrace a new view of our illnesses, and be open to taking the journey down the road of exploration and discovery into a deeper meaning of illness and health. In other words, when we develop a different relationship to ourselves and our illnesses, we can heal, grown and change on a very deep level.

Sunday, January 29, 2017

Why Medical Research Isn't The Answer

I follow many CFS groups on twitter, and the majority of them seem to advocate for  medical research. Indeed, many sufferers are "waiting" for medical research breakthroughs and lobbying
for more funding for research.  My suggestion to them was to study those that had recovered. What steps did they take to recover, what recovery looks like to them,  (i.e. were they able to return to their previous life, levels of activity?), and how long they remained in remission. Of course, this was deeply unpopular.

My suggestion was, and is, to do your own research. Find people who have recovered, chase them down, and find out what worked for them. Find out if their recovery is complete. And then take those same steps that they did! Be persistent, and focus your attention on recovery, rather than symptoms.

By nature, CFS is very disempowering. The symptoms are debilitating, medically unexplainable, and unpredictable. It's easy to fall into a "victim mindset", because it causes people to feel they have no control over how they feel, and they are physically and inexplicably unable to function in their lives. It's like some unseen and inexplicable force has drained them of their energy and physical resources. Peoples lives become smaller and smaller. Indeed, feeling powerless is part of the disease itself. What I find so often with other bloggers and sufferers is this...I have (CFS/ME/FIBRO etc) so I can't do the things I want/need to do. They start to identify with the illness, and live with the label as victim or sufferer, which only perpetuates and reinforces symptoms, and the limiting lifestyle that comes with them. Creating an identity around an illness becomes one more hurdle to overcome on the road to recovery.

It's my own opinion that medical research is a very long ways away from finding a cause and cure. Medical research focuses primarily on symptoms, rather than causes of symptoms...for example, there was a recent research study that showed that gut bacteria in CFS patients was altered, but the focus was on the gut, not on why gut bacteria was altered. (could it be because the gut doesn't work properly in people who have CFS ...rather than they are missing certain microbes in the gut?) Another popular study suggests that people who have CFS have mitochondrial dysfunction...so the focus is on mitochondria...but not why there  is such dysfunction. So if we are to follow medical research we could easily fall down the rabbit hole of gut microbe replacement, and mitochondrial functioning, without finding the true cause as to why these dysfunctions exist. In other words, medical research seems a long ways from finding a true cause for our illnesses.

If we can move forward with the theory that medically unexplained illnesses and symptoms are a disruption of the autonomic nervous system, and a disconnection between how the mind and body interact and communicate with each other, then we can empower ourselves by researching how mind and body work together, how the autonomic nervous system controls every aspect of our physiology,
(think gut function, pain response, mitochondria), and how we can reassert control over our symptoms, then we can empower ourselves with more knowledge about our own illness and well being than any outside medical source.

Which brings me back to why medical researchers should study those that have recovered. If they did, they could make huge research breakthroughs in how the mind and body interact to create disease and/or well being. But because medical research is so far behind in understanding the mind/body interactions, this could take decades. Those who are ill and suffering don't have decades to wait for the right research study to come along.

Wednesday, November 30, 2016

Love and Betrayal

Loving yourself is easy. So many people overcomplicate love! So many people spend years in therapy, and money on self-help books, trying desperately to "love themselves", and to feel deserving of self love. I would argue that you already love yourself. And listening to yourself is the key to self love. It's all in how we honor  and respond  to our deeper selves.
 

Loving yourself is about how you treat yourself. Do you block your emotions in order to protect your relationship with another? Do you take better care of your relationships than you do yourself? Do you sacrifice  yourself in order to maintain peace and harmony in a relationship? Do you listen to that silent whisper of self, telling you to find a new job, despite the ease and security of your current situation? Do you avoid doing things that scare you? When we do these things we neglect ourselves.
It's in these things, often difficult things, that we simply treat ourselves badly. Not for lack of self love, but out of fear. But when we do these things, we betray ourselves.

And what does love have to do with health? Gabor Mate, the author of When the Body Says No,
speaks eloquently on illness and betrayal of self. Disease, he says, is that part of you that really loves you, trying to get your attention, trying to guide you back to your real and loving self.

A few years ago I attended a workshop with a medical intuitive. He could "read" peoples illnesses simply by looking at their faces. Not only could he discern illnesses with an accuracy rate of 97%
( he participated in a research study verifying his abilities), but he could discern the emotional conflict that helped to create the illness.  All illness, he claimed, is created when we make decisions that are not in our best interests. In other words, resistance to self creates illness.I believe that when we mend our relationship with our true self, our bodies will often ( but not always) heal on their own.

There is more to health than genes and lifestyles. I would say the most important thing that we can do to stay healthy,  is to stay in touch with our true self, that communicates to us through our emotions. And, our emotions communicate with us through our nervous system. Being firmly present in the body, ( not the mind) helps us to stay in touch with our true, deep, and loving self.

Wednesday, October 26, 2016

Addictions and Awareness

I recently listened to an interview with the author of Addiction Unplugged, John Flaherty.  It was truly an inspiring interview, because he discussed a new way of approaching addiction, and really of approaching life, and it was all in keeping with my own work in recovering from CFS.

John spoke of life as being meaningless, until we ourselves give it meaning.  Life is just there. It's naturally giving, and naturally creative. And life, naturally, supports us. It just is.  Flaherty stressed that we don't need to make anything happen. In fact, it's all there for us. We only need to allow it to happen. So often we get caught up in the doing, the making things happen, the resistance and pushing against life, when it really is all there, laid out and generously, miraculously, giving us everything we need. As Flaherty points out, we don't even need to breathe. It is done for us.

After listening to the interview this morning.I decided to do an experiment in allowing life to flow. I had several errands to run,  and rather than performing them with my usual laser sharp focus and efficiency ( I usually try to get them done as quickly and easily as possible ), I decided to take some time and be in a state of allowing...of seeing what comes up. I found myself feeling so relaxed...I didn't have to make anything happen...and this is what I noticed. Everything was more..the produce section at the grocery store was more colorful than ever, the pumpkins on display outside the store were more bold and beautiful than ever, people were nicer, the stores were uncrowded, and as I walked up the street to do more shopping I was treated to a pop up symphony playing Beethoven in the neighborhood square. It was a beautiful day, and my awareness of the bounty and generosity of life was heightened ten fold.  All because I came with the attitude of simply being rather than doing.

 I've come to believe that many illnesses are caused by resistance. Of not allowing life to naturally flow, of struggling against the current. When we resist life, we are resisting our selves, and really our true selves. Have you ever heard of autoimmune diseases described as "the body attacking itself"? Oftentimes, we unknowingly attack ourselves, by being in resistance, rather than in flow, with our true nature.

But what I liked most about John Flaherty was his approach to addiction. An addict, and it can be any addiction, big or small, to alcohol, drugs, sex, the internet, is actually a "stuckness". It's being stuck in a compulsion.And when people are treated for addiction, they get "stuck" in recovery, forever. The addictive behavior stops, but the stuck energy behind the addiction often stays, which is why some people in recovery are labeled "dry drunks". According to Flaherty addiction is really a quest for the self. It's a deep desire to be, and have permission to be, your true self, to be the truest expression of yourself, and to leave your own unique footprint on life, which, until you give it meaning, is really just meaningless.  Many very severe addicts have been horribly abused and traumatized as very young children.  My own definition of trauma is something that interferes with you and You. It is anything that takes you away from your core, true self, without your permission. So when this happens at a very young age, one is lost, and out of contact and communication with the true self. The loving core essence of self. Addiction can be thought of as  the quest, really, for the energy, for the true, loving, abundant essence of self.

For my own purposes, I think so many illnesses are due to a loss of self, and can be healed by reuniting with the core, true essence of who we are. And after listening to Flaherty's interview, I have a new perspective on addiction. The addict inherently knows, that there is more, but is stuck. So recovery is to build a bridge, to cross over from the stuckness of addiction to the natural flow, and growth, and infinite abundance that is your own true essence.

Thursday, September 8, 2016

Dancing With The Mind

I've recently enrolled in a Mindfulness Meditation Class. I did this at the urging of one of my friends, and  with some hesitation. Many years ago I experimented with Mindfulness after reading John Kabat-Zinn's book, Wherever You Go, There You Are: Mindfulness Meditation in Every Day Life. I recall watching a documentary about Kabat-Zinn and his mindfulness class  as well.  Using his book, I practiced Mindfulness..which in my mind meant "paying attention to what you are thinking about". It drove me crazy... it literally made me want to jump out of my skin...I stopped, and continued with my own meditation practice, ( simply following my breath) and experimenting with various meditation CD's off and on over the years.

Mindfulness Meditation seems to have become big business. I think this is because there have been actual scientific studies done on the positive effects of Mindfulness, and now there seems to be a lot of funding for teaching mindfulness to school students. Because I'm me,  anything with "science" and "funding" is, well, to be questioned. Who benefits? Where is the money going? Where is the money coming from? Why this particular form of meditation which seems to be so focused on the mind?

I'm only a week into the course, so the jury is still out. So far the class material and practices have inspired me to question the mind. How we use the mind, and what the role of our minds in our lives really is.  Mindfulness is meant to distance you from your thinking, become aware of your thought patterns, and understand that your thoughts aren't you and they are not always true. Sounds a lot like Cognitive Behavioral Therapy, which has been the gold standard for psychotherapy.. again following scientific studies about it's effectiveness.  Both of these things help us to understand the mind, and maybe our relationship with it, but in my experience that is only the first step.

In our culture, thinking is king, and the mind , and it's place in our lives is overemphasized. When I was in school, I was specifically taught to say "I think" rather than "I feel". The reason being is that thinking gives, well, thought, more credence than feeling.

Thinking, I believe, is best for solving complex objective problems. The intellect can surf the waves of a multitude of interesting and complex issues, and the mind enjoys it! The mind likes to be busy! But when it comes to everyday life, feeling is key. When we think about our daily problems or even the problem with life, our minds start to create stories. It is the minds way of understanding pain. We start to rationalize everything we don't like, or don't feel good about. Our stories and rationalizations take root and grow wings, and on top of our pain and suffering, on top of the problem with life, we have stories. And then our life becomes the story. It becomes false and inauthentic, and adds a layer of fiction to smother the layer of pain.

I don't think it's necessary to pay much attention to our thinking. My fear ( one weak into a Mindfulness Course!) is that paying attention to thinking, avoiding thinking, being aware of your thinking, drives you up into your head too much. The real wisdom, the seat of the soul, the source of creative problem solving, is really in the body. When we let go of our thinking, and let our body lead, amazing things begin to happen, not the first being that we start to relax, and to trust the deeper, and real wisdom of our bodies. When I trust my body enough to  negotiate, and lead me through my day, amazing things start to happen. I live from a body-centered state. Meaning I don't think, and follow my thinking, I lead with my body. I listen to it. I have a relationship with it. Most of us have this relationship with our bodies that is very superficial. Am I too short? Too tall? Am I too fat? Too old? What kind of body do I have? We don't even think of our body as a vehicle or even a form within which our souls dwell.

What makes me most uncomfortable about mindfulness, and I remember this from my first introduction to mindfulness, specifically when I watched a documentary about John Kabat-Zinn and his mindfulness students, is that it seems to highlight human suffering. I watched his documentary twenty years ago, and I still remember the students that were featured. What I remember is their suffering, and suffering in the worst of ways. It made a huge impression on me. Because most of them were in circumstances that were not going to change, and were difficult to bear. And somehow, the magic of mindfulness was helping to ease their pain. I was skeptical.



When I was in nursing school I took a theology course called The Mystery of Suffering. Essentially, it was about why God allows us to suffer.Why newborn babies die, children get cancer, people are or become horribly disabled...how could  a loving God allow this to happen?  We see so much of it. We all suffer. It's part of the human condition, and my only explanation both then and now is that suffering is essential for growth. Anything that has made me suffer in life has spurned me on to more and more spiritual growth and wisdom. So perhaps suffering and pain are a path to God. And where does God dwell? In the body.

So mindfulness, to me, is only a third of the equation. We are not dualistic mind/body beings. And when we ignore our bodies by  placing  them at the altar of our minds, we aren't doing ourselves any favors. It throws us off balance. Any practice that emphasizes mind over body, mind and body over soul, simply negates who we are, and misaligns us with our true nature. We are mind, body, and soul.
The body houses the soul..it is sacred; the mind, which struggles for control over body and soul, needs to be brought into balance. I suppose practices like Mindfulness Meditation and Cognitive Behavioral Therapy are a start...a beginners guide, if you will,
to having a relationship with the mind.

But, perhaps because I am a Yoga teacher, I will always refer back to yoga, which takes into account that we are indeed tertiary beings. Body,mind, and soul. Yoga, as defined in the Yoga Sutras, is defined as the "stilling of the fluctuations of the mind". When we quiet the mind, we can tune into the soft whispers of our body, speaking the language of our souls.