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 am deciding what to include in my life in the coming weeks, months, and possibly years.
A friend of mine gave me a pointer: Notice what gives you energy. If it gives you energy, it may be worth it.
That’s normally sound advice, and I am sure it works for her and many people.
For me, it’s different. I live with Chronic Fatigue Syndrome (CFS), and that requires different considerations and a different lens.
For me, any activity takes energy and requires rest before, during, and after, and it all comes with a recovery period. If it’s gentle and brief activity, like a short conversation, hours may be enough. If it’s more, then the recovery period may be days, weeks, or even months. If I stretch it too far, it can lead to a CFS crash and being bed-bound for a long time. It can even cause a permanent worsening of my condition.
Nothing gives me energy, apart from complete rest, silence and nature, and possibly Vortex Healing energization and some herbal medicine. Everything else takes out of my limited energy budget, often a considerable amount.
An activity may be meaningful and nourishing at a human and soul level, and it may be worth it even if it means a long recovery period, but it does not give me energy.
The pointers I use for myself are: (a) What are my priorities? (b) What can I exclude? (c) What can I include without risking crash, collapse, and permanent worsening of my condition? (d) How much buffer makes sense? (e) What do I want to include that’s worth it, in spite of the recovery time?
This is an example of how guidelines that may work for most people often don’t work for those of us with CFS or another chronic illness. What works for you may not work for me, and may even be damaging to my health. And what works for me may not work for you, at least not without considerable modification to fit your situation.
We are different and live in different circumstances, so we need different pointers.
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.
I have an invisible disability, and that comes with social challenges in addition to the ones that come with the disability itself.
In my case, it’s Chronic Fatigue Syndrome (CFS/ME). I have lived with it since my teens, although it got much worse some years ago.
WHEN IS IT INVISIBLE?
In what sense is it invisible?
It’s “invisible” to you if…
You didn’t know me from before I got it, or only from when I functioned better (my twenties and early thirties.)
You only see me on good days and after days of rest. (That’s almost everyone.)
You see me during short periods when I am able to mobilize and exert myself, often more than I should.
You don’t see me when I crash. You don’t see the consequences of mobilizing and doing more than I should, which often are severe and can last days or weeks and sometimes even longer. (Very few do, and those who do are often shocked.)
You have relatively brief interactions with me. (My ability to engage tends to fade relatively fast.)
You have seen in me in groups. (In groups, I tend to leave the active engagement and talking to others so I can rest.)
WHEN IT’S NOT INVISIBLE
To me, it’s certainly not invisible.
I have lived with it for a long time. My life has been dramatically changed because of it. Many if not most of my dreams and plans for this life had to be abandoned.
In daily life, I notice it by the fatigue, the few minutes each day when I am able to do something, poor memory, poor ability to read or take in information, all the strategies I need to use to try to compensate for this, and so on.
To those close to me, it’s also not invisible. They see the rest required before and after any activity, and how brief the periods of activity are. Even those close to me don’t always realize how serious it is. As others, they sometimes think I can function better than I do, or attribute what’s clearly (to me) caused by the illness to personality. This is one of the more painful aspects of the disease. (I had a recent statement from my doctor about my illness, and people close to me seemed a bit shocked when they read it.)
WE FILL IN THE GAPS WITH WHAT WE (THINK WE) KNOW
What’s so difficult with an invisible disability? What’s the extra layer of difficulty beyond the challenges that come with the disability itself?
It’s mainly that others fill in the gaps with what they think they know.
They see me for a few minutes on a good day and after days of rest, so I may appear to function relatively normally. Based on that, they assume that’s how I am the rest of the time.
If they don’t see me or hear from me for a while (weeks, months, years), they assume I am busy with something else. In reality, I am often wiped out and in bed and don’t have the resources to do much beyond the essentials to get through a day.
They attribute what they see to personality. By nature, I am at the high end when it comes to ambition and activity levels. During my twenties, when my health was better, I would fit in several lives into one. (University studies, art, meditation, reading, photography, etc.) These days, I can’t do much apart from resting, so some may assume it reflects my personality and don’t realize it’s because of the disability.
They notice some of the strategies I use to appear to function more normally, and attribute that also to personality. For instance, they may see me quiet in groups and assume it has to do with being shy and that I function better than I do.
In the case of CFS, the label itself can be misleading. It can sound like a lasting tiredness, which is a minor part of a much more serious, complex, and debilitating disability.
FUNDAMENTAL ATTRIBUTION ERROR
I notice the fundamental attribution error frequently when it comes to my own invisible (to some others) disability.
The fundamental attribution error is when we see a certain behavior, and think it’s about the person and not the situation and circumstances.
Of course, some does belong to the person. We are all responsible for how we relate to life, and there are some differences in how we do just that. At the same time, a lot of our behavior can be explained by our situation, circumstances, and our history and the culture we grew up in.
I notice that relatively often. People don’t know me, or don’t me well, or don’t see me flat 95% of the day or in a crash. They see a certain behavior. Maybe that I don’t talk much, or need to rest, or am not very physically active. Or even that there is fear coming up, or that I am grumpy. They attribute that to me and how I am.
They don’t know the bigger picture of the illness and it’s symptoms. The fear that comes up when you can’t function well and risk getting permanently worse through activity. How society and people don’t understand and often don’t meet you with much understanding. And so on.
If they knew, the resting would make sense. The anxiety (survival fear) that comes up in some situations makes sense. The occasional grumpiness (when my system is crashing) makes sense.
HOW TO COMMUNICATE THE SERIOUSNESS OF INVISIBLE DISABILITIES
So how can we communicate the seriousness of invisible disabilities?
One is to use the term and get it out there. The term itself invites some curiosity and, hopefully, a realization that some serious disabilities can be invisible to the casual observer.
I tend to say I have a disability without explaining more, unless they ask. That gets the point home since people know, more or less, what a disability is, but may not be familiar with CFS and how serious it is. I used to say “I have CFS”, and that often led to people dismissing it. (Including several times at university, with serious consequences for me.)
If I need to, I have learned to describe it as a serious disability. It is serious, and it hopefully gets the point home better.
On rare occasions, I may describe the experience of living with CFS. It’s like having a severe flu without the throat and nose symptoms. It’s like being underwater. It’s like living in a fog. It’s like being a laptop with a very poor batter that doesn’t charge and drains quickly.
I may also describe what I can and can’t do, and what my daily life is. I am in bed most of the time. On most days, I can do things a few minutes now and then, with hours of required rest in-between. I am unable to do anything that’s especially exerting, like reading a book, lifting something heavy, walk fast or run, and so on.
I may try to describe the brain fog. The immediate experience is of living in a fog, or having cotton in and around the head. I am unable to process information very well. I can’t read books or longer articles, or anything complex. I can watch movies in short segments, maybe 5-10 minutes at a time. I can hold a conversation for only a few minutes. I often have trouble finding words. My memory is very poor.
I may mention the Post-Exertion Malaise (PEM), which is one of the most debilitating and confusing aspects of the illness. After exertion, and in the best case, I need hours or days of rest. In the worst case, and very often, I crash. All my symptoms worsen dramatically, I lose my ability to function, and I am in bed without being able to talk. This can last for days, weeks, or sometimes months.
There are websites and brochures I can share that describes the disease. I haven’t done this very often, although it probably would have been a good idea and could have made things easier for me.
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.
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.
I have a disability that’s invisible (if you meet me casually), not yet well understood by science, and happens mostly to women.
That’s a difficult combination in today’s society.
INVISIBLE DISABILITIES
People – including some doctors – tend to take invisible disabilities less seriously than visible ones.
I was reminded of this when I saw Super/Man: The Christopher Reeve Story last night. It’s wonderful that doctors, family, friends, and society in general took his situation seriously and gave him the support he needed. (His challenge seemed to be that he lived in the US and had private insurance with a cap.)
It’s less wonderful when we don’t receive the same understanding and support because our disability happens not to be visible, at least not to the casual observer.
If you see me, you usually see me because I have a good day and you see me briefly. If it is a planned meeting, I have cleared my schedule for several days before and after the meeting because I need 100% rest to be able to do it. Also, my condition typically severely worsens after the meeting, often for days and sometimes even weeks. If you saw all of this and saw the struggle over time, you would at least see the consequences of living with this invisible disability.
DISABILITIES NOT WELL UNDERSTOOD BY SCIENCE
It’s similar with disabiliites not well understood by science.
They tend to be treated as a kind of pariah among diseases and disabilities.
Doctors would rather not deal with it since the diagnosis can be difficult and there is no treatment.
People in general may think it’s not a real disease, you are imagining it, you are lazy, and so on.
There is no lack of examples of diseases that were not understood and dismissed, and later better understood and taken seriously.
WOMEN’S DISABILITIES
Several of these invisible and less understood disabilities happen to be more common among women.
Or maybe that’s just a consequence of a patriarchical culture.
Diseases that impact men are taken seriously, studied, and better understood.
Diseases that mostly impact women are taken less seriously, are less studied, and less well understood.
A TRIPLE CHALLENGE
If we have an invisible disability that’s less well understood, we live with a triple challenge.
The disability itself can be immensely challenging. It has impacted my life profoundly at all levels and in all areas of life.
Having an invisible disability has led to people dismissing it, not understanding it, not understanding the severity of it, attributing the consequences of living with it to something else, and more.
The same goes for having a disability that’s not well understood by science. In addition to the above challenges, it also means that some doctors will dismiss it.
MY EXPERIENCE
I tend not to talk about my disability, and I am also unable to do much in the world. In a sense, that protects me against some of the challenging situations people in my situation can experience.
Of course, that in itself says something about my situation.
Not talking about it comes from the stigma and challenges of having an invisible disability not understood by science. If it was visible and well understood, the conversations would be easier and sometimes not even needed.
To some extent, it’s similar when I have to severely cut back on social interactions. If people understood my need for rest, it would be easier to try some social interactions. We could set it up so I have a place to rest, I would feel free to rest when I needed to, and they would understand and support it.
UNDERSTANDING AND SUPPORT
I have also experienced understanding and support. It was an enormous relief to come to the CFS center in Oslo with professionals familiar with the condition, and even more so to do a CFS retreat at a rehabilitation center in Norway with an understanding professional staff and a group of people in the same situation as me.
My wife’s family also shows understanding. For instance, last Christmas, I went to the family Christmas party and they had a bed ready for me so I could go and rest after the meal. They chatted, danced, and had fun, I had a much-needed rest, and we all got what we wanted.
A FEW CHALLENGING SITUATIONS
Here are a few examples of more challenging situations:
I had a severe worsening when I lived in Oregon, and I previously had a weekly meeting for a while with a friend. At some point, I put all my effort into one more meeting with her, but I had to cancel twice despite doing everything I could to stabilize and try to build up enough energy for that one meeting. It was my main priority. She got upset, said she was not important to me, and cut off all communication.
This dramatic worsening came after months of living with severe pneumonia. My doctor refused to treat it, saying it was “walking pneumonia”. I had been bedridden for weeks at that time and was very concerned about my health, especially considering I already had CFS. She seemed to not understand that I already had a weak and vulnerable system and needed treatment for the pneumonia.
After this severe worsening, I moved to Norway. My general practitioner doctor in Norway was updated on my situation but did nothing to help me with assistance from the government. It took months and years before he finally had a student observing in his office, and then he took me seriously and got things moving. He was willing to let it slide if it was just the two of us, and finally took it seriously when there was a witness.
More recently, I met with a doctor specializing in another field. When I mentioned I have CFS, he (literally) rolled his eyes, scoffed, and treated me with disdain for the rest of the appointment. His demeanor markedly changed. I didn’t go back to him.
Someone in my family has repeatedly said that I just need to pull myself together and get a job. If I do, I won’t have any problems with lack of money. If it was that easy, and if it was possible, I would never have been in this situation in the first person. I love to be engaged in the world and work. I am not living this life because I it’s my first choice.
Several years ago, I took a university degree that required meeting only once or sometimes twice a week. I was just about able to do it, also because the topic was already very familiar to me. At the end of the program, we had a course with daily meetings over two weeks. I knew I would not be able to do it, explained my situation to the teacher, and asked for permission to skip some of that course (and find a way to make up for it at home). I also explained that I was familiar with the topic from earlier and far more in-depth university courses on the same topic. He responded that if I missed even one day, he would make sure I wouldn’t get my degree. These two weeks led to a permanent and dramatic worsening of my condition which I still live with.
I realize that I play a role in some of this. I could have insisted more strongly with my doctor in Oregon, or found another doctor. I could have explained better to my friend, instead of just mentioning that I have CFS and think that’s enough. I could have given my teacher at the university the doctor’s notice before or instead of talking with him.
Not having had the backing I needed, for good portions of this, and the disability itself – feeling drained of energy combined with strong brain fog and confusion – sometimes makes it difficult to insist and make good decisions. This impacts everything in my life. And it’s also good to see my role in these situations and take responsibility for my part. That helps me do it differently now and in the future.
There is something I have noticed for decades in my energy system, and it seems related to the Chronic Fatigue Syndrome (CFS).
ENERGETIC HOLE & WEAKNESS IN THE SPINE AREA
For a long time, I had a kind of energetic “hole” in the spine area in the solar plexus area. It felt like the energy in my body disappeared out through that hole. Some years ago, after getting into Vortex Healing, my partner and I spent a good amount of time filling that hole with energetic structures and whatever seemed to help. Since then, and with some additional energetic work, I don’t sense a hole there in the same way and the energy has not drained out in the same way.
What I do notice is an energetic weakness in the spine area, especially in the belly and solar plexus region. I seems very much connected to the CFS. We are working on filling that area too, with energetic structures and replacing vital webbing. It helps, although it requires several sessions and top-offs.
My sense is that this weakness is connected with the third and second chakras and issues stored in those chakras. If I work on optimizing – clearing and energizing – the third chakra, a lot of old issues and unfelt/unresolved/unloved things come to the surface. Even a brief session of a minute or so releases a lot for the next one or several days, and it’s quite challenging. I suspect all of this is connected with ongoing childhood trauma.
Since my teens, I have also noticed an energetic block in the diaphragm area, separating the upper and lower body. With VH, I was able to open that so my system now feels more like one whole.
WORKING ON CFS WITH VORTEX HEALING
When we work with CFS with Vortex Healing (VH), we typically first check for a low-grade infection in the system. Often, there is a latent viral infection that stresses the system, and the system may damage itself while trying to get rid of it. With VH, we can remove this infection. In my case, it was removed some years ago. My system has been more stable since. I have avoided the “go back to start” situation I had before where I would gradually improve and then have a setback that got me back to what felt like zero.
We also optimize the different parts of the energy system (meridians, voridians, chakras) and other parts of the system. We work on emotional issues impacting the energy system and holding the CFS in place. We do energetic pujas for health.
We energize the system. In daily life, this is by far what helps me the most.
A LONG PROCESS
In a few cases, VH can help people with CFS quickly and dramatically.
Most of the time, it seems to be like it is for me. It’s a long process. There is a gradual stabilization and improvement, with some marked improvements and some setbacks as well.
As most who have CFS do, I focus on pacing, diet, herbal supplements, drinking lots of water, listening to my body, and resting before, after, and during activity and extra.
In terms of a possible mind aspect of the CFS, I am aware of and explore the patterns in me of people-pleasing, perfectionism, and wanting to hide and be invisible to stay safe.
CFS seems to impact just about every system of the body. It seems to come about through a combination of multiple stressors. So although we may find one cure for it in the future, for now, it makes sense to use a holistic approach and work on many different things to support the system.
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 had Chronic Fatigue Syndrome since my teens, and continue to explore it in different ways.
For instance, what’s the wisdom in the fatigue? What does it want to show and tell me? Where does it guide me?
FOLLOWING FATIGUE
I notice and follow the fatigue. I sink into the earth and become the earth. It’s the most profound relaxation.
I become what’s here – earth, sensations, this human self, this room, the sounds, the sun, the wind. I find myself as it all. It’s the most profound relaxation. There is nowhere to go. Nothing to be, apart from what’s already here. No identity to remember.
Something in me is quietly profoundly joyful. It’s home. It’s profoundly home.
I rest in and as what’s here, my world as it is.
FOLLOWING SADNESS
I now notice sadness. It’s the sadness of parts of me from living with CFS and it’s also much older.
I follow the sadness.
Tears come to my eyes.
A heaviness.
It sinks down to my belly, a fullness in the belly.
Just being here.
An invitation to really explore what’s here, get to know what’s here.
Why is this part of me sad? Why is this little boy in me sad? What does he want? What does he need?
I am here with him. I am here for him.
I notice the sadness is a part of me. It’s one of very many parts. There is an infinite richness here.
It’s an object. It’s an object that comes and goes within what I am.
A scream is coming up. Whueeaaaaaaa. It feels good to express, to allow it life in the world.
The sadness wants to be lived. It wants life too. It wants to join me in this life.
It doesn’t want me to be sad. It wants to join me in this life in the world. It wants to be part of it, one of very many parts. It wants to be a phenomenon among many phenomena happening within and as what I am.
FOLLOWING BRAIN FOG
I notice the wooly feeling in the space in and around my head.
I notice some sensations in and around my forehead and the label “brain fog”.
I want to make a bzzzzzz sound and make it. I wave my hands and fingers in the air (Jazz hands) and shake my head with small movements as I make the bzzzzz sound.
I sink back. My mouth opens. My head swings around. I become bobo, someone without brain.
A bird sings. I become the sound of the bird. It’s beautiful.
I become the crowing of the crow.
I become the rustling of the wind in the plants.
Without a brain, I become what’s here.
I become the voice of a main saying something loudly.
I become wonderful Simba resting on the floor looking outside.
It’s fun. It’s alive.
No brain free of brain fog is needed for this.
The bird song, the sounds of the wind, Simba resting on the floor, it’s all here. It appears. It appears within and as this clarity that’s here with or without brain fog.
I notice the clarity inherent in the sense of brain fog. The awakeness inherent in all takes that from too.
I notice images of me having fun with the brain fog with others. It becomes something amusing to mention. Something vulnerable to share. Something to connect us. Something to share in a genuine and real way. It’s an aid to become more real. To reveal what’s here, as it is.
It’s a guide to simplicity. A guide away from books and models. A guide to what’s here. A guide to simpler and more effortless noticing of what’s here. A guide to a more real and simple way of noticing and allowing what’s here, and notice it’s already noticed and allowed (by awakeness, space, life). A guide to notice I am what’s here, brain fog or not.
REFLECTIONS
The fatigue seems to invite me to find home in and as what’s here. To find a deep relaxation in and as what’s here. This makes sense since the CFS came at a time when I didn’t really have a good sense of myself and thought I needed certain identities to be accepted and didn’t feel I was able to live up to those identities. It was a kind of identity crisis, and the fatigue is inviting me to find what’s more real, simple, and already here, and to find myself as it.
The sadness can be here. It’s one of very many parts of me. It’s welcome. It’s very welcome to join this life in the world. I notice a joy in welcoming it and giving it its life as part of this far richer and larger life.
The brain fog has inherent clarity and awakeness. It’s happening as part of the clarity and awakeness that’s here and that’s inherent in this whole field of experience, in the world as it is here and now. There is a quiet joy in noticing that too.
A NOTE
This is inspired by Process Work (Process Oriented Psychology), following the processes of what’s here in me and the surroundings.
Since I have done a lot of parts work and noticing of my nature, that also comes up. That becomes part of these processes for me.
This is in honor of Arny Mindell and his wonderful work in exploring and sharing Process Work and creating a community around it.
UPDATE: This is the following morning, and there was discomfort here as I woke up. I found curiosity for it and stayed with it with receptivity and curiosity. It shifted a bit so its nature came more in the foreground, its nature of awakeness, space, and so on, just like the nature of everything in my world and what I am. I have rested in and as that this morning.
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.
I am newly in charge of a hospital and rehabilitation center. I used to favor activity and short stays for the patients. Now, I want to modernize and encourage deep and long rest, and then activities only after people are thoroughly rested and recovered. A nurse who is deeply into this way is on my side. I ask her to help me, teach me, and be in charge of the transition. An older doctor is of the old school and we talk about how to make the transition easier for him. The nurse is kind, wise, intelligent, and one hundred percent dedicated. I am deeply grateful we are working on this together.
As I woke up, I knew this dream was about the radical rest approach to Chronic Fatigue Syndrome. The night before, I had talked with a friend of mine about it and how something in me is deeply drawn to it. I told her I am dreaming about it (in the sense of waking dreaming). Now, I also have night dreams about it.
Apparently, I have a metaphorical nurse in me who is deeply into and loves this approach to recovery, and who is wise, kind, and dedicated. We are a team, and I have put her in charge of the transition since she knows more about it than I do.
The old doctor is my own old mindset about this. I used to rest to recover after an activity and then immediately get back into activities and spend the little energy that was saved up. I still notice this tendency in me. This is part of the before, during, and after rest, which I am quite familiar with and is essential. Now, I want to engage much more in the “extra” rest and allow my body to have resources for deeper healing.
I am newly in charge of this hospital and rehabilitation center. I am definitely newly in charge in that I want to transition from the old mindset (spend energy as soon as it’s here) to the new and modern one of resting extra so the body has enough resources to actually heal.
The dream was all in Norwegian. Likely because I am in Norway now, and maybe also because Norwegian is my first language and more intimate and close to me. It’s more close to the center of who I am. It was also in Norway that the CFS initially started, in my teens, so maybe it’s fitting that I am working on how to better relate to it here.
In the CFS world, some talk about two forms of rest. Or, more accurately, two phases of rest.
TWO TYPES OF REST
REST FOR RESTITUTION
The first type of rest is for restitution. We spend energy through activity and then rest to recover that energy. In the best case, our body returns to where it was before the activity. In my experience, if I am in a CFS crash or an especially bad period, this phase can take a long time, maybe days or weeks, or even months or years. In a better period, it can take a day or so.
REST FOR HEALING
The second is healing rest. This is what happens when we rest beyond restitution and don’t spend that energy on activities. Here, the body can use the extra energy for actual healing, for improving beyond just recovering from daily activities.
TWO PHASES
As mentioned, these are two phases of rest. First, the body’s priority is restitution. When that’s accomplished, and there is no need to spend the energy on activities, the body’s priority is healing.
THREE WAYS TO APPROACH REST
There are a few general ways to work with these two types of rest.
MINIMAL RECOVERY AND ROLLERCOASTERING
The first is what many do at the beginning of living with CFS. We spend energy as soon as we have it. There is so much we want to do, so when there is metaphorical money in the bank, we spend it. This leads to a rollercoaster ride of ups and downs, crashes and recovery. In the worst case, we can crash hard which leads to a worsening of the condition that can last for months or years.
STABILIZING AND FUNCTIONING AT A SLIGHTLY IMPROVED LEVEL
The second is to take enough time for restitution rest and some healing rest to stabilize. This, in itself, is an improvement in our condition, and it can lead to functioning at a slightly better level. Since we still don’t allow for regular healing rest, there isn’t too much further improvement.
SCHEDULING ONGOING HEALING REST
The third is to schedule healing rest consistently and regularly, ideally daily. In theory, this will lead to continued improvement since the body has the energy to continue healing. It’s a form of extreme rest, and I assume it takes a certain amount of readiness and intention to do it. The readiness likely comes from living with the first two approaches for a while and seeing that they ultimately are not satisfying.
MONEY METAPHOR
A money metaphor can be useful here. Our body’s energy is like money in the bank.
We can spend it as soon as it comes into our account, and sometimes more than what comes in. We can learn to have a bit in the account and not spend more than what comes in. And we can regularly spend less than what comes in so it accumulates over time.
The first is a precarious situation. The second is OK but not as good as it could be. And the third is the wise choice over time, and what many of us find we genuinely want after experiencing the two first for a while.
REST BEFORE, DURING, AFTER & EXTRA
All of this goes back to a simple guideline for CFS: Rest before, during, after, and extra.
Resing before any activity saves up energy so we have some to spend.
Resting during an activity helps us reduce the impact.
Resting after allows for restitution.
Resting extra allows for healing.
WILL IT WORK FOR EVERYONE?
Will scheduling in healing rest bring about improvement in the condition of everyone?
I don’t know. What I know is that it likely won’t hurt. It’s giving our body its best chance of recovery, which is always worth it.
I suspect it will help everyone to some extent. It may lead to a dramatic improvement over time for some. And it may lead to a more moderate improvement, or perhaps just stabilization, for others .
It may depend on the cause of the CFS. The CFS label is likely used for a range of conditions caused by a range of different things.1
It would be very interesting to do a study on this. Of a group of people diagnosed with CFS, how many improve through some months of extreme rest, and in what ways and how much? How many stabilize? How many experience an actual improvement in their ability to function? Is there a difference depending on the particular form of CFS and what likely caused it in each case?
IN MY CASE
I am very familiar with the first approach to rest. It’s what I did when I initially got CFS in my teens, and also during one phase when it returned in my 30s.
I am also familiar with the second. It’s what I have been doing over the last several years.
The third is more unfamiliar to me, and something I notice I am fascinated by. My system seems to crave it. (I am strongly drawn to be in a quiet place in nature for a long time, resting). I want to bring it into my life, and it’s all about priorities and making space for it. (I do have some practical things to take care of, with a timeline set by circumstances and others, so it may be that I’ll go between number two and three for a while until I am in a situation where I can rest more fully and consistently. Although I know this is ultimately a matter of priorities. What’s most important to me?)
A FEW MORE WORDS
As usual, there is a lot more to say about it.
Our culture tends to value productivity highly. We gain value through being active and producing something. Many of us have our identity and self-worth wrapped around activity. That’s one reason it’s often difficult to rest beyond restitution. It feels wrong somehow. It’s good to be aware of this, question these assumptions, find our genuine value independent of our activities, and perhaps even redefine productivity.
For instance, just like a baby and any life, I have value independent of any activities or ability to produce. Also, if I have CFS, one of the most valuable and ultimately productive things I can do is to schedule regular extra and healing rest. It’s what gives my body a chance to stabilize and perhaps even recover and heal. Nothing is more important than that.
The rest during an activity can happen in two ways. One is to take breaks. The other is to do things slowly and avoid stress. I schedule in plenty to time. I do it slowly with slow movements. I take breaks. And so on. Also, if there is a rush, or I feel pressure or a push to do something, I typically choose to not do it if I can. It’s not worth it.
I find it helpful to minimize or avoid anything that masks the natural signs from my body. I want to be open to and in tune with any signs of having done too much, or being at the edge of doing too much. That’s why I generally avoid caffeine, and I also find it helpful to avoid too much sugar. (Not always successful in the latter but working on it. For me, it’s a matter of noticing the discomfort sugar leads to in my body.)
It’s also important to be aware that the more activities we rest from, the deeper the rest tends to be. Even listening to an audiobook takes energy. It may be fine, but silence can give an even deeper rest.
Over time, we can also do things to deepen our rest. Rest means rest from stress. The more we can minimize stress in our life, the deeper and more fully we can rest.
Stress is ultimately created by our stressful thoughts and it sits in our body. We can release some of this stress through cognitive therapy or inquiry. We can also release stress from our body through gentle movement (yoga, tai chi, Breema, etc.) and neurogenic tremors (Tension & Trauma Release Exercises).
A NORWEGIAN ARTICLE AND BOOK
Here is an excellent Norwegian article on the two types of rest. The website is for the book Aktivitetsapassing which goes in depth into this and more.
NOTES (1) In my case, I have the classic CFS that followed mononucleosis (Epstein-Barr virus), I assume combined with other stressors including mold and life stress.
Since I was little, I have had misophonia and sensitivity to sounds. The misophonia is mostly triggered by chewing and paper and plastic rustling, and the sound sensitivity mostly to loud sounds and noise.
GENERAL PATTERNS
I have noticed some general patterns.
My system is more sensitive when I am exhausted or stressed, and it’s much easier if I am rested and relaxed.
The misophonia and sound sensitivity is triggered more easily when the sound is ongoing. The reaction builds up over time.
And I get more stressed if I think I am unable to do something about it. If I cannot do anything about the source, if I don’t have anything to put in my ears (often tight earbuds with music), or if I cannot remove myself from the sound. (That’s why traveling with others in a car, bus, train, or plane can be stressful for me.)
If I am more resourced, the sound doesn’t last too long, and I can do something about it, it’s much easier to deal with.
THE SOURCE OF THE SOUND
And there is also a difference depending on the source of the sound.
If the source of the sound (for instance, chewing sound) is a non-human being or a baby, it’s usually completely fine with me. I may notice a small reaction far in the background, but it’s OK.
If the source is a human that’s not a baby, that’s when the misophonia is triggered.
And it’s the same with noise sensitivity. If the source is humans, it can feel overwhelming. If the source is nature, it’s typically fine.
For instance, I am currently in the countryside in the Andes mountains (El Caucho outside of Barichara). Yesterday, there was construction noise nearby which I noticed bothered me. This morning, a neighbor had the radio on loud, which bothered me. (Especially since it’s Sunday at 5:30 am), while the guacharacas loudly crowing much earlier didn’t bother me at all.
WHAT THIS SUGGESTS
This suggests that my reaction is mediated by my mental field.
If the source is “innocent” as my mind sees it, there is less reaction.
And if I have stressful thoughts about the source, the reaction is stronger. Some of the thoughts I have identified and explored are “they should know better”, “the sound is aggressive” and “this is a symptom of our destructive civilization” (loud machines, chain saws, leaf blowers), “he is inconsiderate”, and so on.
WHAT I CAN DO ABOUT IT
These patterns give me several cues for what I can do about it.
I can continue to support my system to rest and build up energy. (I have Chronic Fatigue Syndrome so this is important for me in general.) I can make sure to get good sleep. Eat well. Rest before, during, and after any activity, and extra. Take my vitamins and herbs. (Vitamin D, Siberian Ginseng, and Echinacea seem especially helpful.) Receive energization with Vortex Healing. (Amazingly helpful.)
I can continue to find ways to manage the situation when it happens. I have earbuds with me. For longer travels, I bring noise-canceling earphones. If I am about to travel with people in a car, let them know in advance. If I am in a public space and people close to me are loud, I go somewhere else. And so on.
I have found it helpful to ask myself some questions. Is this too the voice of the divine? (I notice it directly so it’s not a “trick” and I’ll still do the other things.) How I would respond if the source was a baby or non-human being? Are not humans and human civilization also nature?
I can also explore mental representations triggered by these sounds, what they mean to me (underlying assumptions, associations), how I relate to them, and what’s more true for me. I have already done this with The Work of Byron Katie and the Kiloby Inuiries, and it has helped a lot, and there is more to discover.
WHAT’S THE CAUSE?
What’s the cause of misophonia and sound sensitivity?
I am not sure. It’s likely a combination of several things:
My stressful thoughts about the sounds and what they mean.
How resourced my system is.
We evolved in a generally much more quiet environment than many of us live in today, and this likely puts a lot of stress on our system. It’s not surprising if some of us are extra sensitive to sounds and noise.
And it doesn’t matter so much. I have some ways to work with it anyway.
Image by me and Midjourney. And, no, I won’t keep going on with black-and-white woodcuts forever! It’s just what I am drawn to right now.
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.)
This is one in a series of posts with brief notes on healing, awakening, and personal things. These are more spontaneous and less comprehensive than the regular articles. Some may be made into a regular article in time.
FORGIVENESS
Why would I want to forgive? For me, the answer is that it feels better.
Does forgiveness mean not having boundaries? Not at all. Forgiveness and boundaries go hand in hand.
How can I find forgiveness?
One answer is specific approaches like understanding, heart-centered practices (tonglen, ho’o, metta), inquiry like The Work of Byron Katie, and so on.
Another answer is more general. I find it through finding forgiveness for myself. The more I can forgive myself, and live in that forgiveness, the more I can find forgiveness for others.
Is it easy? Not necessarily. Wounds can go deep, and wounds make it difficult to find genuine forgiveness. Healing opens up for forgiveness. Those two too go hand in hand.
SEPTEMBER 1, 2023
BRAIN FOG
How do I experience the brain fog?
It has several aspects.
It feels like cotton in and around my head.
It makes it difficult to remember.
It makes it difficult to take in information. (And my brain gets tired quickly.)
It makes it difficult to process information.
It makes it difficult to string words together and communicate.
In general, the more drained and exhausted my system is, the less energy there is for my executive cognitive functions. (Thinking, talking, making decisions, intentionally relating to what’s coming up, etc.)
It really seems that life wants to experience brain fog through and as me these days.
The baseline brain fog is from the onset of CFS in my teens, following a mono-infection.
When the CFS dramatically worsened 10-15 years ago, following severe and long-lasting pneumonia, it got a lot worse. My memory got a lot worse after Covid last year. (Teflon brain.)
And I suspect severe Lyme some years ago and septic shock last summer also play a role.
This is one of the many things I suspected was connected with Chronic Fatigue Syndrome (CFS), and I later realized is a common symptom.
EYESIGHT AND FATIGUE
My eyesight is strongly affected by how my system is doing in general.
If I am rested, my eyesight is good. I see relatively well both at a distance and close up.
And if my system is tired, my eyesight can be dramatically worse. I see double. I have trouble seeing clearly at a distance, and sometimes even closer up.
On a typical day, my eyesight may be good in the morning, and noticeably worse in the late afternoon and evening.
This means that if my sight is checked by an eye doctor, they may get dramatically different results depending on how I am doing when they do the tests.
EYE EXERCISES
I am also reminded of an eye-related story.
I used reading glasses in my teens and early twenties. In my mid-twenties, I started doing weekly Feldenkrais classes. And in one class, focusing on the eyes, I had a moment of strong discomfort in and around my eyes. (Some may call it an emotional or energetic release, but I don’t know.) A couple of weeks later, I sat on my glasses. When I went to the eye doctor to have my eyes checked for new glasses, she said: “Your sight is perfect, you don’t need glasses”. I asked if eyesight can improve over time, and she said: “No, that never happens”.
After this, I explored different approaches to training the eyes, including the Bates method. (I especially enjoyed “Natural Vision Improvement” by Janet Goodrich.) I did the eye exercises daily for a while, and have done them on and off for many years now.
It’s been a while since I have shared formal inquiry explorations here, including The Work of Byron Katie, so I thought I would restart that. (I used to write a lot more explorations.)
STATEMENT & SITUATION
Statement: My body shouldn’t be so tired.
Situation: Lying on the sofa five minutes before an inquiry session. (The Work on Zoom.)
INQUIRY
1. Is it true? Yes, in that situation it feels true.
2. Can you know for certain if it’s true? No, I cannot know for certain.
3. What happens when you believe that thought?
I feel extra tired. I notice the symptoms of tiredness. The tiredness comes to the forefront. It feels overwhelming. A part me of wants to cancel. I imagine others judging me. I judge myself. I see myself in the session unable to follow the question and inquiry. I see myself not being able to talk clearly and coherently. I see images of the facilitator judging me. I feel ashamed. I feel I am to blame. I tell myself I could have prevented it (through more resting, different food, taking more herbs). I blame myself for not being “more perfect” in how I take care of myself, especially the last days. I compare myself with others and how I used to be, and how I imagined I would be. I see them as energetic and active, and myself lying here unable to even do inquiry.
4. Who would you be without that thought? How would you be if you were unable to think that thought in that situation?
I notice myself as whole. I am curious about the inquiry and what will come out of it. I am looking forward to the inquiry. I notice excitement. I notice my thoughts and words come from more clarity. I feel lighter.
Turnarounds
TA1: My body should be so tired.
(a) It is. That’s how life unfolds. There are likely innumerable causes for it, and I am aware of only a tiny fraction. It’s how the whole of the universe moves locally here.
(b) It helped me do this inquiry. I had initially planned to do another one, and noticing the tiredness and this thought shifted me to do this inquiry.
(c) It has helped me do a lot of inquiry into identities, identifications, beliefs, and so on. It’s helped me examine the beliefs in my culture around this, as they are here in my own mind.
(d) It has helped me be more real with others.
(e) It has helped me understand and accept others as they are, especially if they have health challenges, and also more in general.
TA2: My thinking shouldn’t be so tired.
(a) I notice that unexamined thinking makes me feel tired, and when I examine and find what’s more true for me, I feel more clear, lighter, and engaged. I often find energy.
(b) The “should” thoughts are old and worn out. They are old and tired, in that sense.
TA3: My body shouldn’t be so energetic.
(a) I had sorted and organized earlier in the day and got into a slight adrenaline rush. I surfed on adrenaline, which is likely why I felt tired in the hour before the session. I am aware of this, and counteract it with rest and slowing down, but there is room for improvement.
(b) Also, looking at this thought makes it even more clear that the two complementary thoughts – my body shouldn’t be so tired / my body shouldn’t be so energetic – are both thoughts. They are literally imaginations.
REFLECTIONS
I did this inquiry during the session, and it was very helpful. I found a lot more than I wrote down here.
In the past, question three and the turnarounds were the most interesting to me, and I often couldn’t find so much with question four. These days, it seems that question four is the most powerful one. In this case, sitting in it felt rich and transforming.
I haven’t done The Work in a structured way for a while, and with a facilitator, so it feels good to come back to it. It feels more fresh and real, and something has shifted. (Especially really enjoying question four and what comes up there.)
Some say that caffeine gives us energy, so why don’t I drink coffee or tea?
DON’T LIKE THE EFFECTS
The simple answer is that I don’t like the effects of coffee. I enjoy the taste well enough, especially when it’s good quality and well made. But I don’t like the effects in my system, I don’t like how it feels. And it also doesn’t really give me anything I want. So it’s an easy choice. I’d rather drink something else.
STIMULANT
More to the point, caffeine is a stimulant. It makes me feel wired, and my mind can use this wiredness to ignore my body’s signals to slow down and rest. That’s not good for any of us. It can lead us to ignore these signals for too long, which can lead to burnout and crashes. I have even less wiggle room here since I have Chronic Fatigue Syndrome (CFS). If I ignore my body’s signals, I’ll crash quickly.
CAN INTERPRET WIREDNESS AS ENERGY OR ANXIETY
So what about the meme above? Why do some experience the effect of caffeine as anxiety?
I assume it’s because our mind notices the effects of the stimulant, and then interprets it as energy or anxiety. If we are not so conscious of it as a stimulant, we may call it something else.
WHAT DO I DRINK INSTEAD?
What do I drink instead? In, daily life, I typically drink herbal or spice infusions.
And if I want something that actually gives me (deep) energy, I’ll drink bone broth. (Ideally made from beef bones cooked for a couple of days in a pressure cooker or slow cooker.)
REAL ENERGY HELPS MY SYSTEM RELAX
Real energy calms down my system, and it gives me better and deeper sleep. I assume this is because my system has the energy to do what it needs, so it can relax. (If my energy is depleted, I can feel wired and have trouble sleeping.)
The quickest way for me to bring up my energy is through energizing with Vortex Healing. And this has shown me, many times, the difference between feeling depleted and wired, and the deeper relaxation that comes with real energy.
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.
Yesterday, I met with two friends from art school that I haven’t seen for many years.
From their perspective, and if they didn’t know better, they met someone who looked and seemed well and engaged. And it’s easy for them to extrapolate and assume that’s how I am all or most of the time.
The reality is quite different. I rested for days before this meeting. The meeting was brief enough so I was able to stay engaged most of the time. (In groups, I also have a strategy of allowing others to talk while I rest.) And I am spending today in bed.
This is one of the classics for people with Chronic Fatigue Syndrome (CFS/ME). We are often able to mobilize for short periods. (Especially if we can plan ahead and schedule rest before, during, and after.) And if someone only knows us through those glimpses, it’s easy for them to assume we are doing pretty well while the bigger picture is quite different.
I don’t always say anything about this to people. But if someone is a little more central to my life, I tell them what’s going on: I am able to mobilize now and then, especially if I can plan ahead and rest before, during, and after. It does cost, and it’s often worth it.
The same goes for what I write here, in its own way. I am only able to write now and then, often for a few minutes early in the day. Most posts are written in a few minutes. And I chose topics that are the easiest for me. Topics I know well from my own experience and where I don’t need to look up any background information.
I was saying to the disease: I know you are here and I have accepted your presence, but I am still going ahead with this work. To start it I have to make it as intimate as possible.
As soon as it got complex, I stopped. I wanted to stay close to the song, to sing it. So I was turning my disease into a song.
The disease taught me a lot. The greater the experience, the deeper the simplicity. Time is the most complex part of that simplicity.
– Keith Jarrett from the documentary “The Art of Improvisation”, 2005
In this quote, Keith Jarrett talks about Chronic Fatigue Syndrome, and how it helped him simplify and become more intimate with the music. He didn’t stop making music, he changed his relationship with making music.
I love what he says here. It mirrors how my relationship with spiritual practice shifted when my CFS dramatically worsened some years ago. I also had to simplify and become more intimate with it.
For instance, basic meditation is to notice and allow what’s here. Instead of intentionally noticing and allowing, I shifted into something more simple and intimate. I notice that what’s here in my field of experience is already noticed and allowed. It’s already allowed. (By space, mind, life, existence.) It’s already noticed by consciousness before any conscious noticing. I align with what is already here instead of trying to manufacture anything or achieve something through effort. It may not look like a very big shift, and yet it makes all the difference. And it is more closely aligned with reality.
I was aware of and explored this difference long before this happened, but the CFS motivated me to be more simple and intimate in this noticing, and more diligent in finding the most simple and effortless way to notice.
And that’s happened in other areas of life as well, including in my connections with others. I have had to drop a lot of pretense and facades and be simple and more intimate, especially in my more close relationships.
I have had Chronic Fatigue Syndrome (CFS, ME) since my teens, although I had a period in my twenties and thirties where I functioned better.
Through experience, I have learned a bit about how to talk about it. If I say I have CFS/ME, it won’t mean much to most people. They think it means I am a bit tired, or – in the worst case, which I have experienced during my education – they will dismiss it or even see it as an excuse for laziness. (In my studies and work, I was anything but lazy.)
So I learned to talk about it in a different way. Now, I say I have a chronic illness, and I add whatever makes sense in the situation. I may say it causes me to need to rest a lot. Or it makes it difficult for me to think and it takes time for me to think through things. Or that it makes it difficult for me to talk coherently. (When I am extra exhausted.)
That makes more sense to people. Most people have a rough understanding of what a chronic illness means, even if there are many types of them. Most take it seriously, respect it, and don’t feel they need to question it. (Or give uninformed advice.) And that makes my life much easier.
As with so much, the way we frame it – to ourselves and others – makes a big difference.
Note: I don’t often call it a disability, even if that’s what it is. In some situations, I would probably use that term as well to bring home a point.
Some years ago, my Chronic Fatigue Syndrome (CFS) shifted into a more severe phase. That meant I had to find an easier way to do many things in life.
How can I do this in a way that’s more comfortable? Require less energy? Take my situation into consideration? Is kind to me and hopefully others?
Here are some examples.
FINDING MY VALUE
I have explored and found my value independent of my actions and activities in the world. Before this happened, I put at least some of my value on my actions and what I produced. (After all, I am a child of the western culture where this is a feature.) Where is my value if all I can do is rest? If I cannot produce or do much?
One answer is that we see a baby as having value, and they mostly eat, poop, and make sounds. If a baby has value, why is that not the case with me and anyone else independent of age and production?
Another answer is in noticing my nature, and that the world to me happens within and as what I am. Here, nothing is missing. It’s complete as it is.
And yet another answer lies in examining any stressful thoughts around lack and finding what’s genuinely more true for me. (As I did for several years through The Work of Byron Katie.)
ASKING FOR HELP
I learned to ask for help.
Before this, I took pride in not asking much for help and created an identity around it.
After this happened, I had to ask for help. And it helped me soften that identification and see the value and beauty both in receiving and giving and in allowing others to give. (Especially as long as they feel free to say no.)
I am not doing this perfectly, whatever that means, but I am exploring and learning.
FINDING A YES OR NO BY NOTICING MY BODY’S RESPONSE
I have learned to find a more genuine yes and no, not only through inquiry but also by noticing my body’s response.
For instance, if I am wondering whether to do an activity or not, I can say to myself: I can choose to do this or not, and I chose to do it. And then notice my body’s response. Does it relax? Does it sigh in relief? Then I say to myself: I can choose to do this or not, and I choose not to. And again notice my body’s response.
The genuine yes is reflected in my body relaxing, in a sigh of relief. Sometimes it’s a yes to the activity, and sometimes it’s a no to the activity.
(How does this work? It may be because the more unfiltered and honest part of my mind is intimately connected with my physical body. Or more accurately, because any tension in my mind is reflected in tension in my physical body, and tension always happens when we are not completely honest with ourselves.)
FINDING ESSENTIAL NEEDS AND MOTIVATIONS
What are some of my surface wishes and motivations? Taking one of them, what do I hope to get out of it? And what do I hope to get out of that? And that? What’s the most essential wish and motivation behind it? How can I give that to myself? In life? How is it to give it to that part of me here and now, within myself? (From Adyashanti.)
This is another way to simplify my life. On the surface, I have innumerable wishes and motivations. And when I trace them back to their essence, I find just a few and perhaps really just one.
This helps me prioritize and find and give myself what I really wish for and need.
It also helps me differentiate my genuine needs and motivations, and the strategies I use to find and give it to myself. It helps me explore a variety of ways to give it to myself. (NVC.)
For instance, I may have a surface wish for money. When I trace it back, I find it’s more essentially a wish for safety. Can I offer a sense of safety to the part(s) of me that wish for safety? Can I find ways to feel safer in life? (I can also explore ways to be a good steward of my life in terms of finances. What are some ways to have more stable finances? What are some ways to have a little more money in my life?)
I may have a surface wish for ice cream. When I trace it back, I find it’s more essentially a wish for love, comfort, and enjoyment, and even more essentially love. Can I give love to those parts of me wishing for love? Can I give comfort to the parts wishing for comfort? Can I give enjoyment to my inner community? Can I find ways to give this to myself in life? (And I can, of course, still eat ice cream if I wish.)
SIMPLIFYING MY LIFE
I have always loved simple living, and leading simple living groups was part of my actual job for a while. CFS has encouraged me to simplify even more.
What can I prune in my life? What can I say no to? (Which is a yes to me.) What drains energy? What do I really enjoy? What gives me a boost? What’s worth spending energy on, even if it has a cost?
What has life pruned for me? And can I join in with it? Can I find where it’s a genuine gift?
FINDING PEACE WITH SAYING NO
Like many in my culture, I have been programmed to think I should say “no” as little as possible. A part of me wants to please others to avoid discomfort. I should answer calls. I should say “yes” if I am invited somewhere.
So I have had to explore this and find more peace with saying no, and sometimes really enjoy saying no.
As Byron Katie says, a genuine “no” is a yes to me. Right there, I find more peace with it and even joy.
I see the benefits of learning to say no. It helps me take care of myself and my health. It helps me prune away activities (and sometimes people) that don’t feel right to have in my life. It leaves room for what’s more enjoyable, nourishing, and meaningful. I find that the space itself is enjoyable, nourishing, and meaningful (!).
Feeling free to say a genuine yes or no is easier through good communication and some education. I am working on being better at explaining my situation to people in my life. The more they understand, the easier it is for all of us to have our needs met. We can more easily find strategies that work.
FINDING AND GIVING TO MYSELF WHAT’S NOURISHING
What’s deeply nourishing for me?
In my case, I find it’s a wide range of things and activities.
Bone broth (!) is deeply nourishing for my body and thus for all of me. Whole food low on the food chain is typically the same. (I find refined foods draining.) Warm herbal tea, and sometimes spice tea, is often nourishing, along with dark miso broth.
Nature and being in nature is deeply nourishing for me. (It can be just sitting in a garden, enjoying the sun, clouds, wind, chirping birds, the sound of the wind in the trees, and so on.)
Some relationships are deeply nourishing, especially at certain times.
This type of exploration is nourishing to me, when I have the energy.
Some input – podcasts, interviews, articles, videos, movies, and music – is nourishing for me, at the right time.
Breema is deeply nourishing for me, whether it’s receiving, giving (when I have enough energy), or doing Self-Breema.
Receiving Vortex Healing for energizing is deeply nourishing for my system. It especially helps if I feel very drained or in a crash.
MORE EASE IN THE EXPLORATIONS: BASIC MEDITATION AND MORE
I used to put extra effort into my meditation practice, whether it was training a more stable attention, noticing my nature, or something else. In my teens and twenties, I would often meditate or hours at a time. I would go fully into the Tibetan Ngöndro practice. I would practice as if my hair was on fire, as they say in Buddhism. I found I couldn’t do that anymore. I had to find an easier and simpler way.
What was this easier way? I have mostly focused on basic meditation, noticing and allowing what’s here, and noticing that any content of experience is already noticed and allowed. By noticing what’s already here, I scale back the effort to the essentials.
I found that the essence of the Headless experiments is also helpful since that too is about noticing what’s already here.
Also, I kept some simple heart-centered practices like tonglen and ho’oponopono.
And I have, in periods, done simple forms of inquiry like the Big Mind process, and The Work of Byron Katie, the Kiloby/Living inquiries.
INQUIRY AND HEART-CENTERED PRACTICES
Inquiry and heart-centered practices help me find more ease.
Stressful stories are only partially true and my system is spending a lot of energy maintaining them and reacting to them. Identifying and examining these stories, and finding what’s more genuinely true for me, opens up space for more ease and presence. I find The Work of Byron Katie and the Kiloby/Living inquiries most helpful for this.
Heart-centered practices shift how I relate to anything – discomfort, myself, others, situations, life, and more. (And really, my images of all of these.) They help me shift from seeing them as enemies, struggling with them, and so on, to genuinely befriending them and perhaps even finding genuine gratitude for them. This too opens up space and opens up for more ease and peace with what is. The practices I am most familiar with are tonglen, ho’oponopono, and the Jesus/Heart prayer.
FINDING WHAT I AM
Finding what I am helps me find an essential simplicity.
In the world, I am this human self in the world. That’s not wrong.
Is that also what I am in my own first-person experience? I find I more fundamentally am capacity for the word as it appears to me, for any and all content of experience. I am what the world, to me, happens within and as.
And here, there is an essential simplicity. It’s the simplicity that allows and takes the form of all the richness of experience. It’s what’s free of tension and stress, and is free to take the form of what a thought may label tension and stress.
THE NATURE OF MY EXPERIENCES IS THE SAME AS MY OWN NATURE
This is perhaps a bit obscure and marginal for most but important to me.
When I experience discomfort, the habitual response in my system is to react to it. To try to push it away. Distract myself from it, often by going into compulsions. Make it go away, sometimes by healing and transforming it away. And so on.
My system responds as if it’s “other”. As if it’s a kind of enemy or problem. As if is a foreign element.
In reality, I am capacity for it. It happens within and as what I am.
Noticing this, and resting in that noticing, helps to shift out of this pattern. And that too gives more of a sense of ease and peace. It initially takes a bit of effort, and it really frees up a lot of energy tied up in the struggle from the old habitual response.
How do I do that? The easiest for me is to remind myself of my headlessness, notice my nature directly, and then notice and rest in the noticing of the nature of (what my thoughts label) the discomfort.
INVITED TO BE MORE SINCERE AND THOROUGH
Very little of this was new to me. These were all things I have explored since my teens or twenties. But the more severe phase of the CFS invited me to be more sincere and thorough in the exploration of all of it. Life created a kind of boundary for me and I needed to go deeper within that boundary. I could get away with less. I couldn’t so easily get away with being approximate and sloppy. I needed to be more sincere and precise.
It almost goes without saying, but a part of this sincerity is to find what’s genuinely true for me. Tricking myself doesn’t work since a part of me (all parts, really) know what’s going on. It has to be genuine to have any value.
OFTEN MESSY
By writing it like this, it can look as if I have it all sorted.
The reality is far more messy and human. I am not by any means perfect in any of this, whatever we imagine “perfect” means. I am winging it. I am learning a few things as I go along, often slowly. I forget and then remember again. I have a lot of issues and traumas that sometimes obscure and confuse any clarity that’s here. I don’t have any final or full answers. And as with most of these posts, I am writing this as a reminder to myself. As an invitation to myself to bring it alive here and now and explore it further.
It’s all very much a work in progress. And an adventure.
Note: What I have written here applies to some extent to many forms of chronic illness. This includes different forms of long-covid, some of which are similar to CFS. Long-covid is a post-viral disease and CFS is often a post-viral disease.
I have Chronic Fatigue (CFS) so I have become quite familiar with how my system functions when it has less energy.
Here are a few things I notice:
LESS ENERGY FOR ACTIVITIES
Predictably, I have less energy to do things. I need to rest more. I need to rest before, during, and after most activities.
I also find that some activities many see as restful take more energy than many seem to suspect. This includes conversations, sitting, watching movies, and listening to words or music. For me, it’s very noticeable how much energy these activities require, and I often cannot do it for very long.
This also happens with physiological stress, for instance when the weather is very hot or cold. I notice how this too takes a lot of energy, and there is less left for anything else.
LESS ENERGY TO REGULATE MIND AND BODY
In general, it seems that my system needs energy to regulate itself well. When my energy level goes down, my system struggles with regulating mind and body. Said another way, it prioritizes survival and energy saving. It goes into low-power mode.
My thoughts don’t work as well. I have trouble thinking, planning, remembering, and making (good) decisions. The executive functions suffer, probably because they – for my system – become less of a priority in these situations. Water, food, and rest are primary. Thinking is less important.
My mind tends to project the current state to the future. When I look at images of the future, I see myself with similar low energy. And joining in and fueling it fuels anxiety, worry, and concern.
I get more irritable. I get more sensitive to sounds and noise. If I need to eat, drink, or rest, I tend to get impatient with anything that’s in the way.
My cravings get stronger, especially for sugar. This is not so surprising since sugar gives a quick energy fix, and in an emergency, sugar does help a bit. (It’s obviously not a long-term solution.)
My vision gets blurry and I start seeing double. It dramatically worsens compared to when my energy level is better.
My body seems to have trouble regulating body temperature. I am often unusually hot, especially at night, and sometimes freezing cold – in a way that’s out of proportion with the ambient temperature.
It’s ironically more difficult to get good quality rest and sleep. The more exhausted my system is, the worse my rest and sleep tend to be. It’s difficult to fall asleep and stay asleep, and the sleep I get is not refreshing.
WHAT HELPS
So what’s the remedy?
The short-term remedy is water, food, rest, and staying well within my energy budget.
Doing what feels genuinely right for me helps my system not use too much energy. While going against my guidance drains my energy. Following an honest “yes” or “no” is essential for not crashing. (I sometimes do a quick check. I say to myself “I can do X, and I chose to do it” and notice how my body responds. I then say “I can do X, and I chose not to” and notice how my body responds. One will typically give a sense of relief and peace, and the other tension. And whether that’s the yes or no depends on the situation.)
Asking for help. I ask for help with practical things from family, friends, or paid help. (I trust people to say no if it doesn’t work for them.) And when necessary, I ask for Vortex Healing energizing since that is often quick and effective.
I help myself get out of fueling stressful stories. I recognize unhelpful mental patterns and decide to set it aside. I focus on the physical sensations. I examine the stories and see where they come from. (Learned from family and society, fueled by a sense of lack in myself.) And sometimes, I just find an enjoyable distraction for a while to help me shift out of old patterns.
Some herbal remedies nurture and support the deeper energy levels in my body, especially some adaptogens. Bone broth seems to fill up deep energy reserves in my body. Eating low on the food chain and fresh and seasonal food helps my system in general, as does avoiding or minimizing certain foods. (For me, anything processed, dairy, wheat, and sugar. Although I do eat some of this sometimes, and sometimes it even gives me a boost.)
Breema nourishes, balances, and energizes. I find a sense of wholeness and my relationship to life shifts. This happens whether I do Self-Breema, or receive or give Breema bodywork.
Vortex Healing also balances and energizes, although in a different way. Vortex Healing energization tends to help a lot, although it needs to happen frequently since it seems that my system is unable to hold energy for very long. I find it’s also important to bring up the constitutional energy of my energy channels and organs, especially the kidneys.
And it’s always helpful to examine anything in my psychology that’s an energy drain. I especially pay attention to what issues seem to give me a feeling of weakness, hopelessness, or energy drain when triggered and explore those. In general, the more I can genuinely befriend what’s here, the easier it is. That tends to happen when I examine and get to know the parts of me struggling with what’s here. And also when I examine any stressful stories my system holds as true and find what’s genuinely more true for me.
