A war is starting, similar to WW2. I am called in to service in Norway, but just to work on design and overseeing production of bikes. I am also called in by Russia/Soviet Union to fight nazi Germans in several successive locations. I have a Russian passport since I am married to a Russian. Since I am in Norway, I can get out of it by not going to Russia or any communist country. I have CFS so I know I wouldn’t be able to be a soldier anyway, but I can do the bike service. It’s very clear that this is all happening within and as the divine. It’s the divine exploring itself in all of these ways.
In the dream I am me as I am now and also somehow at the beginning of a war similar to WW2. I have two passports and chose between two ways to get engaged. One is violent, destructive, and impossible for me because of my health. The other is simple, local, constructive, and something I can do. Throughout the dream, it’s clear that this is all the divine exploring itself in these ways.
That choice, which seems very obvious, may be the essence of the dream. Choose something that simple, sustainable, local, somewhat creative, not too demanding or ambitious, and something I can do within my health limitations.
Note: In the dream, Norway was not occupied by anyone. Also, I am not married to a Russian in waking life!
Update: It’s now a few days later and I have found the metaphor from this dream very helpful for me. In daily life, I find I often have this choice. Go to war in Russia or work in a local bike-shop. The second choice is much more enjoyable.
I saw a post in a CFS/ME group on Facebook asking if others experience the world or themselves as dreamlike. A large number of commenters said they do. Some attributed it to trauma, although I suspect something more is going on here. I have long suspected a connection because of my own experience.
Background
First, some background.
Derealization refers to an experience of the world as unreal or dreamlike. Depersonalization refers to an experience of oneself, this human self, as unreal and dreamlike. These two are often seen as trauma-related, as ways the system deals with otherwise overwhelming trauma.
Brain fog, typical of CFS, is usually described as a set of cognitive dysfunctions that involve executive cognitive functions (memory, processing, etc.) and is often characterized by a direct experience of wooliness or fogginess.
The diagnostic criteria for CFS/ME do not include derealization and depersonalization and they are not included among the typical symptoms.
My story (part one): CFS and the experience of the world as dreamlike
In my case, there seems to be an intriguing connection between CFS and an experience of the world as dreamlike.
On New Year’s Day when I was fifteen, I was standing outside of my parents’ house and it felt like a fog came in and the world became distant. The whole world, including this human self, seemed to be far away. It came with an experience of wooliness and fogginess. This was profoundly disturbing to me.
I later understood that this was how the CFS/ME started, a few months after I had mononucleosis. I don’t remember how soon the many other symptoms came (fatigue, other aspects of brain fog, PEM, and so on), but I assume it was the same day or within a few days.
I still experience the world and this human self as unreal and dreamlike, appearing within and as consciousness just like a dream. It’s stronger when I am in a CFS-crash and have PEM, and it’s also stronger when my general brain fog is stronger – sometimes because of brain-fog inducing food (sugar, wheat, dairy).
If my sense of the world as distant, unreal, and dreamlike was connected with trauma, I would expect it to get stronger during stress and when emotionally triggered. It does not. If anything, I tend to feel sharper and more present then. Instead, it closely follows my CFS symptoms in general. It gets stronger with PEM and when food worsens my brain fog. To me, that suggests it’s related to CFS and not trauma.
I am used to it by now, although when it’s strong, and I am with people, I sometimes become very conscious about it and it still feels slightly disturbing until I remind myself that it’s normal for me.
Possible connections
There are several possible connections between CFS/ME and a dreamlike experience of the world and/or themselves.
The simplest explanation is that it’s an aspect of brain fog. Of the many aspects and expressions of brain fog, an experience of the world/this human self as dreamlike may be one – at least for some or many with CFS.
Some suspect a connection between psychological trauma and CFS, at least in some cases. Trauma may make some of us more susceptible to later getting CFS/ME. That may be the case for me too. It’s not the full picture but it may be one vulnerability. (In many cases, a virus or bacteria may be the actual trigger, with the Epstein-Barr virus as a classic example.)
If so, the derealization/depersonalization associated with trauma may be the reason why many with CFS/ME experience just that.
Is it sometimes misattributed and misdiagnosed?
There is another interesting and important possibility here.
Derealization and depersonalization may, in some cases, be expressions of CFS-related brain fog, and misattributed and misdiagnosed as trauma symptoms.
Of course, some CFS patients will also have genuine trauma-related derealization/depersonalization. But I suspect there is occasional misdiagnosis, especially among doctors and psychiatrists who are not very familiar with CFS.
Why is it not identified or talked about?
If this is a relatively common symptom of CFS/ME, why is it not officially identified or talked about?
It may be because it’s typically associated with psychological trauma so doctors may not think of measuring it as a neurological or physiological symptom. If it comes up, they may interpret it as a trauma response unrelated to the CFS.
What can the unreal and dreamlike experience tell us about CFS?
If one expression of CFS-related brain fog is the experience of the world as distant, unreal, and dreamlike, then what does that tell us about CFS?
What mechanisms are behind it? Can identifying these help us understand and possibly treat CFS?
Existing research
We know that several conditions, unrelated to psychological trauma, can cause an experience of the world as distant, unreal, or dreamlike.
We also know that several studies have found dysregulation of a wide range of systems in CFS patients. These include sensory and perceptual disturbances, reduced blood flow to the brain, and balance and vestibular disturbances. (See below for more on this.) All of this can possibly be connected to an experience of a dreamlike world/self.
Future research
CFS/ME research has limited funding so I understand that this is not a priority, but these topics are interesting and possibly important, and I assume they will be addressed by future research.
Here are some questions:
How common is it for CFS/ME patients to experience the world as distant, dreamlike, or unreal?
For those who experience it, does it worsen with PEM? Does it worsen with stronger brain fog?
Is this definitely connected with psychological trauma? Or could it be an expression of CFS-related brain fog?
What are some of the biological changes connected with CFS-patients experience of the world as unreal and dreamlike? Can understanding these help us treat CFS?
If it is an expression of CFS-related brain fog, how often is it misattributed to and misdiagnosed as psychological trauma?
How can we best help CFS patients disturbed by this experience of the world as unreal and dreamlike?
My story (part two): The world as dreamlike and awakening
Here is the second part of my story, which I am adding here since it goes beyond the conventional.
There is an intriguing connection between experiencing the world as dreamlike and awakening.
Later, I saw the shift at age fifteen as a kind of absorption into the witness, or an identification as an abstract witness. “I” became a witness, and this witness witnessed all (other) content of experience and experienced it as far away. Identification went out of this human self and into this mental construct of a witness.
Almost exactly one year later, between Christmas and New Year when I was sixteen, there was a oneness shift. All without exception was revealed as God AKA the divine AKA consciousness. Or, in other words, my nature as consciousness recognized itself as all there is. There was a shift out of identification as a witness and into finding myself as Big Mind or consciousness.
I suspect the first shift, into the witness and the world as distant, set the stage for the second shift.
It may be that the Epstein-Barr infection set the stage for the CFS a few months later. The CFS came with a strong brain fog including the sense of the world and this human self as distant and far away. And that, in turn, set the stage for the oneness shift a year later. That’s not the whole story, obviously, but it may be part of it.
CFS & spirituality / awakening
It’s possible that more CFS/ME patients than average are into spirituality. There is no research on this, but it’s my impression and it seems others have that impression too.
A chronic disease like CFS/ME may bring people to spirituality, and the reverse may be the case as well. People with a personality leaning towards spirituality may be more susceptible to ME/CFS for whatever reason. (Just like the “good girl/boy” syndrome often described by people who work with CFS/ME patients.)
I also wonder something else. If people with CFS have an experience of the world and/or this human self as dreamlike, they are already more than half way to awakening. It just requires a slight shift in noticing for them to recognize their more fundamental nature, which is consciousness. It seems like a golden opportunity.
For a few decades now, I have explored living with a chronic illness and disability – Chronic Fatigue Syndrome (CFS/ME).
I imagine that some of what I have found helpful for me can be helpful to anyone, especially in our society and culture.
Self-worth. In our culture, we are trained to find our self-worth through achievements and activities. What if we are valuable as we are? What if we have inherent value, just like all life and all beings? What if we are OK and enough as we are?
Pacing. Life has seasons. What if we include those seasons through the day and over a series of days? What if activity is followed by rest? What if we schedule in rest? What if we find restful ways to do our activities?
Body comfortable. How is it to do what I am doing in a little more comfortable way? How is it to find a more restful, enjoyable, and nourishing way to do it?
Ask for help. In our culture, we are trained to be self-reliant and self-sufficient. How would it be to ask for help? What if it’s not a burden for the other? Maybe that person is happy to help, feel useful, and contribute to someone else’s life?
Find an authentic yes or no. When you say yes or no, is authentic? Are you fully on board with it? Is it something you need to say to yourself or the other first? What are you afraid may happen if you say an authentic yes or no? Is it likely to happen? Is it something you can live with?
Find a “yes” or “no” in your body. When deciding to do something or not, how would it be to do this: (a) Say “I can do it if I want, and I want to do it”. Notice how your body responds. Does it relax. Is there excitement? Does it come alive? If so, that may be a genuine yes. Does your body contract? Do you hold back your breath? That may be a no. Then, say to yourself: “I can do it if I want, and I don’t want to do it.” Notice your body’s response. Does it relax or come alive? Does it contract and hold back?
Find meaning. How is it to find meaning in your life as it is? Maybe in connecting with nature? In genuine connection with others?
Find joys in daily life. How is it to find joys in daily life? In what’s already here or what you can easily do? In watching the sun or rain out the window. In the song of a bird. A cup of tea. A delicious lunch. Music. A conversation. Sitting on the terrace.
Making friends with your body. How is it to make friends with your body? As it is? It’s here for you. Every second of every day it’s here for you. It’s doing its best to support your life.
Making friends with your life. How would it be to make friends with your life? As it is? How would it feel? What would change? What stands in the way? What beliefs and identities may stop you? How would it be if they were not there? If you saw through them and they didn’t have a hold on you?
Making friends with your experiences. How would it be to make friends with your experience as it is here and now? The discomfort? Contractions? Anxiety? Frustrations? What if your experience right now is OK? What if it was OK to make friends with it?
Thanking contractions. When I notice contractions in myself – scared parts of me – I thank them. They are here to protect me. They were formed as a way for my psyche to protect me, often early in life. They come from care for me, and love for me. Thank you for protecting me. Thank you for your love for me. Stay as long as you want.
The essence of wants. Take any wish, want, or need. What do you hope to get out of it? What do you hope to get out of that? Continue until you arrive at a simple essence. (This simple essence may turn out to be universal, innocent, and even beautiful.) Do this with many of your wishes, wants, or needs. Is the essence of what you wish for already here? How is it to notice? Also, how can you bring it into your life more? (Adyashanti.)
Needs may be wishes. Is what you think of as a need really a need? Isn’t it really more of a want or wish? If so, how is it to admit that to yourself? (Byron Katie.)
Change “have to” to “want to”. Notice when or if you say “I have to…” to yourself or someone else. How is it to change it to “I want to… because…”? Is that more honest and authentic? How does it feel? (Marshall Rosenberg, NVC.)
Refining goals. I had to let go of some goals and find new ones, more appropriate to my situation and circumstances. That can be painful, although also rewarding. The new goals can be as good as the previous ones, or even better. They can come from more authenticity.
Nourish nourishing relationships. I have let go of relationships that were not so nourishing, and instead nourished – and sought out – more genuinely nourishing relationships. Nourish the relationships that make you come alive.
Nourish nourishing activities. Find, engage in, and prioritize nourishing activities, the ones that make you come alive.
Find connections with the larger whole. We are already part of this living planet and this unfolding universe, although we also live in a culture with a separation worldview. How is it to explore and deepen into these connections with the larger whole? (Deep ecology, Practices to Reconnect, Universe Story, Epic of Evolution, lived cosmology, EcoSpirituality, etc.)
Question and see through the shoulds of our culture and civilization. We live in a culture that has a strong domination element, and that’s hard for all of us. What are these shoulds? Where do they come from? What do they do with us, as individuals and society? Who or what do they serve? What are some alternatives? How would it be to bring those into my life and live from them?
One way I see CFS/ME is as a correction to our mainstream culture with its emphasis on productivity and finding value and identity through work. In this culture, more is better. Work hard and play hard. There is a one-sidedness here, and the world of CFS/ME is a correction to this one-sidedness. It’s a way for life to balance it out. There are important lessons from the world of CFS/ME for the rest of society.
Writing this, I am also reminded of good enough. With my brain fog and fatigue, it’s difficult for me to take in information and also to write. I forget. I can’t find much flow. It’s difficult for me to read over to edit. And that’s OK. It’s good enough, at least for now and for this article and this purpose.
Sometimes people tell me how I can “think myself well” from the Chronic Fatigue Syndrome (CFS). They have read an article, heard a story, or found that mindset or lifestyle changes helped them with their fatigue.
It’s meant well, there is a grain of truth in it, and it’s often based on a misunderstanding.
CFS IS A SERIOUS CHRONIC ILLNESS
CFS is a debilitating chronic illness and disability, with strict diagnostic criteria.
Although the exact cause is not yet determined, researchers agree that it is a biological illness, with biological causes, likely biological solutions, and typically triggered by an infection. Most likely, it’s caused by the body’s reaction to the infection, which is why it’s often called a post-viral disease.
It’s diagnosed after a long and thorough process to eliminate other conditions, often involving several different medical specialists each with their own tests and examinations.
Research has shown biological abnormalities in patients with CFS. This includes dysfunction in energy production, immune regulation, and the autonomic system. It seems that most if not all systems are impacted. These findings support what patients have reported, and strongly suggest that CFS is a physiological illness.
The dysregulation impacts multiple systems of the body and mind, including temperature, digestion, heart rate, cognition, and emotions. The bodymind doesn’t seem to have the energy or capacity to regulate as it normally would.
One of the core criteria is Post-Exertion Malaise (PEM). Any activity, whether mental or physical, worsens the condition, often severely and sometimes permanently. Rest can eventually bring us out of a crash, but it does not restore as it does for people who do not have CFS.
It has a severe and debilitating impact on those living with it.
WHAT IT IS NOT
CFS is not burnout, stress, depression, general fatigue, or another condition that may have a superficial similarity to CFS.
It’s not just “being tired“.
It has a different cause, a different trajectory, different symptoms, and different treatment.
WHEN PEOPLE TELL ME TO “THINK MYSELF WELL”
How does it feel when someone tells me to think myself well?
As I mentioned, I understand that it’s meant well and appreciate it.
I also understand that they don’t understand the condition. They may see it as a kind of burnout or a similar condition, in which case a psychological approach is appropriate and can reverse the condition.
CFS is very different. Science and patient experience shows it’s a biological chronic illness.
All health has a psychological and social component, and that doesn’t mean I can think myself well from CFS. I tried that approach for decades. At the different CFS clinics and centers I have been to, I have not met a single expert who thinks so.
So how does it feel when people treat it as a psychological illness with a psychological solution? It depends. It’s usually a mix of appreciation for the intention, and feeling not seen or understood.
MY SITUATION
I got CFS when I was fifteen, likely in response to mononucleosis (Epstein-Barr virus) some weeks earlier. During my twenties and most of my thirties, I was better, and then had a severe relapse in my late thirties following weeks of severe pneumonia. (I lived in a house with black mold at the time, with experts in the US and Poland think may have contributed to triggering it again.)
I was diagnosed at the CFS-center at the Oslo university hospital, after a process that involved a range of specialists and tests and lasted several years. The process involved interviews, blood tests, MRI, EKG, psychological evaluations, and so on. Specialist CFS clinics in the US and Poland confirmed the diagnosis.
I have all the usual symptoms of CFS, including PEM, brain fog, and general dysregulation of many of the systems of my body and mind.
It feels like living permanently with a strong flu or other infection, minus some and with the addition of other symptoms. Imagine having a strong lasting flu and trying to function in daily life for years and decades, and you get a rough sense of how it is to live with CFS.
It has severely impacted all aspects of my life.
WHAT WORKS FOR ME
Since the beginning, I have engaged with innumerable approaches to get better. Some alternative (herbal medicine, acupuncture, bodywork, energy work, faith healing, prayer etc.). Some psychological (therapy, cognitive therapy, inquiry, visualizations, gratitude.) And some conventional (pacing, rest, medicines, diet, climate). I have taken all of these seriously, learned from the best in the field, and engaged wholeheartedly with these practices or treatments, often for months and years at a time.
What I have found works for me are relatively simple physical approaches: Pacing. Rest. Reducing stress. Herbal medicine. Climate. Diet. (Specifically, resting before/during/after any activity. Prioritizing, learning to say no and asking for help. Siberian ginseng. Sunny and dry climate. Eating whole foods low on the food chain and avoid or minimize dairy, wheat, sugar, and processed food.)
I also suspect that hyperthermia helped me. After a hyperthermia treatment in Poland some years ago, I did much better for a while. I hope to try that again.
A psychological approach has been immensely helpful for me in relating to my illness and my life. In spite of my best effort, it has not helped the illness itself. I have used cognitive psychology, gone to several therapists long term, delved deep into several forms of inquiry, used several forms of visualization and gratitude practices daily for months and years, and much more. I am trained and certified in many of these approaches, and have been a client in many more. When I explore these, I typically go into it wholeheartedly and daily or weekly (depending on whether I do it for myself, or as a client) for months and years, guided by experts in the field.
It has helped me immensely to accept that I have a chronic illness and a disability. It was a huge relief to finally admit it, after 35 years of living with CFS and being label-adverse. It has also been immensely helpful to say it to others, and for them to understand the seriousness of the condition. When I just called it CFS, people often dismissed my condition – sometimes leading to severe crashes and a permanent worsening of my condiiton. Now, when I call it a chronic illness and disability, others take it seriously. I am fully open to my situation changing and to find health, and for now it’s a relief to admit this.
This is not how I expected it to be. I started out assuming, as some still do, that I could shift it through visualizations, meditation, intention, prayer, inquiry, and so on. What I instead found is that what stabilizes and improves my health are simple physical changes.
MATCHING THE TREATMENT TO THE CAUSE
In general, the treatment for an illness needs to match the initial cause. Or it needs to match what causes it to stay. What causes it to stay may be different from the initial cause1.
If the illness is mainly psychological in nature – burnout, stress, depression – then the most appropriate treatment is psychological, supported by diet, exercise, and so on.
If the illness is mainly biological in nature – cancer, a broken bone, CFS – then the most appropriate treatment is physical in nature, supported by psychological approaches, social support, and so on.
WHY SOME CAN “THINK THEMSELVES WELL”
Why can some think themselves well? I am not sure.
In some or many cases, they may not actually have CFS. They may be self-diagnosed without understanding the strict criteria required for such a diagnosis, or they may have received a quick diagnosis by a non-expert doctor. What they have may be more akin to burnout, depression, or similar, in which case a psychological approach works. The treatment is aligned with the cause.
In some cases, people with CFS get better for whatever reason or for no apparent reason. I was much better in my twenties and early thirties.
Even among those with a genuine CFS condition, there is diversity. It may be part of the solution for some and not for others.
THE PSYCHOLOGICAL APPROACH HAS ITS PLACE
I don’t at all reject a psychological approach to CFS or health and illness in general.
It can obviously help us immensely in how we relate to our illness and our life.
It can help us feel and function better.
In some cases, it can even play a role in recovery. At the very least, it can support recovery, along with other approaches.
IMPORTANT TO UNDERSTAND
At the same time, it’s important to understand a few things before recommending a psychological approach to people with CFS and other chronic illnesses.
As it looks now, CFS is a severe biological illness. If you wouldn’t recommend it to someone with cancer or a broken leg, think twice before you recommend it to someone with genuine CFS.
If you recommend it, do it in the context of relating better to the illness and life.
And as usual, the advice is for you. Take your own advice. Don’t offer advice to someone who hasn’t asked for it.
WHY SOME RECOMMEND A PSYCHOLOGICAL APPROACH
Why do some recommend a psychological approach to CFS which, according to what we know about it, is a biological illness?
As mentioned earlier, they may mistake it for burnout or something similar with a psychological cause.
They may want to be helpful, because they care.
They may want to try to help, to feel better about themselves.
WHAT’S MORE HELPFUL
Whatever is behind it, the intention is good.
And another strategy may be more helpful. Often, it just involves being present, listening, learning about the condition, and being generally supportive and understanding.
In general, if someone doesn’t ask for advice, they may not need it. They may just need you to be there and be a good friend.
NOTES
In my case, it’s possible that the Epstein-Barr (EB) virus triggered the illness, followed by a low-grade EB infection damaging my kidneys and other organs and systems, and that damage continues even if the EB virus is gone. The illness and damage itself may be caused by an immune response to the virus. If the virus “hides” in the cells, the immune system may inadvertently damage healthy cells in an attempt to get at the virus. I don’t know if this is how it is, but it’s possible.
I have had Chronic Fatigue Syndrome (CFS) for a long time now, and I keep noticing how my energy levels impact everything.
WHEN MY SYSTEM IS IN PEM OR A CRASH
When my system is in Post-Exertion Malaise (PEM) or a crash…
I don’t have resources to deal with anything apart from full rest. My system is solely focused on absolute rest and there are no resources for anything else.
I don’t have the resources to think, talk, plan, or make decisions. If I have to talk or make decisions, it usually doesn’t go very well. I say things that don’t make sense. I make bad choices.
I don’t have the resources to regulate my relationship with my emotions and thoughts.
My mind tends to project the current state into the future. Somewhere, my mind imagines that it will always be like this and that – understandably – brings up survival fear. It helps to notice what’s happening, remember that everything changes, and switch off any conscious engagement with future-thinking and rest here and now.
in general, my system has trouble regulating just about anything – temperature (easily too hot or too cold), appetite (I either lose appetite or eat more than usual in an attempt to restore energy), eyesight (gets blurry), emotions, cognitive processes, and so on. There is a breakdown in its ability to regulate many processes, and especially the “luxury” ones like thinking.
It’s difficult to do anything apart from full rest, and it’s difficult to relate to my inner and outer life in any skillful way.
WHEN MY SYSTEM IS LESS DEPLETED
My system is never not depleted. It never functions well and never has a lot of energy. But it is sometimes more stable and less dramatically depleted, usually after days, weeks, and months of very intentional rest – which includes choosing away just about everything apart from the essentials of survival.
When my system is not dealing with PEM and is not in a crash, I have some resources to deal with my inner and outer life, in short segments at a time. I can make some decisions. I can process information in brief moments. I can talk for a little while.
In general, my system has more resources to regulate whatever needs to be regulated, including emotions and cognitive processes.
A FEW THINGS THAT HELP
There are some things that help my system stay stable and avoid PEM and crashes.
The most important is regulating my activity and pacing. I limit my activities. I ask for help. I usually do the few things I do in five minute sections, after a lot of intentional rest. (This includes simple things like watching a movie.) I rest before, during, and after any activity, and extra. I notice the signs of having done too much (a weird vibration in my system, headache, nausea, a desperation for rest) and intentionally rest.
I am very conscious about my food and water intake. I make sure to drink a lot of water. (Herbal teas mostly.) I eat low on the food chain. (Vegetables, fruit, quinoa etc.). I avoid foods my body is not happy with. (Processed and refined foods.) I eat to two thirds full. I eat mostly during a six-hour window during the day. I have simple snacks regularly. (Nuts, fruit, vegetables.)
I try to get good sleep. I go to bed early. I try to sleep in a quiet place. I use melatonin or CBD drops if needed.
I try to intentionally relate to what’s here. With kindness. Noticing and questioning stressful thoughts. Tonglen. Ho’oponopono. Notice my headlessness. Find myself as Big Mind/Heart. Be a good parent for myself.
I ask for Vortex Healing energization. This supports my system in recovering from PEM and crashes.
THE LESSONS HERE
What are the lessons here?
When we are healthy, it’s easy to overlook how much energy required for even daily and apparently simple tasks. We may not even notice it takes energy. It’s invisible to us.
We don’t notice how much energy it takes to sit upright, to walk to the bathroom, to take a shower, to make food, to have a simple conversation, to process even simple information, to watch a movie, and so on. We also may not notice how much energy is required to regulate our relationship with emotions and thoughts.
When our system is depleted, as it is with CFS – and even more so with PEM and in a crash – all of that becomes abundantly clear. Even the simplest task requires a good amount of energy. Even something as invisible as how we relate to emotions and thoughts takes more energy than most notice or imagine.
There is a lot happening in my life these days, including some situations where I feel squeezed, so I need to take extra care of my health. (I have CFS.)
That’s also why I am not writing here very often. I don’t have the clarity of mind or the energy. And even if I did, I would need (chose) to preserve my energy for other things.
Having lived with CFS for a while now (decades), I am somewhat familiar with how it impacts my cognitive functions, and how I am able to process information and communicate.
CONVERSATIONS
In daily life situations, and on a good day with a lot of previous rest, I can talk and seem relatively normal for a few minutes. That is, if the topics are simple and familiar to me, and if I don’t feel under pressure. After some minutes, even simple conversations become challenging.
If I don’t have a good day, or the conversation goes for more than a few minutes, the topics are more complex, and/or I feel under pressure, then verbal communication is much more challenging. I have trouble taking in and processing information, and it can be very difficult to formulate anything coherent.
I have trouble remembering, finding and stringing together words, and organizing information. (It’s also very difficult for me to make good decisions, even about simple things.)
READING
I can read if the text is short, simple, on a topic I already am familiar with, and I don’t need to process much. As a kid, I was a bookworm and read far beyond my age. In my mid-teens, I loved books on science, systems theories, quantum physics, history and methods of science, and so on. That’s also when I got into Jung, Taoism, art history, philosophy, and much more. After the CFS got much stronger, some years ago, I have been unable to read much. I can skim through the occasional simple news story. (Even that’s challenging and not something I do most days.) I am unable to process or take in longer or more complex texts.
WRITING
Writing is sometimes easier than talking. I can see what’s already on the page (or screen), which helps me remember the topic and what’s next, and I can take time and take breaks and get back to it. That helps me express something more clearly and coherently.
When I write here, I usually write on topics very familiar to me, that’s here in immediate noticing, I seek to use a simple language, and I often write in a flow. (I do something look over and edit parts of the text, although only small sections at a time with rest in between. Often, I forget essential things that I later remember and add in.)
That’s on good days. On a bad day, and when my brain fog is extra strong, as it currently is, writing becomes far more challenging. If I write, the style tends to become more telegraphic.
HOW OTHERS PERCEIVE IT
This is my side of the experience. It’s interesting to notice, or imagine, how others perceive it.
On a good day, and in brief conversations where I feel comfortable, I probably seem reasonably normal and possibly even intelligent. (Especially if the person didn’t know me when my health was better.)
On a bad day, I likely seem quite disabled (which I am). If someone only sees me on a bad day, they can be forgiven to think that my poor cognitive functioning – poor memory, poor ability to process information, poor ability to find and string together words, and so on – means I am a little, or a lot, retarded.
In reality, those are all distinct abilities. You can be highly intelligent (or not) and still have bad memory, or be unable to find words, or be unable to process information.
Also, my general condition fluctuates. It depends on the week, day, the time of day, the moment, and the situation. Sometimes, I can do more and function OK for a while, other times, not so much. It’s completely unpredictable.
STRATEGIES TO APPEAR NORMAL
Another side of this is the circumstances in which people see me.
If you see me, it’s likely on a good day and I have rested a lot in advance. If it’s not a good day, you won’t see me.
You likely see me for short periods of time. I make sure any social engagements are brief, unless on rare occasions when I know I can lie down somewhere in silence and rest.
You see the result of a range of strategies I use to appear more normal. I write down everything I need to remember, otherwise I’ll forget most of it. I set alarms for the same reason. I intentionally talk about simple topics. I allow others to talk while I listen to conserve energy. If there are three or more of us, I let the others talk. If there is a group, I tend to disconnect from following the content of the conversation as I get more tired. I have learned to take “hidden” or invisible breaks.
For these reasons, people may think I function better than I actually do. Very few people have seen me through the day, and on the worst days. (If they do, they are often shocked.)
THE MANY CHALLENGES OF LIVING WITH CFS
There are many challenges in living with CFS.
The immediate symptoms and impairments, on their own, make life very difficult to live. Life becomes very reduced. A lot falls away, including most dreams and plans. (In many cases, life becomes close to impossible without extensive support and help from others.)
There is no treatment or cure. There is some research, although not nearly enough considering the number of people worldwide living with this condition, so a treatment may come but it’s not on the horizon yet.
It’s a poorly understood and often misunderstood disease. People have misconceptions, unless they have taken time to learn about it.
An additional cruelty is that others easily get a wrong impression for a combination of reasons. It’s an “invisible” disability. They may not know much about it. With a lot of previous rest, we may be able to function reasonably normally for brief periods. (For me, usually 5-10 minutes). People don’t see us if we haven’t rested a lot and happen to have a good day. And we have learned strategies to appear more normal.
I have had CFS since my mid-teens (moderate, mild), it got better in my late teens, twenties, and thirties (mild to mild mild), and then got a lot worse in my late thirties following a long period with pneumonia (severe, moderate, mild in periods).
Some years ago, during the period with stronger CFS, I had severe sleep problems. It was as if my system was unable to feel sleepy. I was exhausted, but never sleepy.
These days, I notice a lot more sleepiness. I am often overtaken with sleepiness throughout the day, and sleep whenever I can.
A part of me is slightly frustrated with this. And yet, I also know that it’s a blessing. It is, in a sense, a big step forward. It’s a huge improvement to being utterly exhausted and unable to feel sleepy.
For the last few years, since the CFS retreat in Norway, I have also learned to stabilize better. I have been more able to avoid crashes, although they still happen occasionally.
What has helped? Pacing has been a huge part of it. I also seemed to benefit greatly from herbal medicine. (Siberian ginseng for deeper energy, echinacea for the immune system, ginger for the digestion.) Breema helped me greatly. Qigong helps me. And Vortex Healing has been a (literal) God-send for me. It helps me with “emergency” energization in daily life, and it has helped my system and organs start the recovery.
There is still much further to go. I am still often unable to do much apart from the minimum daily life activities. But my system is more stable, I have a way to energize my system (VH), and I am sleepy rather than just exhausted, and that’s a big improvement.
My system is often able to quickly go into deep sleep, which is part of that blessing.
Jeg er kroppen din, og jeg skriver til deg fordi jeg vil at du skal vite hvor mye jeg elsker deg. Helt siden du ble født, har jeg vært her for deg – pustet for deg, båret deg, beskyttet deg. Jeg har gitt deg sansene dine, slik at du kan oppleve verden i all dens skjønnhet. Jeg har latt deg kjenne vinden mot huden, solen som varmer ansiktet ditt, smaken av et godt måltid, lyden av A.s stemme, duften av jorden etter regn.
Jeg vet at det ikke alltid har vært lett. Jeg vet at du noen ganger føler deg sviktet av meg, at du savner energien og utholdenheten du en gang hadde. Jeg vet at du blir frustrert når jeg ikke kan følge med på alt det sinnet ditt drømmer om. Men jeg vil at du skal vite at jeg aldri har sluttet å gjøre mitt beste for deg. Jeg jobber utrettelig, hvert sekund, for å holde deg i live, for å gi deg så mye som mulig innenfor de rammene vi har.
Jeg bærer byrden av denne sykdommen sammen med deg. Jeg prøver å hele, å justere, å finne balanse, selv når det er vanskelig. Når du hviler, jobber jeg på min måte for å gi deg det du trenger. Når du går gjennom tunge dager, holder jeg hjertet ditt bankende, lungene dine pustende, blodet ditt sirkulerende. Jeg gjør alt jeg kan for deg, fordi vi er ett.
Jeg trenger ikke at du kjemper mot meg. Jeg trenger ikke at du blir sint på meg for at jeg er slik jeg er. Jeg trenger kjærlighet. Jeg trenger vennlighet. Jeg trenger at du ser meg, ikke som en fiende, men som en alliert som prøver, hver eneste dag, å være her for deg.
La oss gå sammen, hånd i hånd, i aksept og samarbeid. La oss finne måter å nære hverandre på, støtte hverandre, skape de beste mulige forholdene for oss begge. Jeg elsker deg, P., og jeg vil alltid være her.
Jeg har levd med ME/CFS i noen tiår nå, og har studert en biopsykososial tilnærming over flere år på universitet i USA. Jeg har også bodd det meste av voksenlivet i USA.
For meg virker det som enkelte i ME-miljøet i Norge har en feil forståelse av hva en biopsykososial tilnærming innebærer.
“Biopsyko(øko)sosial” betyr at alt henger sammen. Om vi har et brukket bein, tuberkulose, kreft, ME, angst, eller hva det måtte være, så er det viktig å se på biologi, psykologi, det sosiale, og også økologi. Alt henger sammen. Det kan være en hovedårsak ett sted, men for å forstå og å behandle noe på best mulig måte er det viktig å ta med alt og å se alt i sammenheng.
De fremste spesialister på ME internasjonalt tar denne mer holistiske tilnærmingen. For meg personlig har en biopsykososial tilnærming vært helt nødvendig og svært viktig for å få det bedre. Jeg jobber med det fysiske (qigong, urter, diett, TRE, osv.), mentale (kognitiv psykologi, terapi, drømmer, osv.), sosiale (dyrke nærende forbindelse), og det økologiske (såper uten parfyme, være i natur osv.).
Det ligger i navnet at en biopsykososial tilnærming tar med biologi i forståelsen av en sykdom. Når det gjelder ME er det helt klart en svært viktig del av bildet, og kanskje det viktigste. Det er mye forskning på den biologiske siden av ME, selv om det burde vært svært mye mer.
Siden vi ikke har en god forståelse av ME ennå, så vet vi ikke sikkert hva slags rolle og hvor stor rolle det biologiske spiller, og det er viktig å være ærlig på det også.
Det er også viktig å huske at årsak og behandling er to forskjellige ting. Selv om det viser seg at ME hos mange hovedsaklig har en biologisk årsak, så kan den mest effektive behandlingen gjerne være helhetlig. Med andre ord, en biopsykoøkososial tilnærming.
Når enkelte i ME-miljøet i Norge snakker om en “biopsykososial” tilnærming, så virker det som de egentlig mener en reduksjonistisk psykologisk tilnærming til ME, en tilnærming der en reduserer ME til det psykolgiske. Dette er det motsatte av en biopsyko(øko)sosial tilnærming som i sin natur, og sitt navn, er helhetlig, holistisk, og ser på sammenhenger og systemer.
Når enkelte i Norge gjør dette bruker de et stråmannsargument. De fremstiller en biopsykososial tilnærming som det motsatte av det det er, og det hjelper ingen.
Det får bare ME-miljøet i Norge til å virke dårlig informert.
Om en vil bli tatt alvorlig er det viktig å bruke riktig terminologi.
I have had Chronic Fatigue Syndrome (CFS) since my mid-teens, following mono (Epstein-Barr). I was much better for several years, and then it worsened dramatically after a long pneumonia in the mid to late 2000s.
Most likely, the Epstein-Barr virus was in my system for years. I would get better and then suddenly worse again, which may be because of the virus. Vortex Healing (VH) has effective ways to work with pathogens, and I received several sessions for the virus. For a while, the same pattern would unfold – where I got better and then suddenly worse – until the main teacher did something to prevent it from returning. Since then, which was maybe five years ago, my health has been much more stable.
It didn’t cure the fatigue or brain fog, but it did stabilize my system which is a blessing and possibly allows for gradual recovery. I have worked with several organs and systems with Vortex Healing, and it all seems to help although there has been no cure yet. My kidneys were especially impacted, and they are better now.
In daily life, channeling Compressed Chi seems to help me the most. I notice a big difference after just a few minutes. I have also worked a lot on the constitutional energy of different organs and systems, and the prenatal jing and kidney essence.
A couple of days ago, I asked the main teacher for suggestions on what to work on next. He said that, as he sees it, I don’t technically have CFS anymore since the virus is no longer in my system. (Although I have all the symptoms of it.) He also recommended working on the lungs since they have deep congestion which contributes to fatigue and brain fog.
It makes a lot of sense to me to work on my lungs, and I am surprised it hasn’t come up before. I guess other things needed more help back then. I channeled Aliveness & Harmonics for my lungs last night, while in bed, and I also optimized the energy channels for the lungs.
I was prepared for it to bring up unprocessed material, which I noticed in my system when I woke up this morning, although I feel I am never quite prepared for it. Since it’s old unprocessed material, and since it comes from my old wounds, it tends to be of a kind that catches me to some extent even if I am aware of what’s happening.
What came up was a dream and feelings and memories related to sadness, grief, longing, and hopelessness. About 10-15 years ago, primal survival fear and anxiety came up to be processed. Some years ago, it was anger. And now, it may be sadness.
My suspicion (and guidance?) is that my cells may not make full use of the oxygen in the blood, so I channeled to optimize the oxygen use of the cells and mitochondria yesterday as well. It ran strongly so I’ll keep exploring that too.
In a few weeks, I hope to take a VH class in London which involves rapid breathing. (Shakti breathing to bring up the energy.) This has been very difficult for me in the past, likely because of the condition of my lungs. I have also done breathwork in the past, which tends to bring up so much that I am out of commission for one or several weeks.
I still have some time, so maybe I can help my lungs improve and make the class experience easier as a bonus.
As a kid, I had low-grade asthma, especially in the winter, and my lungs have always felt a bit weak even if I was active and athletic early in life. I notice my breathing is a bit shallow and tight, and I used to sense a block in the diaphragm area which I think Tension & Trauma Release Exercises (TRE) and some years of Vortex Healing have helped dissolve.
In the early 2010s, I did a TRE session at home that moved strongly into my upper body. It led to nausea and vomiting for a few hours, and when I asked my TRE teacher, he said it’s not uncommon when the diaphragm releases old tension.
Otherwise, I have noticed that doing Breema – especially giving and receiving bodywork – frees up and helps my breathing.
This is all rambling and stream-of-consciousness but I’ll leave it as it is. I could have mentioned more of the many things I have tried for CFS that all help to some extent, but I wanted to focus on Vortex Healing here since that’s what’s up these days.
Someone posted this in a social media group for Chronic Fatigue Syndrome (CFS), and some responded saying their body has become their enemy and their prison.
I understand. It’s natural to see it that way, especially in our culture.
I see it and viscerally experience it differently.
COMPASSION AND GRATITUDE
I find a deep compassion for my body dealing with all that’s going on related to the CFS. It’s doing its best. It’s innocent and hard-working.
I have a deep gratitude for this body, for the same reason. It’s here. It’s doing its best. It’s supporting this life. It’s allowing me this life in the world.
I find that my body is my friend. It’s my best friend (one of many!). It’s here for me. It’s whole existence is devoted to me.
AM I IN THE BODY OR IS THE BODY IN ME?
I also find it useful to ask myself this question: Am I in the body, or is the body in me?
I find that I am space for this body and whatever it’s experiencing and the symptoms related to the CFS. It’s all happening within this awake space and as this awake space. (This awakeness is the ordinary awakeness I assume is here for all “conscious beings”, it’s nothing special.)
I also find that the symptoms, like everything else, are ephemeral. They come and go and are always new and fresh and different.
EXPLORING
How did I find this? Through many years of processing, inquiry, and explorations to find what’s genuinely true for me. I have identified and explored innumerable stressful thoughts about my body and its symptoms and found genuine and specific examples of how the reversals are as or more true. The Work of Byron Katie has been very helpful here, as has the Big Mind process, basic mediation, Headless experiments, sense field explorations (Kiloby Inquiries), and mainly curiosity and noticing.
I also know that many parts of me are not on board with this, and come up to be seen, felt, understood, included, loved, and so on. I also know that with different symptoms and in different circumstances, different things may come up in me.
There is always further to go, and there is always what I am invited to explore and notice here and now.
CULTURE AND BODY
These views always happen within a culture, and one way to understand cultures is to see where they fall on the partnership and domination spectrum.
In short, before the agricultural revolution around 10,000 years ago, we were all indigenous. We lived in cultures largely on the partnership side of the spectrum. We saw ourselves as nature, as part of the web of life, as the web of life giving us life, as ephemeral expressions of this web of life, of all life as sacred, and so on.
With the agricultural revolution, we had the opportunity to amass wealth and “own” land, animals, and even people. This had to be justified, and that’s where a stronger domination orientation came in. We see ourselves as separate from nature, we are superior to nature, nature is suspicious, we need to control in order to find safety, the mind comes from and lives inside of the body, the sacred is removed to a sky god and the afterlife, and so on.
If we have that worldview, it’s no surprise if we see the body as a burden, or even an enemy or prison, as soon as it’s not healthy. If it’s not doing what we think it should be doing, we try to control it and we find ways to struggle with it.
On the other hand, if we have more of a partnership orientation, it looks different.
With that worldview, it’s natural to see the body as doing its best. If it’s sick, it’s often because the larger systems – social and ecological – are sick, as they are today. We live in a culture of imagined alienation and separation and consequently lives that feel, to some extent, empty. We live in an ecosystem that’s severely impacted by and degraded because of this culture.
No wonder we get sick. Our individual illnesses are often a symptom of what’s happening in the larger social and ecological systems, and it’s ultimately a symptom of our domination culture.
If our body is not healthy, we look (among other things) at the larger systems for reasons and we seek solutions in partnership with the body. For instance, we may seek to support our body by changing our diet, reducing stress, moving to a better climate, and so on, along with whatever approaches make sense from mainstream medicine.
I find myself as clarity and fog, and it’s familiar by now after some decades of noticing both.
THE CLARITY
The clarity is here, always. It seems inherent in what I am. It’s the kind of clarity the sky has.
There is awakeness, which is a very ordinary awakeness that seems inherent in what I am. I assume it’s the same kind of awakeness inherent in what all “conscious beings” are. This awakeness has inherent clarity. It’s untainted by anything. This ordinary awakeness takes the form of the whole world as it appears to me, as the whole field of experience.
There is capacity here, capacity for the world as it appears to me. This capacity also has inherent clarity and is untainted by anything. This capacity takes the form of everything – awakeness, all content of experience.
BRAIN FOG
At the same time, there is brain fog. It initially came when I was fifteen, and when it came, it felt like a fog was descending. It has been better and worse, and got a lot worse when the CFS worsened some years ago. It got even worse with the Lyme disease and long-covid over the last few years.
I notice the brain fog in two ways.
In immediate noticing, it’s like a fog that’s everywhere, and also like cotton in and around my head.
When there is activity in the world, it’s easy to notice how the functioning is different because of the fog.
THE SAME
The clarity I fundamentally am takes the form of the brain fog and all its expressions, as it takes the form of all content of experience. The fog is made up of the clarity I am.
Awakeness takes the form of what a thought may call fog. Capacity takes the form of what appears as fog.
GOOD TO NOTICE
It’s interesting to notice, and it helps my human self when it’s noticed.
It means that the fog is not “other” or an enemy or even inherently a problem (other than in a limited and practical sense in some circumstances).
It helps my human self and psychology to find curiosity about it, make friends with it, and so on. (This doesn’t mean there isn’t also at times frustration, struggle, and so. That’s natural.)
SURPRISE
When this human self is resting or on his own, and is not taking in or trying to express anything, the noticing mostly and typically goes to the clarity. There is a clarity here, awake space, that takes the form of all these experiences – the sensation of the wind, the sound of the wind, the taste of hot cocoa where others see a head, the sharp sensation of the chili where others see a head, the sight of the garden, the smell of the land here. The awakeness I fundamentally am takes all of these forms, and always new forms.
When my human self interacts with others, or tries to write, there is often a surprise. He is not able to take in information very well. He may feel a bit disoriented. He is exhausted and drained. In the moment, there is some surprise because of the contrast with the clarity here, and at the same time, it’s familiar.
DIFFICULT TO PUT INTO WORDS
I am very aware that writing about it – how my nature takes the form of all content of experience – won’t resonate with readers who don’t notice this for themselves… yet. Although it’s not that difficult to notice with some structured guidance.
It’s not difficult to talk about because it’s something very special or mystical or anything else. It’s difficult to talk about because words only work when they point to something the recipient is already familiar with.
MORE ABOUT THE BRAIN FOG
How does the brain fog impact how this human self functions?
It makes it difficult to think, talk, or write clearly. It makes it difficult to take in, process, and remember information. I often forget words. I am unable to be as responsive and engaged in conversations as I otherwise would, especially after a few minutes.
If I am rested, I may be able to do much of this relatively normally for five or ten minutes, and then the exhaustion sets in and it all becomes more difficult.
I can read brief texts, but I am unable to read longer articles or books. I can listen to podcasts if it’s on an easy or familiar topic, I am relatively rested, and if it’s not for very long.
When I write here, I usually write what comes to me as it comes to me, based on what I am noticing here and now (when I write about my nature) or what I learned about many years ago (about society, history, domination & partnership cultures, permaculture, food forests, systems views, and so on).
Always, there is a combination of direct noticing and what’s in the mental field of memories, maps, and so on. There has to be for words to come out and make sense.
I am typically not able to do much editing or re-reading of what I write, and I am not able to take in much info to enhance or elaborate on whatever I am writing about. There are many interesting topics I don’t write about, or only write about superficially, since I don’t have capacity to write as I would like because of the brain fog.
After the chronic illness, he became philosophical.
Someone in my family mentioned this, referring to me.
It’s true and not so true in a few different ways.
INVITATION TO REFLECTION
It’s true in that I have reflected in order to find peace with my situation.
My trauma and chronic illness has invited me to take a second look – and third and fourth and fifth – at my life, life in general, and relationships. It has invited me to (aim to) leave no stone unturned.
What stressful thoughts do I, or parts of me, hold as true? What do I find when I examine each of these? How does it color my perception and life? What’s the validity in the reversals? What’s genuinely more true for me?
I am motivated to examine any thought I hold as true since I know, viscerally and from experience and noticing, that holding any thought as true is stressful, and what’s genuinely more true for me is peaceful.
In that sense, the illness has made me more philosophical.
Inquiry is a kind of philosophy that helps me recognize – viscerally – a thought as a question and that it doesn’t hold any final, full, or absolute truth.
COPING STRATEGIES
It’s also true in that ideas are sometimes involved in how I cope with my life and situation. I have used ideas to help me cope with both trauma and chronic illness.
These are more or less healthy, although the less healthy ones are healthy too, in the sense that they are the best I can do in the situation and better than some of the alternatives.
I write here. Somehow, that feels right and it’s comforting to me. It helps me process and digest things in my life and the world. It invites me to examine beliefs and find what’s more true for me. Sometimes, writing is an escape and distraction, although it often leads into a more direct noticing and befriending.
I notice that sorting things out in thought can feel comforting to me, although it’s a hollow comfort. Noticing that is a reminded to… Rest in the consciousness I am noticing itself. See how it is to befriend my experience as it is. And identify and explore stressful thoughts and identifications, often held by part of me.
EARLIER PASSION FOR EXPLORATION
I have always had a curiosity about the world, and my passion for exploration and discovery started early in childhood, years before the chronic illness. Even as a child, I loved nature, science, adventure, explorations, the Universe Story as presented by Carl Sagan, and so on.
My curiosity, and my philosophical leanings if you want to call it that, started long before the illness.
NOTICING BEFORE MENTAL REPRESENTATIONS
With what’s most important to me, noticing comes before it’s reflected in thoughts.
Much of what I write about – and just about all that’s about exploring my nature – is first direct noticing which is then interpreted by and reflected in stories.
The noticing came first chronologically (the oneness shift happened years before I found books or heard about it from others), and it also usually comes first when I try to express it in words.
OTHER COPING STRATEGIES
There are several coping strategies that are not primarily about ideas. For me, these are more as or important than the ones mentioned above, and they are more essential.
The main one is the consciousness I am noticing itself. This is the coping strategy my system seems to have used when I was fifteen and sixteen. To deal with teenage angst and trauma, it seems that it shifted the center of gravity into Big Mind. Into oneness, into the consciousness I am noticing itself as (it’s experience of) the whole world.
When I was fifteen, it shifted into experiencing the world – all content of experience – as very far away. There was a simple and apparent observer-observed split. One year later, there was a shift into oneness and all recognized as consciousness. I am consciousness forming itself into the experience of everything, the whole universe as it appears to me.
This has stayed with me, and it’s still a coping mechanism. It’s easier to have this as a context for the experiences that are here.
Another is to meet and befriend what’s here in experience.
Notice and feel the sensations.
Thank you for protecting me. Thank you for your love for me. You can stay as long as you want.
Explore what it needs. Love? Acceptance? Safety? Belonging and home? Give it that.
Notice it’s nature. Notice it’s consciousness. It’s the consciousness I am forming itself into it.
Rest with each of these.
ALL TOGETHER
It’s all true in its own way, and always a small part of the bigger picture.
It’s also part of an ongoing noticing and exploration.
We just had the Summer Olympics in Paris, which I saw a few parts of – mostly sports climbing and surfing.
I find myself fascinated by sports psychology even if I don’t have much interest in top-level sports. Why? I have an interest in psychology in general, so it’s natural for me to be interested in sports psychology too. There is also a more personal reason, which I sometimes joke about: I live with Chronic Fatigue Syndrome (CFS), so I have to live the life of a top athlete. I have to take care of myself and manage my health and energy as they do, and I am always looking for more pointers and insights.
Although how it looks in the world is very different, there are quite a few parallels between the life of an athlete and living with a disability like CFS.
Here are a few that come to mind, with some examples from my own life.
BODY
NUTRITION AND HYDRATION
We literally are what we eat so this is obviously important.
Food. I find I function much better if I eat fresh food low on the food chain (vegetables, fruits, some grains), and minimize certain foods (in my case, dairy, caffeine, sugar, refined foods, hyper-processed foods). If it’s local, organic, and in season, then even better.
Just enough. I eat until I am about70 percent full most of the time. If I eat more, I feel heavy and sluggish. I seem to naturally eat slowly, which helps me notice when I am full enough.
Feedback. I notice the effects of different foods on my body and mind and choose the ones that feel good. These days, this is quinoa, most vegetables (I avoid onions), olive oil, feta cheese (the one cheese that seems to work well for me), and some fruits. I don’t eat many grains right now, apart from some beans in a chili now and then.
Hydration. I also function much better if I drink plenty of water, especially during the first half of the day. I drink a variety of herbal infusions and sometimes chai (without caffeine), hot water with roasted Maya Nut flour, or water with lemon. I often start the day with a glass of water with hydration salts. I taper off the water intake during the late afternoon and evening so I won’t need to get up in the middle of the night. I usually drink room temperature or warm drinks since it feels more nourishing to me.
ENERGY MANAGEMENT
Good energy management is another essential.
Pacing. When I engage in activities, I rest before, during, after, and extra.
I plan out the week and how much rest I’ll need for the – usually very few – activities scheduled. I allow some room for unexpected activities as well.
In my case, I find it helpful to also literally move slowly. I use slow movements in daily life – when I walk, shower, brush my teeth, make food, eat, and so on. It feels nourishing and helps me avoid crashes.
I like to schedule in plenty of time so I don’t need to rush.
Recovery and restitution. I schedule in rest after an activity. Often, I’ll do something for a few minutes and then rest for a while, until I notice I can do a few more minutes of activity. For instance, I always rest between daily activities like showering, making food, and so on. If I leave the house, I usually need to rest for what remains of the day and maybe the next one or two days.
Performance priming. I plan ahead so I have enough energy for a scheduled event. For instance, I know I have a meeting later today, so I rested extra for the last two or three days, and I made sure to get extra sleep and rest last night. I am also avoiding physical activities this morning, apart from the essentials like eating and showering. I also pay extra attention to eating foods that work well for me.
Varied activities. I vary the activities I engage in. Mainly, I vary activities that require mental versus physical energy. Sometimes, I have more mental energy and can do more mental tasks. Other times, I have more physical energy and can do simple physical tasks. Or I may need to rest from both.
BODY-MIND
Body awareness. I pay attention to the signals from the body. In addition to feeling extra fatigued, it can also be signs like a sense of vibration in my body, headaches, nausea, and so on. I have learned to take these seriously and rest when I notice I need to. Similarly, after some good rest, I may notice my body wanting to get up to do something, and if I don’t see a good reason not to, I’ll do it.
Good habits and routines. Habits deepen grooves so it’s easier to fall into them again. Even small changes in daily habits have a big effect over time.
I typically go to bed early, drink water with hydration salts first thing in the morning, eat low on the food chain, and so on. This summer, I have also often done qigong in the mornings, ideally outside in the morning sun. There is also a lot of room for improvement. For instance, I would like to set aside time for daily meditation again, and also more often go to sleep without listening to a podcast or audiobook.
Quality of rest. I am aware of the quality of my rest. I rest best horizontally in a quiet and tempered space.
Mindful of what takes energy. Activities that many consider restful actually require energy. For instance, watching a movie or listening to audio takes energy. If I want to semi-rest while watching or listening to something, it’s better if it doesn’t require a lot of cognitive or emotional processing. If I watch or listen to something that requires more processing, I do it when I have more energy and often only for five or ten minutes at a time.
MIND
Meditation. Different forms of meditation have been an important part of my life, now and in the past.
I used to do regular practice to train more stable attention, which helps in all areas of life, including in noticing and not so easily getting caught up in stressful thoughts.
I also notice my nature throughout the day. In one sense, I am this human self in the world. In a more fundamental sense, I am what this human self – and the wider world and anything within the content of experience – happens within and as. This gives a sense of coming home, and it helps this human self relate to it all with a bit more psychological distance and perspective. This noticing goes into the foreground or background at different times depending on where the attention is.
Mindful movement. Many athletes include mindful movement in their program. It helps them connect with their body and mind differently. I find mindful movement nourishing and transformative. For instance, qigong means to transform energy, and that’s how it feels. I may feel out of it in different ways – discomfort, sense of stagnation in my system, anxiety – and when I do qigong, I feel better, sometimes much better. It sets my system on a different course.
If I notice a tendency to rush in daily life, I take it as a cue to slow down. Rushing is uncomfortable and most of the time unnecessary. In my case, it can also lead to post-exertion malaise (PEM).
Resilience and coping strategies. How do we deal with challenges and setbacks? This involves perspectives, self-talk, and more.
If I find myself in a CFS crash, I know it’s easy to engage in fearful thoughts so I intentionally let them be and focus on something else. If I don’t feel very good one day, I remind myself that this is common and it changes, it’s a dip and rest helps. I give myself permission to not do anything useful that day apart from resting, which is the main priority anyway. It’s the most useful thing I can do.
If I notice fearful thoughts about the future, I remind myself that these are scary imaginations. They are not reality. I remind myself of what I have in my life – food, shelter, family, friends, and so on. I also look at the worst realistic scenarios, and it seems they are OK and I can find some peace with them.
If I am especially fatigued and brain foggy, I find it’s better to wait if I have decisions to make or need to do a task. When I feel a little better, I can do it more easily, faster, and better.
When I rest, I am doing my job. My job is to rest and give my body a chance to recover and build up some energy.
It’s also helpful to be aware of perfectionism. I don’t need to do any of this perfectly, all the time, or in all situations. It’s what I generally do that counts, that’s what has an impact over time. Also, small changes over time add up.
Finding my value. In our culture, we learn to tie our self-worth to our activities and identities in the world. That’s a problem whether you are an athlete or have a chronic illness, so it’s important to investigate this and find some clarity around it.
One side of this is that we all are far more than our activities, identities, and physical health. It’s one small part of the immeasurable richness of who and what we are.
There is also something more essential here. Can I find my value independent of my activities and identities? Do I have value just by being – just like a baby, or a cat, or a tree? Or maybe even existence itself? Is that my more real and fundamental value?
Clarifying priorities. I find it helps me to clarify my priorities. What’s most important to me in my life? If I am ninety-six and look back at my life, what would I have liked more of in my life? What’s less important?
If I know I will die tomorrow or in a year, how would I want to live my life today?
I also sometimes explore the more essential motivations I have. I notice I want something, and ask myself: what do I hope to get out of it? I keep repeating that question until I arrive at something simple and essential, which is also often universal. This also helps me see that there are usually many possible strategies to find that essence. (For instance, one need is to feel accepted and loved. I tried to find it through activities and identities, and I can now find it in a more essential way.)
Gratitude. This and the next one may not be common for athletes, but I find it helpful. I remind myself of all the things in my life it’s easy to find gratitude for – sun, wind, food, a cat sleeping next to me, friends, family, a roof over my head, and so on. We cannot take any of this for granted, and, amazingly, it’s here now.
I also explore the genuine gifts in what my personality doesn’t immediately like. My personality doesn’t like this chronic illness, and I can also find genuine gifts in it. It has helped me learn to rest. It has helped me find my value more independent of my activities and identities in the world. It has helped me identify, examine, and find more clarity around stressful thoughts. It has helped me be more aware of what’s important to me. It’s a relatively good container for self-exploration and exploration of life.
In periods, I explore the gifts in what my personality doesn’t like in a more structured way. For a set number of days, I engage in a regular all-inclusive gratitude practice with someone else. This helps open my mind to find the genuine value even in that which my personality may not immediately like.
Heart-centered practices. These help me find more peace with myself and the world. I especially like tonglen and ho’oponopno.
Goal setting. I sometimes set goals that seem helpful and feel deeply right. For instance, my goal for this spring and summer was to do qigong most mornings, with the help of a weekly course and the support from that community. This spring, my goal was to eat less sugar and I rarely eat sugar these days. I feel much better when I avoid it.
Reducing stress. I can reduce stress in several ways – by eating well, getting enough rest and sleep, asking for help, saying an honest no, nurturing nourishing relationships, being in nature, and so on. I can also reduce stress through the other points in this list, including examining stressful thoughts, grounded and kind self-talk, gratitude, heart-centered practices, and so on.
SOCIAL
Support system. It’s important to nourish a good support system, as much as we are able. Having friends and family that understand, and healthcare professionals who are knowledgeable about CFS, helps us in innumerable ways. They can offer emotional, practical, and informational support.
Communication of needs. I have had to learn to ask for help and see the gifts in it. I am also learning to say an honest yes and no, and that an honest “no” is a yes to myself. It’s also important to educate those around us about the characteristics of our illness. Fortunately, there are some good resources out there.
Guidance. I have found guidance from skilled coaches and professionals very helpful. Some have been in the field of functional medicine, others were in the mainstream medical profession although they specialized in CFS.
Peer support. When I went to the CFS retreat in Norway some years ago, one of the things that really helped me was being around people who understood how it is to live with CFS – from their own experience or through their professional practice. It made me feel seen and more normal, and I also got to see that certain symptoms I had thought had to do with me are common symptoms of CFS.
ECOLOGY / ENVIRONMENT MANAGEMENT
Supportive environment. It’s important to find a physical environment that’s conducive to what we wish to achieve. For me, what I want to achieve is rest and recovery, and that means a physically comfortable environment, quiet, and with some nature around.
A part of this is to reduce stressors – like extreme temperatures, noise, and so on.
Clean air/water/food. Again, we are what we eat so it’s important to eat clean food (organic), drink clean water, and breathe clean air.
Nourished by nature. We are nature, and we evolved in natural and rich ecosystems. It’s what feels right and enlivening to us at a primal level. I feel nourished by nature and seek out nature in daily life, whether it’s just noticing the wind, sun, rain, and so on, or it’s going out into a more natural environment.
NOTES
This is one of the topics that could easily be a book or a dissertation, and there are likely some out there already. I have just touched on a few examples here.
I notice the mind part of this is by far the longest, followed by the body. All four areas are equally important, although I do tend to focus on the mind and body since that’s what I am drawn to, and my social life is very limited due to the CFS. (I am far more engaged socially when I have more energy.)
I wrote this on August 13, just after the Summer Olympics in Paris, but didn’t publish it. I just remembered this article so am publishing it now, even if it could be better organized, weighted, and thought through.
How does a lack of healthy boundaries affect physical health?
A friend asked this on social media a couple of days ago, and I responded with a few words about how my lack of boundaries towards my own perfectionism likely has played a role in my Chronic Fatigue Syndrome (CFS).
That’s just one facet so I want to explore it in a bit more detail.
GOOD GIRL / GOOD BOY
A frequent informal observation from people in the CFS world – including often those in the medical profession specializing in CFS – is that “good girls” and “good boys” get CFS.
It certainly fits me.
I suspect being a good girl/boy has several sides to it.
Perfectionism
I have not had good boundaries towards my own perfectionism. I have put far more into my activities and tasks than most others, and have felt it was very important to do so.
For instance, as a student in Salt Lake City, I studied 1.5 times full time (mostly at a graduate level) and got straight As (often A+), and combined it with full time Zen practice as a resident at the Zen center, a job, and hikes in nature with friends from the Zen center. In my studies at the university, I would spend hours at the library reading literature outside of the curriculum because I was so passionate about learning. I read whatever studies and writings I could find on intentional communities, systems views, plasticity, EPS research, health psychology, environmental psychology, and much more. I partly was able to do this since daily meditation reduces the need for sleep, and I typically meditated 6-8 hours daily and more during retreats.
Before that, in Norway, I studied and practiced art often to the early morning, combined with reading a huge amount (Jung, Taoism, Buddhism, Christian Mysticism, deep ecology, philosophy), working for money, and studying full time at the university (where I also got top grades and mostly read literature in the library outside of the curriculum – about existential psychology, humanistic psychology, and so on).
My experience was that I loved it and did it because I was so passionate about it, which is true. And there was also a high degree of perfectionism there along with avoiding the pain and trauma in my system.
Saying a dishonest “yes”
I have also had a pattern of saying a dishonest “yes”.
I abandoned myself in Salt Lake City when I said “yes” to leave everything I had there – the Zen center, friends, my own graduate studies, work, nature I loved and felt profondly at home in – so I could support my wife in going to another state to do her graduate studies. It was profoundly traumatic to me. For months, I woke up in panic each morning over having left what so profundly felt like the right life path for me. For a year, I was also not allowed to work (applied for residency), so I burnt through all my savings that year. I felt profoundly off track, and have not really felt that I have found myself back on track since.
After a while, the marriage itself felt like being off track. She didn’t want to end it, so I again said a dishonest “yes” and stayed in it for far too long. This too deepened the sense of being off track and created deep ongoing stress in me.
Lack of boundaries towards perfectionism and shoulds in me
By being a good boy, I have overridden my own guidance and needs. I have not have good boundaries towards my own perfectionism and shoulds in me adopted from family and culture. I have been aware of all of this as it happened, but I was unable to go against it.
STRESSORS
A combination of stressors seem to set the stage for CFS, perhaps mainly…
(a) Physical stressors like an infection, mold and more. In my case, I had an Epstein-Barr virus infection prior to getting CFS, and when it returned strongly in my mid-thirties, I had lived with a strong pnemonia for months that my doctor didn’t want to treat. (She called it “walking pnemonia” because I, by a miracle, had been able to drag myself to her office 2 minutes down the road.) At the first onset, I lived in a basement with mold, and when it returned years later, I lived in a house in Oregon with mold. I also had different kinds of food intolerances the whole time.
(b) Psychological stressors. By saying a dishonest “yes”, I created a huge amount of ongoing stress for myself, and it has lasted for many years. Perfectionism, social anxiety, and more has also created ongoing stress.
CFS INVITES ME TO FIND MORE CLARITY
CFS invites me to examine all of this and find clarity and better boundaries.
It may appear that the boundaries are towards others, although what I find is that they are really towards my own perfectionism and shoulds. They are towards painful unexamined stories that parts of me hold as true.
I also find that clarity gives boundaries. I don’t need to try to have good boundaries so much, they come when I have more clarity about the stories and see where they are coming form, the painful effects of living as if they are true, and what’s more true for me than those stories.
I have Chronic Fatigue Syndrome (CFS) and am often reminded of it as a correction to our collective orientation.
We with CFS express, often without intending it, what’s missing from the collective orientation in our culture and civilization. We are a reminder of what’s missing. We are an invitation for the rest to bring more of what we live into their own lives, as medicine for an imbalance in the culture.
What do I mean by that?
A CORRECTION TO A DOING-FOCUSED CIVILIZATION
The most obvious is that it’s a correction to the doer orientation in our culture. We are trained to find our value in our actions and what we do. The more productive we are, the better. What we produce tells us and others who we are. It’s telling that the first thing we may ask a stranger is: what do you do? meaning what work do you do? What do you produce? We ask this as if that’s going to tell us the most important thing about that person.
Those of us with CFS are invited to find our value independent of what we do or produce. Who am I without identities related to doing and producing? Who am I independent of what I produce? Where is my real value? When I find that, I also find the more fundamental value of others and all beings.
Can I find genuine peace with resting? With taking care of myself? With saying an honest “no”? Do I see that an honest “no” is a yes to myself?
Can I find the genuine blessing in all of this?
Whether we notice or not, all of this is a blessing to society as a whole. It’s a reminder that we all have adopted the production-oriented mindset of our civilization. It’s an example of a different way of being.
The examination is an example. The freedom of certain shoulds is an example. Finding value in ourselves and others independent of what we produce is an example. How people live it will vary greatly, of course. If we can, we will still do and produce but from a different place in us.
HEIGHTENED SENSITIVITY
Another side of this is heightened sensitivity to several products of our culture and civilization.
I am highly sensitive to noise, certain foods, chemicals, and more, as are most people with CFS. We pick up the effects of these things and are strongly impacted by it. Most people experience and live the same effects, but they may not notice since their system is more robust and has more energy to deal with it and regulate its way out of the most obvious effects.
Noise impacts all of us. It creates stress. It takes energy to process and deal with. Those of us with CFS pick this up and express and live it, as a reminder to the rest of us who may not notice it so clearly.
Many of the foods common today are harmful to our health. My system has a strong reaction to just about anything I cannot make in my own kitchen from ingredients that are simple, whole, and low on the food chain. It’s a reminder to us collectively. This food is not what our bodies are meant to digest, it causes problems, and simpler foods are more natural for us to eat.
We willingly surround ourselves with a large amount of industrial chemicals in perfume, cleaning supplies, clothes, and so on. The sensitivity of us with CFS is again a reminder that this is not what our bodies have evolved to deal with, and it can and will impact our health.
We are canaries in the coal mine. The way our systems react is an early warning to the rest of humanity.
SIMILAR TO DREAMS
This is similar to dreams.
We have a conscious orientation, conscious identities, and so on. And yet, far more is going on in us and a lot doesn’t fit our often one-sided conscious orientation and identifications. Any orientation and any identification leaves, by necessity, a lot out.
Many dreams remind us of what’s left out. They are invitations to become more familiar with these sides of us, notice how we are already living them, explore other ways of more consciously bringing them into life, and embrace them more in our conscious view of life and ourselves.
This dynamic also happens in the world.
A problematic child is often a symptom of an imbalance in the family. They remind the family of what’s not consciously included and embraced.
Many health problems are a symptom of an imbalance in our culture and civilization.
Many of our current ecological crises are the same, a symptom of an imbalance in our civilization.
We can see all of this as a problem to be ignored or fixed so it can go away, and we go about it without looking at the bigger picture. We treat the symptom, which often means the imbalance will create other and more severe symptoms.
We can also see it all as a symptom, find some curiosity about it, and see what we can change in ourselves and in our culture and civilization.
This requires some receptivity and willingness to change, and what we need to change is often something deeply ingrained.
Finding that willingness can take some time. It may be the last resort for us after everything else has failed.
ONGOING PROCESS
This doesn’t mean that there is something inherently wrong with having an imbalanced orientation. It’s inevitable that our orientation is one-sided and leaves something out.
This is more about the process. We can look for signs of what’s left out and consciously explore, embrace, and live it.
There will always be something left out to notice, explore, and embrace.
There is an infinite amount of things that we leave out in our conscious orientation, as individuals and collective, and that’s wonderful. That means it’s an ongoing process. The exploration will not end because we run out of things to notice, explore, and embrace.
When I studied psychology, I quickly got into the biopsychosocial approach since I loved more integral, systemic, and holistic approaches in general.
BIO-PSYCHO-ECO-SOCIAL APPROACH
Really, I got into what I called a BioPsychoEcoSocial approach since ecology is part of it too, maybe the most important part. (I wrote my undergraduate thesis on that.)
What does it mean? It just means that our health has all of these aspects: Our biology, our psychology, our society, and our ecosystems. It’s all part of what forms our health and influences our well-being.
It’s what we all already know, just formalized a bit.
UNDERSTANDING MY CFS
It’s the approach I use to understand my own health. I live with Chronic Fatigue Syndrome (CFS) and it’s helpful to understand it by looking at these four aspects.
Biology
They find biological changes in people with CFS, and it’s likely I have some or all of those too.
It may have genetic components. When I uploaded my genetic profile to a European database, it told me I had a genetic variation associated with CFS.
When I initially got CFS at age fifteen, it was a few months after mononucleosis (Epstein-Barr). That’s a quite common connection. It’s possible the EB virus stayed in my system, and my system’s reaction to it may have led to CFS.
I was much better in my twenties and most of my thirties. When the CFS returned, it was following weeks and months with pneumonia. (My doctor wouldn’t treat it, and I – for whatever reason – didn’t change doctors.) I also lived in a house in Oregon with some mold problems, and it was after a long and wet winter.
Psychology
Although nobody knows for certain, it seems likely that childhood trauma may play a role in CFS. It may be one of several stressors that sets the stage for CFS. I certainly have my share of that.
I also had a lot of stress and teenage angst when I initially got CFS at age fifteen.
When the CFS returned in my thirties, I had a lot of stress from feeling “trapped” in a life situation that didn’t feel right. (Of course, I trapped myself in it since I could make changes but didn’t until I eventually did.)
Ecology
What’s the ecology part of it?
There may be good evolutionary reasons for having genetic variations that (also) set the stage for CFS. These variations may have other advantages for individuals and humanity as a whole. For instance, according to the genetic database I uploaded my genetic info to, it has to do with sensitivity. It’s not good for everyone to be extra sensitive, but it’s good for humanity and society as a whole to have some individuals like that.
I suspect diet and environment play a significant role in the onset of CFS, and it certainly plays a role in managing it and possibly healing from it. A clean environment and a healthy diet set the stage for better health, and environmental toxins and eating food grown with chemicals in depleted soil sets the stage for less good health.
Also, at least my psychology is influenced by what I see happening with nature and what I know is happening around the world, and I assume it’s similar for most people. Grief and anxiety come up when I see the unraveling and destabilizing of our ecosystems, and that’s another aspect of the overall stress.
Social
The social aspect also plays a role in my CFS, in several ways.
It may have contributed to the onset. I didn’t feel safe and comfortable in my family growing up, due to the dynamics between my parents and their fear of what others may think of them. I also didn’t feel comfortable in my class in school since there was a good deal of hostility and bullying from a few people there, also directed at me.
All together
I suspect that CFS comes about from a combination of predispositions and stressors, from all four aspects mentioned above. Nobody knows for certain, but that’s how it looks for now.
Managing and finding healing from CFS also involves all four of these, and I have explored and worked on all four since my late teens.
NORWEGIAN WEIRDNESS
I am partly writing this because I was reminded of some weirdness in the Norwegian CFS community around this. Several people there seem to have a beef with the biopsychosocial approach to understanding CFS.
They seem to mistake it for a reductionistic psychological understanding of CFS, and of seeing it as mainly or only psychological in origin.
To me, those two approaches are at the opposite ends of the spectrum.
A biopsychosocial understanding takes a holistic and whole systems view of health and disease. We look at all the many different factors influencing it to get a better and fuller understanding of what may be going on.
A reductionistic approach, whether it’s psychological or biological or something else, reduces it all to one thing and overlooks the rest.
So if you refer to a reductionistic psychological understanding of CFS, call it that. Don’t call it biopsychosocial since that’s something very different.
This is one of the many things Chronic Fatigue Syndrome (CFS) has supported me in exploring more thoroughly. If I notice any impulse to speed up – in walking, cleaning myself in the shower, washing the dishes, or anything else – I take it as a reminder to slow down.
As this video suggests, it helps me regulate my system. Even more importantly for me, it helps me avoid CFS crashes. Doing things slowly is an important part of pacing myself.
It’s much more comfortable and feels nourishing and kind to my system.
Also, it’s revolutionary in our society where speed and activity are valued. It’s medicine for that particular imbalance in our society and when we find it in ourselves.
This is one of many reasons I generally avoid stimulants like caffeine or refined sugar. It encourages speeding up and tends to mask the body’s signals to slow down and rest.
Yesterday and today, my system has felt quite off and disorganized.
I suspect it’s a kind of CFS mini-crash. I don’t know exactly what it comes from, possibly from lifting a few heavy boxes yesterday, or doing some “healing from emptiness” for my system over the last two or three days.
It’s not just feeling unwell somewhere localized, it’s my whole world – the whole field – that feels out of balance. In addition, there is strong fatigue, headache, sometimes nausea, strong brain fog, and so on.
So why not explore it?
FOLLOWING IT
I follow the movement in what’s here, in where it’s inviting and guiding me. It goes down, down. I find myself as soil, as ground. I find myself settling as all that is here, without needing it to be different.
There is a deep relaxation here, in finding myself as it all and joining in with and as what allows it all. There is no effort to make it different. No image – of how the experience or this human self should be – to follow. I find myself like soil, what just is, allowing it all. It’s effortless, real, earthy.
CONSCIOUSNESS
Consciousness notices it all as itself.
The sensations, the discomfort, the tension, the contracted areas, the fingers, the screen, the sun, the wind, the sounds of traffic in the distance, a fly buzzing in the window, thoughts, any sense of a me or I, any sense of a center or periphery.
It’s all awake space taking these temporary forms.
It’s all sliding on the smooth surface of the awakeness that takes all these forms.
AWAKENESS IN THE FOGGINESS
I notice the brain fog – the sense of cotton in and around the head, the sense of lack of clarity, the sensations of the headache. It’s lack of clarity, lack of organization. It’s this clear awakeness taking these forms, here and now. It’s the clear awakeness that’s always here, taking these forms, getting to know itself as that too.
This awakeness seems inherent in consciousness. It’s not a special awakeness. It’s the awakeness that I assume is there in any consciousness – whether it operates through humans or any other kind of being. The only difference is that sometimes, it recognizes itself as taking the form of its whole world.
FLOATING ISLAND
All of this is a kind of floating island in space.
This world – this room, the outside, and this human self – happens within and as awakeness.
What I am is also space for all of it. It’s as if these phenomena are an island floating in space.
NOTICES THAT IT NOTICES
Awakeness takes the form of it all and notices it and notices that it notices.
LIVING ITS OWN LIFE
There is a noticing of it all living its own life – these fingers, these thoughts, the sound of the traffic, the sunshine outside, the shapes on the screen, this human self, decisions, movements.
It’s all happening on its own, it’s all living its own life.
EARLIER IN THE MORNING
There is a memory of earlier this morning when this human self was more beaten down by how he felt. He slept. There was no effort to notice any of these things. And that’s OK too. That’s what happens sometimes. Sleep was likely more important then.
Now, after extra sleep and some food, there is this noticing. Clear awakeness takes the form of noticing. It’s noticing itself taking the forms here, taking the form of these experiences, of what’s here in this world, in this field.
A QUIET JOY
There is also a noticing of a quiet joy in all of this, likely from all this noticing.
What I am notices itself as this whole field of experience, and there is a quiet joy in that noticing.
WORDS
These words are extra. They make it sound more than and different from how it is.
It’s far less effortful. Far less having to do with the mental field.
ORGANIZING THE WRITING
When I initially wrote this, the mental field didn’t have much energy so it came out more as a flow and with less organization. A couple of hours later, as I had more energy, I went back, created headlines, moved a couple of sections, and edited the words slightly for clarity.
I have lived with Chronic Fatigue Syndrome (CFS) for a few decades, so I thought I would share some of my experiences.
What has helped me the most?
I find it’s a combination of several things, mostly the basics along with one or two more specific ones.
PACING
I have learned to pace myself better. I rest before, during, and after any activity.
I typically split up activities into 5-10 minute sections, with rest in between.
I schedule rest days before and after any significant activity – going out for an errand, having a visitor, cleaning, and so on.
I schedule in extra rest since things may happen so I’ll need to spend more energy than planned.
This has helped me enormously and I am still learning about how to best pace myself. It has helped me avoid crashes and generally stabilize.
REST
When I rest, I aim for quality rest – a quiet room, dark, cool, and so on.
Any activity takes energy, including listening to something or watching a movie. I still watch videos or movies, but not if I need or want to rest more deeply.
DIET
I find that eating fresh and low on the food chain helps me a lot. Ideally, it’s local and organic as well.
I also minimize and avoid certain foods: Refined or super-processed foods are often not very nutritionally dense. Refined sugar causes my energy level to go up and down too much. Caffeine gives a kind of “false energy” that masks when my body needs rest. Dairy makes me feel bloated and sluggish.
When I eat like this, I find that my system is far better at handling the exceptions since I, on special occasions, will eat just about anything.
I aim for a good general diet, and it’s good to be flexible.
WATER
I drink a lot of water, mostly in the form of herbal and spice teas and water with lemon. I aim for clear to lightly colored urine.
My highest intake is in the morning and early afternoon, and then less in the late afternoon and evening. That helps me not need to get up in the middle of the night.
I find that this too helps me a lot.
CLIMATE
I find that I feel better and have more energy in dry and warm weather, with occasional rain.
If it’s too cold (less than 15 c) or too hot (25-30 c and above), it seems that my body needs to use a lot of energy to regulate, and it’s not very good at regulating in general.
I know this is individual. For instance, I have talked with people with CFS who do better in cold climates.
ASKING FOR HELP & SAYING “NO”
CFS has helped me be more authentic.
It has helped me be more transparent, ask for help, and say “no” when I need to.
Asking for help and saying “no” is easier the better those around me know and understand my condition. Sometimes, it helps to refer to an authority like doctors or organizations that provide thorough and accurate information about CFS.
REDUCE STRESS / CLARIFY
In general, it (obviously) helps to have a stable life situation, reduce stress, find meaning in life, clarify our priorities and what’s really important to us, and so on.
In general, find what’s nourishing for you, and nourish that. Notice what drains your energy, and minimize or eliminate that.
Some of the approaches that have helped me are heart-centered practices (Tonglen, Ho’oponopno, all-inclusive gratitude practice), inquiry (The Work of Byron Katie, Kiloby Inquiries, the Big Mind process, the headless experiments), neurogenic tremoring (Tension & Trauma Releasing Exercises / TRE), training a more stable attention, and basic meditation.
I have written about this in other articles so won’t go into it in detail here.
MINDFUL MOVEMENT & NATURE
I find that gentle mindful movement – in my case Breema, Qigong, and tai chi – helps me feel more whole and myself. I feel better and can relate to situations better.
It’s the same with being in nature. I feel more alive, more myself, and more connected with the rest of life.
FOLLOW MY INNER KNOWING
I have learned to follow my inner knowing and guidance more consistently, although there is still room for improvement!
I have lived with this body my whole life, and with CFS for a few decades. I can generally feel when I am about to do too much, when I need rest, and how complete that rest needs to be. I can also imagine into situations and get a sense of how my system is likely the respond, and make decisions accordingly.
HERBAL MEDICINE
I take Siberian Ginseng (eleuthero) and echinacea for energy and my immune system. These days, I also take Lion’s Mane for my memory (impacted by long-Covid). I buy the powder, fill my own (000) capsules using a capsule-filling tray, and take 3-4 of each daily.
At times, I also take cod liver oil and/or vitamin D capsules, vitamin B12 sublingual tablets, magnesium, and/or a few other things.
ENERGY WORK
About eight years ago, I discovered Vortex Healing which is a form of energy work that can be done in-person or at a distance. I was skeptical at first since many healing modalities seem too strong for my system, but was favorably surprised. I have taken the trainings (up to UAP so far).
What I benefit from the most these days is receiving energization sessions. I notice a clear difference before and after. They provide me with a very welcome boost.
VH also seems to help with detecting and removing sub-clinical infections, strengthening the system in general, and working through any emotional issues (identifications) impacting general health and the energy system.
It also helps if I crash. It seems that my system gets very disorganized when it crashes, and VH helps boost the energy and helps it get more organized again.
For me, it hasn’t been a magic bullet but it has helped me greatly. I also feel calmer knowing that a VH session can help stabilize and boost my system.
WORKS TOGETHER
I listed these from the most basic to the more specific, not by order of importance.
It’s not so easy for me to rank these, mainly because they all work together. They all contribute.
If I were to rank, I would do as I did here and put the basics first: pacing, rest, diet, climate, and relationships.
FIND WHAT WORKS FOR YOU
Some or all of this may be different for you. What’s important is to find what works for you.
Notice what you do, and notice the effects. Or explore it more systematically.
I have done a combination of both and there is still a lot for me to explore and discover.
A livestream about Chronic Fatigue Syndrome (CFS/ME) from the husband, friends, and doctors of Dianna Cowan (Physics Girl).
CFS is a seriously under-researched illness. Maybe because it’s difficult to know where to start. The majority of people with CFS are women. And the ones who get it are often so sick that they (we) don’t have the energy to become activists.
The recent pandemic, and the subsequent and predicted pandemic of people with long-Covid, will hopefully bring more attention to CFS and fuel more research.
What are the symptoms of CFS? Common symptoms include persistent and unexplained fatigue that doesn’t improve with rest, post-exertional malaise (PEM), heightened sensitivity to chemicals, light, and sounds, difficulties with memory and concentration, sleep disturbances, muscle and joint pain, headaches, sore throat or tender lymph nodes, dizziness, unrefreshing sleep, flu-like symptoms, digestive issues, heart palpitations, and swollen lymph nodes.
How does it feel to have CFS? For me, it feels like having severe influenza without a runny nose, coughing, and so on. The brain fog takes the form of a combination of a feeling of “cotton in the head” and reduced executive cognitive functions such as the ability to focus, take in information, remember, talk coherently, write longish texts, and so on. It’s very difficult to process information. If I want to watch a movie, it typically has to be easily digestible and in short portions. My sleep has been severely impacted in periods, although it’s better now after my condition became more stable. My system has trouble regulating itself, including heat and cold. I have digestion problems and need to avoid many different types of foods. I have chemical sensitivities. I have strong sound sensitivity and get exhausted in a noisy environment. It’s very difficult to impossible to schedule anything in advance since I don’t know how my condition will be on any one day or time of that day. (Although a lot of rest for several days, if not weeks, in advance, makes it more lightly I’ll be able to do a little.)
It has nothing to do with depression, although I have had sadness, grief, despair, and anger come up because of all the limitations of CFS. It can also be profoundly scary, especially in bad periods. For me, it brings up survival fear since I don’t know if I’ll be able to take care of myself or have someone take care of me.
It severely limits our life in the world and puts our life in a very different course from how our lives used to be and what we had planned. As I mentioned, grief and fear often come up in response to our new life situation.
Others often do not understand. Friends have taken it personally if I have to say “no” or cancel. I have had several experiences with people refusing to take it seriously (including professors and advisors at the university). My main doctor did not take it seriously for a long time, although that changed when he got a medical student in his office. As recently as last year, I went to a medical specialist in an unrelated field, and he literally rolled his eyes and scoffed when I told him I have CFS.
Living with CFS also makes it very clear that we live in a society designed by and for abled people. For instance, before the pandemic, I asked my doctor if we could do appointments over the net and it was immediately rejected. During the pandemic, when abled people were impacted, it was suddenly very easy to do appointments over the phone or the net. The same happened with the energy work classes I have been taking.
There is also the other side. The friends I have now understand and are supportive. My family now seems to understand. I have found doctors and others in the medical world who are knowledgeable, understanding, and supportive. I have had the opportunity to find my value independent of my activities in the world and what I produce. I have found more peace with what is, as it is, and even profound appreciation and gratitude for it. I have found a simpler and more natural way of exploring who and what I am, including meditation. I have found an even deeper appreciation for life and the simple pleasures and joy in life – including the sun, rain, a cup of tea, music, silence, and so on.
What causes CFS? Nobody knows for certain. It may be a combination of factors, or it could be just one simple one. In many cases, it seems to be triggered by a viral or bacterial infection, or other severe physical stress.
In my case, I suspect the CFS came about from a combination of a viral infection (Epstein-Barr) and possibly continued EB virus in my system, stress, mold, and perhaps genetics, although I don’t know for certain and I don’t know the mechanisms.
What helps? Since there is no medical solution, a holistic approach seems to be the best we can do. For me, what helps is a combination of… Reducing my schedule to a minimum. Quality rest – in silence and darkness and ideally in a cool room. Pacing – which includes resting before, during, and after any activity, and extra, and also schedule in rest days before and after any activity. Asking for help. Diet – which for me means eating fresh and whole foods low on the food chain as much as possible, and minimizing or avoiding dairy and refined and processed foods (especially sugars). Herbal medicine – Siberian ginseng, echinacea, etc. Ginger powder in hot water to help my digestion. Hot spices in food, like cayenne. A warm and sunny climate is best for me. Nature and being in nature. Mindful movements – for me, Breema, tai chi, and qigong seem to help the best. Simple pointers to help me notice and rest in and as my nature. Inquiry to examine stressful beliefs and find what’s more true for me. Energization through energy work, which in my case is Vortex Healing.
Will there eventually be a medical solution? Maybe, if we put money and time into research.
NOTE: If you recently got diagnosed with CFS/ME, or suspect you have it, it’s very important to REST and avoid over-exertion. Take it very easy and get to know how your body functions with CFS/ME, which is very different from what you are used to. Rest and slow down more than you think you need. It’s common to try to do too much, crash, and get worse, and that may happen repeatedly until you are bedbound most or the whole time.
This perfectly captures how it feels to live with Chronic Fatigue Syndrome (CFS).
I may look fine or OK to others. I am often able to mobilize for short periods and appear relatively normal. And my experience of myself is very different.
HOW IS IT TO LIVE WITH CFS?
How does it feel? It’s almost impossible to describe, but here are some attempts:
It feels like having severe influenza minus the congestion and fever. It’s equally difficult to think and get up from bed and do things.
I have strong brain fog: It feels like cotton in and around my head. It’s difficult to remember things. It’s difficult to make good decisions. (Sometimes, it’s difficult to make even the simplest decisions.) It’s difficult to take in information. It’s difficult to stay focused for more than five or ten minutes. (I typically have to watch movies in short segments over several days.) It’s difficult to string together words. (which is why these writings are short, choppy, and feel like a list of points.) It’s often difficult to find words. In bad periods, it’s difficult to relate to life and what comes up in the way I do when I have more energy. In short, the executive functions are impaired and it gets worse the worse the CFS is.
I get worse after just about any activity, and sometimes a lot worse. Any type of “explosive” activity (walking fast, heavy lifting, etc.) is just about impossible since it causes a severe crash. And any type of activity at all worsens the symptoms and requires a period of recovery. Simple and essential daily life activities are often all I can do. And, in periods, even that’s very difficult.
I have to schedule extra rest before, during, and after any planned activity. If I am meeting someone, or if I have an appointment of any type, I typically have to rest for days before and after. I have learned to do things slowly.
It takes a long time to recover from infections and other illnesses.
In short, my system lacks resources. It lacks the resources to do things. To have conversations. To take in information. To process. To think. To consciously and intentionally relate to life and what’s coming up in me. To recover after other illnesses. And so on.
At an energetic level, I and others have found a pattern: My system seems very disorganized when I have a crash. That’s perhaps not surprising. It takes energy to keep a mind-body system organized. When it’s energized (using Vortex Healing), my system again becomes more organized.
SOCIAL, MEDICAL & POLITICAL ASPECTS
This is challenging enough in itself. On top of this are the social, medical, and political aspects.
Most people don’t understand it very well and may assume it’s just mild tiredness. They typically see me when I am able to mobilize for a few hours, or in the better periods, and they don’t see what’s happening the rest of the time. Some get upset that I have to cancel appointments, and don’t realize how much effort I put into trying to make it happen. Or they think that my long periods of not staying in touch mean I don’t value the connection.
CFS is a kind of “pariah” illness. It’s poorly understood. There isn’t much research. Politicians and policymakers don’t take it very seriously. Many doctors don’t know much about it. There is no mainstream medical treatment. (In Norway, the largest newspaper – Dagbladet – seems to have a campaign to show that CFS is just a matter of “pulling yourself together”.)
This will very likely change. I am sure they will understand the mechanisms better. (The trigger seems to often be a combination of physical and/or psychological stress, often involving a viral infection.) They may even find an effective treatment or cure. If or when that happens, CFS will be included among the acknowledged and understood diseases. (There will still be diseases in the pariah category going through a similar process.)
HOW I HAVE EXPLORED IT
I have lived with this since my teens, and I have tried a wide range of approaches.
I have found a diet that works for me. (Eating low on the food chain. Reduce or avoid sugar, wheat, and dairy. Drink lots of water / herbal teas. Have bone broth daily. And so on.)
I have found that sun and moderate to warm climate work well for me. (Cold weather impacts my system strongly, as does very hot weather. Both place an extra demand on the very limited resources of my system.)
I have learned to rest before, during, and after activities. I have learned to portion out tasks over time and move slowly.
I have used a wide range of herbal medicines. For instance, a combination of Siberian ginseng (eleuthero) and echinacea seems to work well. (I fill my own capsules and have around five large ones daily. Siberian ginseng gives energy and echinacea helps my immune system. I have used this for long periods, and am now taking a break.)
I discovered that hyperthermia treatment seemed to help me greatly for several months. (I would like to try it again but it’s expensive and I need to travel quite a distance for it.)
I have tried a wide range of alternative treatments. What seems to work the best is Five Element Acupuncture. (Helps for a day or a few days.) Breema. (Gives an amazing sense of health and wholeness beyond the struggles of this human self). And Vortex Healing. (Energization and removing pathogens.)
And I have also found different forms of inquiry to be very helpful. (The Work of Byron Katie, Kiloby inquiry, Headless experiments, Big Mind process, and so on.)
UPSIDES
There are also upsides. It has been an invitation for exploration and transformation. It’s an invitation to find my value independent of my resume or activities in the world. To be more authentic and transparent. To find value in rest. To find the gift in asking for and receiving help. And so on.
In many ways, CFS is an invitation to examine and see through many of the assumptions in our society and find what’s more true for us.
It can bring a correction to some of the lopsidedness of our current civilization. (Including valuing people according to their resume or activities, valuing doing over resting, and so on.)
How will future generations look at Chronic Fatigue Syndrome (CFS/ME)?
Of course, nobody knows. But it’s possible to make some educated guesses.
CFS IN HISTORY
It’s not much of a stretch to assume that CFS will go down in history as yet another illness that the medical profession – and society as a whole – didn’t take seriously enough.
Anyone with a more direct connection with CFS knows it’s a serious, debilitating, and very real illness, and one that often comes after a viral infection.
WHY IS IT NOT TAKEN MORE SERIOUSLY?
So why has the medical profession not taken it more seriously? Why doesn’t society take it more seriously?
There are several likely answers:
It impacts more women than men, and “women’s diseases” have traditionally not been taken as seriously as the diseases that impact men.
We don’t have an easy method for detecting CFS. It’s an exclusion diagnosis. We need to exclude a lot of other diseases it could be and are then left with CFS.
We don’t have a clear understanding of the mechanisms behind it. It’s easy for some doctors to assume it’s psychological. Or it’s something they don’t want to deal with because it’s difficult to diagnose and they can’t do much about it.
It may not be so attractive to most researchers. They may not know where to start. And even if they did find some answers, there hasn’t been much money in it. (That may change now that so many have some form of long covid.)
Those with CFS are typically in no position to speak up in a strong or well-organized way. We don’t have the energy or resources.
CFS AND COVID
We knew that the covid-pandemic likely would lead to a lot more people with CFS, and that has turned out to be the case. The media is giving it more attention. And I assume there is more research now than before the pandemic, although the research is likely focused specifically on long-covid.
Long-covid is a post-viral syndrome and a form of CFS. It can take different forms, as can CFS in general. It often comes with fatigue, post-exertion malaise (PEM), and brain fog, as does CFS in general. And it does sometimes have characteristics more unique to covid, like lung damage. (In my experience, it impacted my memory and gave me Teflon brain, which CFS from the EB virus didn’t do in the same way.)
MECHANISMS
What is the mechanism behind CFS?
Nobody really knows. We may find one clear mechanism, and even then, I assume we’ll find a lot of factors that play a role. (In my case, I assume the trigger may have been a combination of genetics, stress, mold, and the Epstein-Barr virus. The second time I got strong CFS, it was following pneumonia.)
SOLUTIONS
What will the solution be?
I have no idea. We may eventually find a medical treatment that works wonders. In the meantime, the best approach seems to be a combination of nutrition, herbs, rest, and cognitive and behavioral strategies to deal with the condition in the best way possible.
There are several connections between Chronic Fatigue Syndrome (CFS) and the current Covid 19 pandemic, and I have written about it in previous posts. Here is a brief summary.
Long covid was predicted and predictable
CFS is also called a post-viral syndrome since it often follows a viral infection.
Those of us familiar with post-viral syndromes and CFS predicted that we would see many post-viral syndrome cases following the covid 19 infections.
There would be a pandemic within the pandemic. First, those who got acute covid 19 infections. And then, those with the post-viral syndrome and CFS following these infections.
I wrote about this a year ago, at the very beginning of the global pandemic.
Research into CFS & post-viral syndromes
The slight silver lining in this situation is that long-covid may lead to the medical field and governments taking post-viral syndromes and CFS, in general, more seriously. We may see the beginnings of this.
The main symptoms of long covid and CFS are the same: fatigue, PEM, and brain fog. Although there may also be some unique symptoms of long covid, including visible damage to the lungs and other organs.
A missed opportunity
The medical world has largely ignored CFS. It’s often not been taken seriously as a biological disease, and there has been minimal research into it.
That’s doubly unfortunate.
It’s unfortunate for those of us who have CFS and know it’s a real and serious disease.
And they missed a golden opportunity to be prepared for long covid.
We knew a pandemic would come and that we were on schedule for a new one.
And we knew that viral infections lead to a significant number of post-viral syndromes.
So why didn’t they take the opportunity to prepare by learning about CFS and possible causes and cures? Why didn’t they take the opportunity to nip the predictable current upsurge in post-viral cases in the bud?
In the coming decades, ignoring CFS will go down in medical history as an injustice to those with CFS. And also a missed golden opportunity to learn more about CFS before the predictable pandemic upsurge in people with post-viral syndromes AKA long covid.
This pandemic may be a triple pandemic. The first is the viral and medical pandemic. The second is the social cost. And the third is the large numbers of those with long covid.
If researchers and governments had the foresight, they could have prevented the third. Now, they are instead playing catch-up.
The fight/flight/freeze response seems connected with Chronic Fatigue Syndrome (CFS). It may be chronically activated and connected with many of the typical symptoms of CFS.
Although this is well-known in the CFS world, we don’t many specifics or the why or how or what to do about it.
When the flight/fight/freeze (FFF) response is activated…..
The eyes dilate. Light sensitivity is typical for CFS.
The heart works harder. Faster, stronger, and sometimes irregular heartbeat is relatively common for CFS.
Digestion is inhibited. Many with CFS have digestive problems.
Sexual function is reduced. Again, common in CFS.
There is heightened sensitivity to any stimuli. Hypersensitivity to sound, movement (around us), and chemicals is typical for CFS.
Higher cognitive functions are reduced. The body’s resources are used for more immediate concerns. Reduced higher cognitive function (executive functions) is a core symptom of CFS.
Sleep has low priority and the FFF response counteracts sleep. Sleep problems of all sorts are common with CFS. (Difficulty falling asleep, staying asleep, and don’t feel refreshed after sleep.)
Sweat secretion is activated. Increased sweating and cold sweat is common with CFS. As is temperature dysregulation.
There is less blood to the skin and kidneys. People with CFS often have white spots in the hands and fingers. I wonder if that’s connected to reduced blood flow? (Also, in Vortex Healing, weak and infected kidneys is one of the first things they work on.)
And finally, if the FFF response is chronically activated, you’d expect to see fatigue. And that’s another core symptom of CFS.
More in general, while the flight and fight response seems chronically active and may account for many of the symptoms, the condition also looks a lot like freeze (need for rest, isolation, etc.).
How can we make use of knowing about the FFF / CFS connection?
For me, it helps me feel less weird. I see that many of my symptoms make sense in the light of a chronically activated FFF response.
And anything that reduces the FFF response is helpful, like mindfulness, gentle yoga, and (skilled, gradual) work on stressful thoughts and underlying trauma.
This also explains why therapeutic tremoring has helped many with CFS. By releasing chronic tension and trauma out of the system, the chronic FFF response relaxes a bit and this helps the system recover and function more normally.
When it comes to the modality I currently find most helpful (Vortex Healing), I plan to focus more on my FFF response.
Why do we see a FFF / CFS connection? I am not sure. CFS often follows an infection like mononucleosis. I wonder if the body’s response to the infection somehow leads to a chronically active FFF response?
Note: I intentionally used the more broad FFF term as I didn’t want to focus too much on any single component of it. FFF involves more than any single system in our bodies and far more than what we currently are aware of. For instance, there is this recent article about the role of the bones in FFF: Bone, not adrenaline, drives fight or flight response.
Update December 2019: I just found an article on possible damage to the brain stem in people with CFS/ME. This is very interesting and can explain why the flight/fight/freeze response is chronically active for many with CFS. A virus and/or inflammation may have damaged the brain stem, which in turn causes the FFF response to be chronically “on”.
Update April 2020: Something felt off in the way I looked at flight/fight/freeze and CFS and I felt I was missing something. What I was missing was a fourth way of responding: fold. It seems that CFS is more connected with the fold response. It’s one way of folding.
I have Chronic Fatigue Syndrome (CFS) and although I am mostly interested in how to heal from it (and live with it), I am also interested in CFS in general.
And that includes the label and how people may perceive CFS based on the label.
It’s easy to understand why CFS became the popular name for the condition. It’s simple, catchy, and relatively easy to remember. And it was created before the condition was well understood. (Not that it is well understood even now.)
And yet, the name itself can lead to misunderstandings.
Is it chronic? Yes, in the sense that it’s often long lasting. But people do heal from CFS, even after many years of illness, and with a diagnosis and symptoms that match all the criteria. Often, it requires working with specialists in the field and using a holistic and comprehensive approach.
Is it mainly fatigue? Yes, fatigue is a major component. But it’s far from just a longer lasting form of regular fatigue. It typically includes a lot of additional debilitating symptoms such as worsening after any (physical or cognitive) exertion, brain fog (a sense of “cotton in the head” along with impaired cognitive function and executive functions), aches and pain, digestive problems (leaky gut), hypersensitivity (to light, sounds, chemicals), and more. There is a long list of sometimes obscure, inexplicable, and weird symptoms shared by most or many of the people who are diagnosed with CFS.
The condition is not created by what causes regular fatigue. Often, it comes after an infection, typically Epstein-Barr.
And what can bring recovery is different from a regular fatigue. Rest is important but not sufficient. Often, a comprehensive approach is needed focusing on nutrition, learning to navigate life with the illness, and in general supporting our system in recovering in any way possible. For me, this support comes from a combination of rest, nutrition, working on emotional issues, mindfulness, energy work and so on.
Is it a syndrome? Yes, it is a syndrome since there is that long list of symptoms. I suspect it’s called a syndrome mostly because the condition is not well understood. Most illnesses have many symptoms without being called a syndrome, so when we understand it better and know more about what causes it, we may well give it a name that doesn’t include the word “syndrome”.
So what about the name chronic fatigue syndrome? The name can give the impression that it’s a longer lasting case of regular fatigue, and perhaps that its causes and remedies are similar to those of regular fatigue. But that is far from reality. The symptoms are more and different, the causes are different (although not fully understood), and what helps recovery is different.
A couple of days ago, I saw a discussion thread in a Facebook group for a more general healing modality (Vortex Healing). Some people responded with suggestions that seemed to assume that CFS is a variation of the regular fatigue most people experience now and then. And that was the seed of this article.
This video from The Optimum Health Clinic is about chronic fatigue (CFS) and it’s something I very much relate to.
Since we don’t know exactly what causes CFS and we often need to take a comprehensive and integral approach to manage it and perhaps heal from it, it’s easy to think that we have to fix everything to recover.
I am just like the client in the video. I know it’s probably not true, but I still often feel and act as if it’s true. I keep working on emotional issues, nutrition, diet, herbal medicine, regulating my activity levels, mindfulness, prayer, heart-centered practices, energy healing, being honest with myself and following my guidance, and much more, in order to see if I can recover from the CFS. At one level, it’s a wise, comprehensive, and integral approach. At another, for me, it sometimes has an element of compulsiveness.
It can be the same with healing from trauma since it’s often a set of emotional issues tied together, and we can always find additional related and underlying issues to address. We may have the idea that we need to fix everything before we are OK and can relax and enjoy life again.
And it can be that way with awakening as well, in whatever way we understand awakening. We keep going at it, perhaps from many different angles, and don’t feel we are OK or can relax until we “arrive” at some imagined place or state.
We may know – and perceive in immediacy – that all is the divine and perfect as is. We are also aware that there is room for improvement in terms of befriending our experience, clarity, healing, maturing, and living from our experience of all as the divine (Big Mind). And we may be genuinely drawn to keeping exploring all of this and deepening in it.
And for some of us on a spiritual path, it can feel a bit compulsive and we have the idea that we have to fix everything about ourselves before we are OK and can relax.
It’s very natural and understandable if we have some compulsion in our healing or awakening work. It’s even helpful. It creates an extra needed momentum and especially early on in the process.
And yet, at some point, it’s helpful to address the compulsion itself. Where does it come from? Is the voice in me driving the compulsion true?
Often, the compulsion is a reaction to believing that we are not OK and not enough as we are. We try to improve ourselves in order to get somewhere or get something we believe we don’t have. We may also have a belief that we need the compulsion in order to get anywhere and fear that we’ll stagnate without it.
None of that is really true, and as the compulsion relaxes, we may discover a few different things. We may find that it’s OK to take time to relax and enjoy our life as it is, and we may find we are more able to relax and enjoy it. We may also find that we are still moved to explore and invite in healing and awakening, and that there is a deeper calling or curiosity that’s not dependent on compulsion, a sense of lack, or (unquestioned, unbefriended) fear.
So the compulsion itself is not good or bad. It can be helpful in certain phases of our process. And it is driven by something in us that’s out of alignment with reality, so at some point, life invites us to notice and address it.
By doing that, we may find a deeper sense of contentment and OKness as we are. And that from here, we are more free to enjoy life and even to keep exploring and inviting in continued healing, maturing, and awakening. We lose the compulsion and we gain deeper contentment.
I should add that if our exploration was largely driven by compulsion and a sense of lack, we may let the exploration go after we resolve this sense of lack. We may be very happy to just enjoy and live our life without this element of exploration. And that’s more than OK too.
What are the gifts of chronic fatigue (CFS)? What are the genuine gifts in it for me?
It supports healing, awakening, and humanizing. Just like life in general, when we are receptive to it.
It invites a deep healing of the bodymind. In my case, it invites me to notice any stressful beliefs and find what’s more true for me (The Work). It invites me to find healing for anything that comes up and is triggered by the illness and life situation. It invites me to find healing for any emotional issues that may weaken my system (they all do) and contribute to the illness. It invites me to strengthen, clear, and balance my body and energy system in a variety of ways – through food, herbal medicine, bodywork, energy work, nature, and more.
It invites awakening. It invites awakening to (and out of) beliefs and identifications, and especially those triggered by my situation. It invites noticing what’s happening in me – including the emotional pain – as happening within and as what I am. (Not noticing that is extra painful so there is an inherent incentive to notice what it is happening within and as, and find what I am as that.)
It invites humanizing, becoming more deeply human. Having a serious illness, and having a lot of unprocessed emotional material surfacing, and also making decisions “out of character” because of it, is very humbling. It can be deeply humanizing. This is all universally human. What I experience has been and is experienced by innumerable others.
In addition….
It invites learning about health and healing, and what works for me in my situation. I have learned about CFS and Lyme and Lyme co-infections. I have learned about what foods and herbal medicines work best for me (I had a pretty good sense of that from before). I have learned about a range of modalities for healing the body and mind.
It invites deep rest. Not only in a conventional sense, but a deeper rest through healing, awakening, and humanizing. (Emotional wounds, taking ourselves to only be separate, and trying to be better than or different from others is inherently stressful. When we heal, awaken, and humanize, we find relief and a deeper rest.)
It has given me time to rest, notice, and explore, including to explore these topics.
It has given me experiences, insights, and skills I can share with others and that may be useful for some others. I have been given a lot from others (everything including my life), and passing on just a little bit that’s helpful for others makes me very grateful.
And last but not least, my situation has motivated me to seek deep healing, awakening, and humanizing. It has given me an extra motivation and perhaps sincerity. It has made me willing to be extra humble (sometimes) in order to find healing, awakening, and humanizing.
Would I have chosen to not have had these health problems? Yes. Do I see the genuine gifts in them? Yes. Did I ever have a choice? No. This was chosen by life. It’s happening within and as all of existence. It’s the play of life, or the universe, or the divine.
For me, Chronic Fatigue Syndrome (CFS) has come with many genuine gifts.
Of course, it’s important to acknowledge all the challenges that come with it. CFS and any chronic condition can bring up grief, anger, struggle, threatened identities, and unresolved issues. And it can lead to loss of work, relationships, money, status, and so on.
But we also have to acknowledge the genuine gifts that can come with CFS to get a fuller picture. These are gifts we may intentionally notice, explore, and even pursue (at least in periods where we have some energy besides what’s needed for basic daily tasks).
Here are some I have found for myself:
It has helped me with my spiritual practice.
From putting effort into my practice, I have found ways that are far less effortful. For instance, even when I did Shikantaza practice (“just sitting”), I put more effort into it than I needed. Now, I am happy to just notice, allow, and rest with what’s here. And that’s a more genuine way of doing this most basic meditation or noticing practice.
Also, since I have been more raw in periods, due to the CFS, I have been able to notice, meet, and inquire into unloved and unexamined parts of me that previously didn’t come as much to the surface.
Earlier, even if I saw all as Spirit, at a more visceral level I tended to associate Spirit – or at least awakening – with certain feelings and states (even if I knew that wasn’t the case). Now, I am able to more viscerally experience what’s here as Spirit including what’s challenging and uncomfortable. (This is still a process, I imagine it will continue to deepen.)
I have explored and delved into a range of new (to me) practices. I have to admit that this has been my tendency my whole adult life, so I probably would have done that anyway. Although the sense of urgency has perhaps been a bit stronger because of the health-related challenges.
It has given me time. And I have used this time to: Rest. Spend time in nature. Explore and investigate the topics I write about here. Explore and investigate other things in life that I tend to not write about or write less about. (Since I want to keep this blog somewhat focused.) Find deeper healing for my relationships with the world, others, myself, and my life.
It has come with an invitation to drop facades and be more honest with myself and others.
I have learned something about how it is to face challenges in life. In my twenties, I often had the thought that life was too easy. Now, I know something about going through challenging periods of life.
I have learned about a range of new (again, to me) approaches to healing, including some I may have been less interested in otherwise. For instance, herbal medicine, therapeutic tremoring (TRE), and Vortex Healing.
I have found a deeper appreciation for the simple things in life: a cup of tea, resting, friends, family, nature. I always appreciated these, but it’s different now.
I have found a way to often be genuinely content, and with a deep appreciation and gratitude for my life as it is.
Of course, it’s not all a dance on roses. There are still daily challenges. I sometimes get frustrated when my body doesn’t play along as I think it should (most recently today). I sometimes get annoyed and sad when I consider the many losses connected to health challenges. I sometimes get angry when things are not as my mind thinks they should be. I still sometimes have fear or concerns about the future. I sometimes feel embarrassed when I consider how others may see me. I have small flashes of envy when I see someone living the life I did or thought I would at this time in my life. But all of these experiences are part of being human. They are here to protect me, and they come from deep care for me. And they do happen within and as what I am. And there is often deep gratitude for my life as it is, including all the challenges.
From my own experience and that of others, it seems that therapeutic tremoring (TRE) can be very helpful for people with chronic fatigue syndrome (CFS).
Since it releases tension out of the system, it can help improve sleep, reduce anxiety and depression, and lead to more comfort and well being in general.
Equally important, therapeutic trembling may allow energy tied up in tension to release and thus become available to the (other) needs of the system.
Both help with everyday functioning and both may support the system in healing itself.
There are some TRE precautions for people with CFS. Mainly, do the tremoring for only short periods at first, and follow the signals of your system. As your system gets more familiar with it, and you get more familiar with how it responds, you can increase the frequency and length of the tremoring sessions.
Several notes:
I use the word “system” here instead of body, mind, or even bodymind. I could say “bodymind system” since I am referring to the whole of the human being, body, mind, and all. When I use the word “tension” that similarly refer to tension as having body and mind components.
When I say “trembling” or “tremoring” it’s a lot more than just trembling. It can be any kind of movement (autonomous, not created through intention) including “butterflying” of the legs, slow rhythmical movements, shaking, subtle vibrations, stretching, jumping, sounds and more. All ways the bodymind – outside of our conscious awareness and intention – invites tension to release when it’s allowed and invited to do so.
And when I put TRE in parenthesis after “therapeutic trembling” it’s because TRE – Tension and Trauma Release Exercises – is perhaps the simplest way to allow therapeutic trembling to happen for us modern people. Therapeutic trembling is built into us through evolution, but in our modern culture, we have learned to suppress it. We may have learned it’s a sign of weakness, or embarrassing, or that it means we are out of control (and that’s bad), or we don’t understand what it’s for, or we just have a general suspicion of the inherent wisdom of the body, or we simply think there is no inherent wisdom in the body. For whatever reason, we have learned to suppress it, so we need to unlearn and allow the trembling to happen. And TRE is a good tool for just that.
Also, I should say that although it seems that therapeutic trembling can significantly help people with CFS, the extent will vary between people. It does require sticking to it for a long period of time, over months and years (although the progress will be noticeable from early on). And the underlying medical conditions may vary between people since CFS is an exclusion diagnosis.
How do I approach my Chronic Fatigue Syndrome (CFS) and brain fog?
We are one seamless system, so it makes sense to take a holistic, pragmatic, and ecletic approach. To use whatever works and approach it from many different angles. At least until the causes are more pinpointed and/or we have found simple and effective treatments.
Here are some things that have been helpful for me.
Rest. Avoid excertion.
Nature. Walks.
A diet that works for my body. In my case, eating less processed foods, low on the food chain, and organic and local as possible. Mostly vegetables and some meat and fruit. Mostly avoid wheat, dairy, and sugar. Listen to the body. Follow the body’s guidance.
Herbal medicine. For me, right now, eleuthero, echanacea, kapikachu. Stangeland’s herbal tea.
Resting with/as what is. Allow. Notice. (Shikantaza, “just sitting”.)
Western medicine. Check for deficiencies, organ problems, known illnesses with similar symptoms, toxic mold exposure etc.
Mindful body-centered activities. For me, it’s Breema but it could also be (and has been) Tai Chi, Chigong, and yoga.
Therapeutic trembling to release tension and trauma. Over time, this releases and frees up energy previously bound in tension. For me, through Tension and Trauma Release Exercises (TRE).
Befriend the symptoms and my life. Change and heal my relationship to the symptoms and my body, myself, others, and life. I mostly use ho’oponopono and tonglen, and also inquiry and Vortex Healing.
Use the CFS and my life situation as an opportunity to see what’s left to heal at an identification and emotional level. As above, I am mostly using inquiry, ho’oponopno, and Vortex Healing for this.
Explore and find healing for any emotional issues that may have contributed to the CFS and Brain Fog (created a weakness, suseptibility). E.g. wanting to avoid life, finding refuge in the CFS. Again, inquiry, ho’o, and Vortex Healing.
Seek out and strengthen nourishing relationships. Heal stressful ones (at least from my side). Limit those who drain me.
Organize my life, as much as possible, so it’s simple and nourishing.
Use energy work to strengthen and balance the system, and clear physical and emotional issues contributing to the fatigue and brain fog. In my case, this is Vortex Healing.
Do more of what gives meaning in life. Zest.
And other things as I discover and am drawn to it.
A brief note about Norway: To me, taking a pragmatic holistic approach is natural. And that’s what I have seen among people I know in North America having similar health issues.
But in Norway, I have sometimes noticed a strange polarization between those taking a psychological approach (Lightning Process etc.) and those favoring a physical approach (which partly means waiting for doctors to find a treatment). They seem to overlook that we, as human beings, are one seamless system and that the mind-body distinctions is imagined. By taking imaginary sides in that way, we limit our options. And that doesn’t make sense when it comes to something as important as our health. It makes more sense to take a holistic and pragmatic approach. And, of course, many in Norway and everywhere else do just that.
I just returned from Core Veil in London, a Vortex Healing course with Ric Weinman. I feel it helped clear, stabilize, and perhaps deepen a lot of the haphazard openings and awakenings from my pre-Vortex Healing days. And the course seems to also have strengthened my system considerably.
Over a couple of tea-breaks, Ric took a look at my chronic fatigue (CFS) and brain fog. He said it seems that a CFS (inducing) virus is still hiding out in my system (which would explain a great deal), and did a couple of brief treatments to clear it out. It will take some time for my system to adjust to a potentially virus-free existence. We’ll see how it unfolds.
A few words about viruses and CFS: There are probably many things that fall under the CFS label, including undiagnosed known illnesses and various subgroups of “true” CFS. Sometimes, CFS is called Post Viral Fatigue Syndrome which is fitting since it often comes after a viral infection. (For me, mononucleosis in my teens.) Many of the symptoms associated with CFS fit a viral infection. For me, it feels like having a flu – sometimes strong and sometimes less so – without the fever, runny nose, or cough. The brain fog and wooziness is there. The fatigue and tiredness. Worsening condition after exertion. Brain fog and inability to focus as before. Unusually sensitive to noise and sometimes light. Wanting to lie down and rest. (Or being unable to do anything but lying down.) And a rest that often doesn’t feel restful or nourishing. All of that is similar to having a flu or a similar infection.
If there is/was still a virus in my system, it also explains why the energetic work seems to actually work – in clearing and energizing pathways and chakras and doing many other things – but it doesn’t significantly change my overall health situation. The virus holds it back. So we’ll see what happens if a hidden virus was the key and the virus now really is gone.
The body-mind is a seamless system, as is the individual and the larger social and ecological wholes. It’s all a seamless system.
Chronic Fatigue Syndrome (CFS) and other mystery illnesses function as a reminder of this. To understand it, manage it, and treat it, we need to take a broad and inclusive approach. At least, unless they find one simple solution to curing it (which may happen).
For now, it seems that different approaches work for different people in terms of managing it and sometimes healing from it. Activity management is a universally helpful approach to managing CFS, perhaps since we all do it anyway. It’s part of human life. And some have healed themselves through yoga, or some form of cognitive therapy, or herbal medicine, or eating more, or through other approaches.
In my case, what preceded the CFS, the symptoms, and what helps, is not original. The initial onset was preceded by mononucleosis, perhaps combined with typical teen stress which put an extra load on the system. I got much better after a few years, mostly because I found myself in a situation where I could manage my schedule more freely. When there was a relapse of the severe CFS many years later, it was after severe pneumonia that I wasn’t able to completely recover from.
It’s also clear that it’s connected with food intolerances (which makes the symptoms worse). And it may be connected to mold since I lived in a basement when it first happened, and I lived in a house in Oregon with mold problems when I had the relapse.
My approach to managing and healing from CFS includes:
Avoiding foods my body reacts to. (Dairy, wheat, sugar.)
Regulating my activities. Rest when needed. Do a little less than I feel I can (to avoid crashes).
Natural rest, inquiry, heart centered practices. This helps me change my relationship to the CFS symptoms and it’s impact on my life, and also explore any issues that may in any way contribute to it.
Tension and Trauma Releasing Exercises (TRE). TRE releases tension out of the muscles, which in turn frees up energy.
Eating enough. It seems that this is a peace of recovery for many. Making sure the body has enough calories and nutrients to have a good metabolism. (Also, recently adding a small layer of fat to my body has helped me avoid energy crashes.)
Vortex Healing. This has helped me greatly although it’s also a slow(ish) process. I have used it to clear the mono-virus that was still in my body when I started with VH, clearing and optimizing my energy system, and also working on emotional issues impacting my physical health and energy levels.
The Vortex Healing approach to CFS and similar health issues is a reminder of what I mentioned above. It’s best to take a broad and inclusive approach and leave no stone unturned. Prioritize and explore.
Note: I was motivated to write this by a somewhat odd discussion in a Norwegian CFS Facebook group. Some seem to take the view that cognitive therapy approaches can heal CFS (which it can for some but not others), some that it’s a purely physical illness (it certainly has that component, and that’s where a “magic bullet” cure may be found eventually), and some take a more inclusive view. As I mentioned above, with any mystery illness it makes sense to take a broad and inclusive approach and leave no stone unturned.
I have had CFS since my teens, and especially strongly in two periods (including right now).
From the beginning, I knew that food played a role in how well I do. The type of food plays a role, as does when I eat, and – as I discovered more recently – having some minimal fat reserves.
Type of food. I tend to do best when I eat mostly vegetables and meat, with smaller amounts of grains and fruit, and minimal to no dairy and sugar. The less processed the better. And I prefer organic and locally produced food. I am from Northern Europe, and I notice I do well on traditional Northern European foods. Perhaps it’s genetics, or just what my body is used to, or the climate, I don’t quite know.
I especially like warm food that’s delicious and easy and quick to prepare. Slow cooked stews with bone broth is a favorite.
When I eat. I tend to eat relatively frequently. My main meal is often breakfast, and it’s often vegetables and meat. Lunch and dinner are typically similar. Although I do mix it up according to what I notice I am drawn to. It’s good to not be too strict. (For instance, I had muesli with kefir a couple of days ago and it felt right and good then. And I do sometimes eat chocolate.)
Fat reserves. I have been slim to skinny my whole life, and unable to put on weight even when I have intentionally tried to. This spring, I did a combination of Vortex Healing and using an app in order to put on more weight, and it worked within a week. (The Vortex Healing was for my digestive system and to support my body in absorbing and making use of nutrients.)
I am now up to 84kg (184cm tall) and have a minimal to moderate layer of fat on my body for the first time. It feels like an important and helpful buffer for me. I used to have energy crashes if a meal was delayed or I missed a meal. Now, that doesn’t seem to happen anymore. Joey Lott and others talk about the importance of eating enough in order to deal with and perhaps recover from CFS, and that fits my experience as well.
Additional notes. As I mentioned above, I am not terribly strict in my diet. Now and then, I do eat some grains, some dairy (cheese, kefir), and some sugar (mostly in the form of chocolate). I also find that butter seems to really help me, so I tend to melt butter on most warm meals. I should also say that I do some strength training and typically walk a good deal, so I try to stay as fit as I can within the limitations of having CFS.
Here are some things I have found helps my physical energy.
Herbs. Adaptogens can be very helpful, along with more targeted herbs. I have been greatly helped by taking certain herbs under the guidance of an experienced herbalist. (Right now, I take eleuthero, echinacea, and kapikachu.)
Bone broth. This also helps my deep physical energy. Here is the recipe I use:
Roast bones, 375 degrees, 25-30 min.
Cover with water, add 2 table spoons of apple cider vinegar. Use a slow cooker if you can.
Simmer on low heat, cover with water. (Leave the foam bc of nutrients).
Replenish water as needed.
Simmer for 48 hours.
Cool rapidly, freeze in small(ish) portions – for instance in small containers or ice cube trays. Use in meals or take as broth daily, especially during fall and winter.
Nature. Rest. Food. Spending time in nature. Get plenty or rest and sleep. (Live well within my means when it comes to energy.) Eat low on the food chain. Eat mostly unprocessed foods. Chose foods that work for my system. (In my case, mostly avoid sugars, dairy, and wheat. Eat cooked food during cold months, and more raw foods when it’s warm. Since I have dampness in my system, foods with heat help my energy.)
Vortex Healing. Vortex Healing has helped me greatly over the last year or so. My digestion is much better than it was, as is my general energy level. And it continues to improve.
Since childhood, I have been quite sensitive to a range of stimuli, especially sounds (noise, eating sounds, paper rustling), certain foods (sugar, dairy), chemicals, heat, physical exertion, and more.
I notice that my sensitivity is related to how well I feel in general. When I feel stronger and/or feel good about my life, I tend to be less sensitive. When I feel more fatigued or vulnerable, and I am less happy about my life, I become more sensitive.
Also, I assume these sensitivities are a type of “allergic” reaction. It’s my system reacting strongly to stimuli that in themselves are relatively harmless. My system seems to respond as if it’s a life and death situation, when it really isn’t.
That’s why retraining my system’s response seems important. How do I retrain or reprogram the stimuli-response reaction? How do I help my system respond with calmness to the stimuli that previously have triggered a strong reaction? One way is to feel the response in my body, and rest with it. As I rest with it, I am signaling to my system that it’s OK. There is no life-and-death situation here. It’s OK to relax. It’s OK to be OK with it.
Joey Lott writes about this, and it’s also an inherent part of Natural Rest and the Living Inquiries. In Natural Rest, I notice what’s here and allow it as is. I may even say “I love you, stay as long as you like”. In the Living Inquiries, I look at images and words, and feel sensations, which invites the “velcro” to release. (Sensations that seems “stuck on” images and words, lending them charge, and a sense of reality and solidity.) Both signal to my system that it’s OK. The stimuli is OK, whether it’s a sound, image, or sensation. It’s not life threatening. It’s OK for my system to respond in a relaxed way. It’s even OK to find love for it.
Said another way, when there is velcro (or a belief, or identification, or a psychological knot), the stimuli may trigger a strong and unpleasant reaction. It’s an over reaction, in a conventional sense, although the reaction is appropriate to the underlying belief, identification, velcro, or trauma. And this looks like sensitivity.
There is a sound. The sound itself is harmless. My system responds strongly, with a fight or flight or freeze response. It’s alarmed. It reacts that way due to a belief (or identification, velcro, trauma). And that stimuli-response pathway can be changed. My system can learn to respond in a more relaxed way, through inquiry, or Natural Rest, or just feeling the sensations of the reactions and resting with these sensations. In each case, I am showing my system that it’s OK. It’s OK to respond in a relaxed way. There is no life-and-death situation here.
Another way to work with this is Tension & Trauma Release Exercises (TRE), allowing the body to release tension and trauma through it’s natural and inherent trembling mechanism. (Spontaneous trembling, shaking, rocking, stretching.)
A couple of notes:
I included physical exertion above. I suspect that chronic fatigue fits into this pattern of stimuli followed by an exaggerated response. The stimuli is physical exertion, and the response is fatigue. It may be a type of freeze response. This is not the whole picture of CFS, but it may be a part of it for many. (I suspect there is a great deal of individual variation here, and another part of the picture is physical problems such as mineral and vitamin deficiencies, viruses, auto-immune illnesses and more.)
Similarly, fatigue itself may be the stimuli, and the system responds with increased fatigue. This can also be retrained, in the way described above. It’s at least worth a try. And inquiry can be invaluable in this process.
Is X a threat? The physical exertion? The fatigue? The brain fog? These sensations I label in that way?
Can I find X? Fatigue? Exertion? Brain fog? Someone who has these?
Is there a command to X? To escape a situation? For the fatigue to go away? For the brain fog to go away?
I am intentionally avoided using the term “nervous system” above. It’s obviously important in this context, but there is clearly a lot more going on than just the nervous system. Our whole body-mind is included.
One way the nervous system plays a role, is what happens when the sympathetic nervous system (flight/fight/freeze) is chronically activated. This leads to the parasympathetic part of the nervous system being less active. And this, in turn, leads to diminished immune function, digestion, and more, which in turn can lead to a range of health problems. Teaching the nervous system to relax – in general and when faced with certain stimuli – helps our overall health. It makes the body better able to heal itself.
It can be physiological, often from lack of sleep. It can have a significant mind component. And perhaps quite commonly, there is some of each.
In inquiry sessions – both as client and facilitator – I notice that an almost overwhelming tiredness can set in, often when the client is looking at something with a lot of velcro and seemingly threatening. When tiredness is brought consciously into the session, the experience of it can shift, and it also tends to mysteriously vanish after the apparently threatening images, words, and sensations have been more closely looked at. It may be that this tiredness is a form of protection.
In life, it may be similar. I wonder if not a part of chronic fatigue is the same impulse to protect. The tiredness is a form of protection, and if so comes from innocence, deep caring, and worried love. Tiredness protects me from being out there in the world, with all its apparent dangers, risks, disappointments, and more. (And that doesn’t mean that there isn’t a very real physiological component to chronic fatigue, and perhaps even in the cause of chronic fatigue.)
Some ways to explore tiredness:
Living Inquiries.
Rest with the tiredness. Notice. Allow.
Feel the sensations. See how it is to be curious about them. Feel the sensations as sensations. (As much as possible. This may be much easier after doing the following inquiry.)
Inquire into the sensations, and any associated images and words. Is it a threat? Is it tiredness? Is it someone who is tired?
Kindness.
I love you.
I am sorry. Please forgive me. I love you. (Ho’oponopono.)
Holding satsang with.
You are welcome here.
Thank you for protecting me. Thank you for your love for me.
What would satisfy you forever?
What are you really?
Dialogue/mining.
How does X relate to you? What advice do you have for him/her?
What does it mean? What would is say if it could speak?
What does it need from you?
In my experience, the kindness can be very helpful in reorienting and relate to it differently, and the dialog can do the same. What really helps is resting with what’s here, and especially feeling the sensations of tiredness, and looking at the associated images and words. When the velcro is loosened, it’s much easier to feel the sensations as sensations, and the associated images and words are recognized as images and words.
The sense of tiredness may get thinner or lifts. Or there is still a more physiological tiredness here (from lack of sleep usually) and it’s OK, it doesn’t seem like a problem, and it doesn’t have as many overlays of images and words.
This is similar to how physical pain can be explored.
Finding how my life has value in the absence of doing. (And how that’s true for others as well.)
Learning to slow down, rest, take care of myself.
Learning to put my needs first, and communicate about it.
Questioning and having to let go of identifications with doing and achievement related identities.
Learning about my body and mind, how beliefs influence my experience of health etc.
Learning about healing modalities, learning about CFS.
Having time to relax, enjoy myself, learn, be.
Having time to notice what’s here, find curiosity for it.
Finding new appreciation and value of any life, independent of doing and activities in the world.
Questioning my labels, including the basic ones of fatigue, pain etc.
Noticing the effects of beliefs on how I experience my mind and body, my life in the world.
Realizing in a new way that “I” am not in control. If life goes somewhere, that’s what happens. If life doesn’t go somewhere, it doesn’t.
Being unable to push away or set aside uncomfortable experiences – emotions, sensations, images, thoughts. Invitation to be with them, with curiosity, instead of setting them aside as I used to.
Modeling this for others, sharing it with others through words and how I live my life.
