Keith Jarrett on CFS & music creation

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.

How I have learned to talk about an invisible and less-understood chronic illness

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.

Finding an easier way: chronic illness as a guide

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.

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What happens when I have less energy?

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.

Brief notes on healing and awakening and occasional personal things – vol. 30

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.

GRUMPINESS EARLY IN A CFS/ME CRASH

I have Chronic Fatigue Syndrome (CFS/ME), and one of the early signals of being in a crash is that I get a bit grumpy.

Usually, I crash if I am in some level of activity, and haven’t had water, food, or rest/sleep recently enough.

This seems common among people with CFS/ME and there is probably a biological/physiological component.

At the same time, I assume there is a psychological component as well. When I explore this for myself, I find anger there.

Some of the anger is probably directed towards the crashing itself and is rooted in fear. It’s unloved and unexamined fear taking the form of anger.

It may also be that crashing makes it difficult to manage the unloved and unexamined anger (always rooted in fear) in my system, so it comes up in those situations.

I have explored the contraction the grumpiness is/comes from, and it took a while but my relationship to it shifted. I see it more as an object now and can relate to it more intentionally.

There is more exploring to do, and we’ll see how this plays out in daily life in the future.

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Epstein-Barr vaccine for ME/CFS?

We’ve been sort of chipping away at this [long COVID] by treating each symptom,” he says. “If it’s really true that at least 40% of people have significant recovery with a therapeutic vaccination, then, to date, this is the most effective intervention we have for long COVID.

Mysterious Ailment, Mysterious Relief: Vaccines Help Some COVID Long-Haulers, NPR

Quite a few who have Chronic Fatigue Syndrome (CFS) got it after an Epstein-Barr infection (mononucleosis), just like some got long-Covid following a Covid 19 infection.

Both are classic post-viral syndromes, so I wonder if an Epstein-Barr vaccine would help some of those CFS patients? Although most promising leads in medicine go nowhere, it would be worth testing.

Unfortunately, there is no approved vaccine for Epstein-Barr yet, but it may come. I assume it’s not a priority to develop this type of vaccine.

If this turns out to work for EB-related CFS, why would it? The trigger of CFS may be a low-grade chronic EB infection. So an EB vaccine may kick the immune system into better detecting and going after EB virus previously “invisible” to the immune system.

The cause of Chronic Fatigue Syndrome: combined viral and other stress?

I just had an online appointment with a doctor who specializes in functional medicine and has worked with many patients with Chronic Fatigue Syndrome (CFS).

His overall explanation of CFS is very similar to what I have arrived at as a likely explanation, based on my own experience.

It’s a mainly physical illness, triggered or caused by stress. And this stress is often a combination of physical and psychological stress and can come from a variety of sources. Since a viral infection often precedes CFS, I assume this plays a central role as well. Perhaps the body’s reaction to the stress of the viral infection, combined with other stress, triggers the illness.

When I initially got CFS at age fifteen, I suspect the sources of stress were several. I likely had a low-grade chronic Epstein-Barr infection (I had mononucleosis a few months earlier), combined with usual teenage stress (towards the high end of the scale), combined with my first and last party where I drank alcohol. The three together may have been enough to trigger the CFS.

When the CFS worsened a couple of decades later, the sources of stress were serious and long-lasting pneumonia, a marriage that didn’t feel right, perhaps combined with mold in the house.

And when it worsened further some years later, it was immediately following a two-week period where my presence was required daily at a study, and that involved a long travel time.

In general, my condition worsens when the following stressors are present: Physical exertion, psychological exertion, life stress, cold and/or wet weather, and poor diet. I imagine other stressors like pollution, food quality, and so on also play a role.

What’s the remedy? The doctor suggested a combination of healthy oils, adaptogens, probiotics, and vitamins and minerals. This is not so different from what others in the field recommend.

The doctor suggested a pathway as well, involving cortisol, adrenals, etc. Any ideas we currently have about these pathways are, by necessity, simplistic and I mainly leave those explorations to others. I am more interested in the possible causes, what maintains or worsens the illness, and the possible remedies.

A note on mechanisms: There are no agreed-upon mechanisms from CFS. There are some typical patterns in what goes before the illness and what worsens and stabilizes it. There are some findings, usually from single unreplicated studies. There are several suggested mechanisms and biological elements of the illness. And that’s about it, and that’s one reason I hold it all very lightly. Even if or when they get a better idea of the mechanism, it’s important to remember that modern science – including medical science – is in its infancy. They only have small pieces of a much larger and more complex puzzle. And the content of science, by its nature, changes over time. What’s held as (provisional) truth today will be outdated and obsolete in a year, or a decade, or a century. All of it is provisional. It’s the best guess based on what we know today. And it’s all a small piece of a much larger puzzle.

How my meditation practice changed when the CFS got stronger

I had a long meditation practice before the Chronic Fatigue Syndrome got significantly worse some years ago. I found I couldn’t continue my practice as before, and struggled with it for a while, until I started to find my way.

So how does it look now?

I do a very simple basic meditation of noticing and allowing. Notice what’s here. Allow it as it is. Notice it’s already allowed as it is. Adyashanti has some very good guided meditations on this, and Natural Rest is another way into it that works well. It’s also the basic meditation found in Buddhism.

I find heart-centered practices very helpful, including tonglen and ho’oponopno. This helps shift how I relate to myself, others, situations, parts of myself, and existence in general.

Pointers for noticing what I am are helpful, especially Headless experiments and (a simple version of) the Big Mind process.

Sometimes, I also do some inquiry, especially simple pointers like the ones from Adyashanti. How would I treat myself right now if I was someone I deeply care about? How would truth and love view this situation? And so on.

Beyond this, I sometimes do more in-depth inquiry, for instance through The Work of Byron Katie and Living Inquiries. And I do some somatic work, especially Tension and Trauma Release Exercises (TRE) and Breema.

In general, I have found a more relaxed way of doing these practices. And it’s more about noticing what’s already here than creating anything or going somewhere.

Chronic fatigue (CFS) and imposter syndrome

In a social media group for people with chronic fatigue syndrome (CFS), someone mentioned that she sometimes feels like an imposter since she has days where she feels more normal and can do more.

As with so much of the odd and not-so-odd things related to CFS, this is something I recognzie for myself.

One of the typical things with CFS is that we have good and bad days and even weeks and months where we either have more energy or feel worse than usual.

Because of this typical feature of CFS, I also sometimes feel like an imposter. At the very least, I notice a concern that others will think I am just making it up. After all, on some days, I can go out and do things almost like I could before I got sick.

Why is that? After all, I have all the main and core symptoms of CFS, including the typical viral-infection starting point, and also an official diagnosis. And the swings is a common feature of CFS. It’s to be expected.

The main reason is probably that we still don’t have a good medical understanding of CFS. Although we know a lot about it, and know it’s a physical illness, the specific mechanisms are still a mystery.

As soon as we have a better understanding of the mechanisms, a lot will shift.

We may be on our way to good medical treatment.

Doctors, governments, and people in general will take it far more seriously and recognize it as an illness on line with any other physical illness.

And a lot of the extra stress and worry that people with CFS live with because it is, to some extent, a mystery illness, will drop away.

Recovering from Covid 19: post-viral fatigue pointers from someone with CFS

As with viral infections in general, Covid 19 infections can lead to long lasting or even chronic fatigue. In a conversation with a friend of mine who is in this situation, I realized that things that for me – having lived with post-viral fatigue for a while now – are second nature, are not for those more new to living with fatigue. So I thought I would share some of what has helped me, and perhaps it can help someone recovering from C19.

The general situation

Living with Chronic Fatigue Syndroms (CFS) is unpredictable, and it seems that’s the same for many recovering from C19. Our energy levels change over time and cannot easily be predicted. One day, I may be able to do a few things, other days I need to rest the whole time. I may have some energy in the morning and need to rest the rest of the day, or more in the evening and less earlier in the day. And I sometimes have more physical energy and less mental energy, or the reverse.

I am unable to live as I did, and it can be baffling, puzzling, and scary to see that both body and mind function differently from before. Even something as simple as watching a movie from beginning to end or doing mindfulness practice may be difficult if not impossible.

We react to this in different ways and it changes over time. We may experience fear for the future. Grief over the loss. Frustration over not being able to do the same as before. Anger that this happened to us. Sadness. Vulnerability. People around us may but understand and we may go through a range of reactions for that reason.

Over time, we learn to adapt to the new situation. We find practical strategies that makes our daily life easier and more enjoyable. We may even find genuine meaning in our new life.

Pratical pointers

Here are some practical pointers I have found helpful for myself. They are not in any particular order. You may want to pick just one that resonates with you and apply it to your day. And then perhaps another on another day. Over time, these may become new habits and feel easy and natural.

Most importantly, follow the advice of your doctor and specialists. If you feel your doctor is not taking your condition seriously enough, find someone else. Seek out the best medical support you can for your rehabilitation.

The essence

You may not be able to do what you did before, whether it’s physical or mental activities. And that’s OK. Your body needs rest to stabilize and recover.

Your main job is to rest. Anything else is just a bonus.

Do half of what you feel you can do. Save energy so you don’t crash and your body can heal.

Social life

It’s completely OK to say “no” to invitations. Tell them you would love to go, but are unable to because of your health. Perhaps connect in written form or on the phone or virtually instead.

In a conversation, it’s completely OK to say “I notice I am getting tired and need to rest”. When you notice you have limited energy at the start of a conversation, you can let them know and that the conversation may need to be short.

If you schedule something with someone, consider letting them know in advance that you may have to cancel and why. Canceling is completely OK. Your main priority is rest and your health.

Sometimes it’s worth spending energy on something even if you may need to rest extra later. Avoid crashes since it takes longer for your system to recover from this.

Communication

Educate those around you about your situation. Share sources with them. Or, if you are unable to, ask them to find good information and educate themselves.

Communicate. Ask for what you need. People are not mind-readers. Most people have limited personal experience with this type of fatigue. They may not know or understand what you need unless you let them know.

Tasks

Make a “hidden” to-do list with everything you need or want to do. Out of this, pick one or two and put them on your to-do list for the next day. If you do these and find you have energy to do more, you can always go back to the longer list and pick something. If you can’t do the one or two things, that’s OK too. Your main job is to rest and support your body in recovering.

See if you can find an easier way to do what you need to do. Maybe you can do tasks more slowly and with time for rest. Break a project into smaller parts and do one at a time with rest in between.

Ask for help with practical activities. If you can, pay someone to do housework or practical projects. Ask friends and family. Tell them your situation and let them know how much it would mean to you. (And also that “no” is a perfectly good answer.)

Activity window

In periods where we have more energy, it can be tempting to speed up to do as much as possible. See how it is to slow down instead and give yourself time for rest.

See if you can stay within the activity “window” where you are not doing so much that you feel worse after, and where you don’t do so little that you become more inactive than you need.

Rest

Your main job is to rest and allow your body to recover.

Rest before, during, and after activities. And rest extra to give your body a better opportunity to recover.

Find what’s quality rest for you. Set aside time for this.

Learning to receive help & changing identities

It can be challenging to learn to receive help, especially if we are used to be more self-reliant. An honest conversation around this can help. You can tell those around you that this is difficult for you and hear how it is for them.

Also, trust that people say an honest “yes” when they are helping you. And remember that helping you can give others an opportunity to feel useful and it can give them a sense of meaning.

Learning to live with fatigue and other health challenges involves a change in identities and roles. We are often identified with the roles we have, especially when these roles are seen as desirable by society, so it can be challenging to lose these identities and roles. Remember that who you are doesn’t change and you are 100% valuable independent of your roles and identities.

Social support

Find others in your situation. Find support groups on social media and elsewhere. Connect with people who understand.

Change your doctor if you are not satisfied with him or her, and if you don’t feel understood and supported.

Follow the body

Learn the signals from your body. What are the early signals of having done too much? What are the early signals of crashing. Take these serious and rest when you notice them. These signals vary but for CFS can include nausea, headache, and a “wired” feeling in the body.

Learn to be flexible and adapt to what your body asks of you. You may have planned something and it’s completely fine to cancel, postpone, or just do one part if you notice you need rest.

If you have a yes/no decision to make, for instance about an invitation, you can do a quick test. Say to yourself “I can do [the activity] if I want to, and I want to” and notice how your body responds. Does it tense? Does it relax? Then say to yourself “I can do [the activity] if I want, and I don’t want to” and notice how your body responds. Tension is a “no” and relaxation and a sense of relief is a “yes”.

Self-worth & emotions

You are 100% valuable even if you can’t do all you want to do. (Any ideas of worth tied up with our activities come from culture and are especially not useful when we find ourselves in a situation where we are required to rest and reduce our activity level.)

Whatever you feel is completely OK. It’s not wrong.

Support your body

Do simple things to support your body.

Gentle movements. Nature. Drink plenty of water. Eat mostly unprocessed foods and fresh fruits and vegetables. Eat regularly.

Be mindful of, reduce, or avoid stimulants. These can give “false energy” and make you feel you can do more than you actually can.

Get massage, acupuncture or whatever else helps your system.

Adjust recreational activities

Any activity takes energy, even just talking or watching a movie. It’s OK to take a rest from even apparently simple activities.

Allow yourself to read, watch, or listen to something simple and enjoyable. You may not have the energy for something long or very meaningful or deep, and that’s completely OK.

Find easier way of doing what you like to do. For instance, instead of reading you can listen to audio books. Instead of going for long walks, you can go for shorter walks or just sit outside.

Identify energy thieves

Identify what drains your energy and find ways to eliminate or reduce it in your life. For instance, it’s completely fine to avoid news if it increases your stress level. Your main job is to rest and recover.

Energy thieves are found both in our daily life situations and in our thinking. It’s helpful to prioritize and chose away what’s not essential if it’s draining. If we need to do something, find ways to spend less energy doing it. And if we have stressful thoughts, it’s good to identify and question them.

Mental stress

If you struggle with your situation, it can be helpful to talk to a therapist.

It can also be helpful to learn simple and practical tools from cognitive therapy.

It’s not helpful to compare yourself to others or how you were before. Your standards are now different. Your priority is to rest and recover.

Enjoyment & Nature

Find simple things that give you enjoyment in daily life.

Nature is healing. If you can, sit outside. Enjoy the wind and the sun. Even a few minutes can be refreshing and rejuvenating.

And remember…

Your main job is to rest. Anything else is just a bonus.

Your life is not over. It’s just different. And it can still be meaningful.

Finding meaning

When we are unable to do as much as before, we can experience a loss of meaning. We may have invested meaning in activities in our previous life, so when these are gone so is that particular meaning. The good news is that we can find meaning somewhere else.

The invitation is to find meaning in our life as it is, however it is.

It can be just in watching the sky out the window and listening to the birds. Or having a cup of coffee or tea. Talking with friends and family. Engaging in a simple spiritual practice. Or perhaps offering some of our gifts to others in whatever way we are able to. It doesn’t have to be big. It’s possible to find meaning even in the small and ordinary things.

The upside

There are some upsides to the limits life puts on us, even if they can be difficult to notice at first.

What these are is unique to us.

We may have more time for something enjoyable or meaningful – perhaps time with family, friends, reading, or something else.

We may find our value independent of our activities. Discover the value and beauty in slowing down. Find genuine enjoyment in the simple things in life.

We may find that we don’t need to live up to the images we previously tried to live up to, and this is a huge relief. We may be more genuine and vulnerable with those around us and connect at a deeper level.

Spiritual practices

This won’t apply for everyone but I’ll mention it as an example of how we can adapt to a life with less energy and/or brain fog.

Spiritual practice has been important for me most of my adult life. And this period of fatigue has been a kind of retreat. I haven’t been able to continue doing some of my previous practices the way I did them, but I have found other practices and different ways of doing some of my previous practices. Mainly, I have learned to do spiritual practices in a more relaxed way and with more ease, and to weave them more seamlessly into daily life.

In that way, this period of fatigue has been a blessing.

Contact

If you have questions or comments about any of this, feel free to leave a comment or contact me.

Pandemic and chronic fatigue

An infection with the new-to-humans C19 (corona, covid 19) virus may lead to chronic fatigue. Although Chronic Fatigue Syndrome (CFS) often comes after mononucleosis (Epstein-Barr virus), it can follow other infections which is why it’s sometimes is called a post-viral syndrome.

So in two or three years, we may see a significant increase in people with CFS. And although I don’t wish it for anyone, I also realize that this can come with some upsides. It can increase awareness of CFS in general. It can help increase acceptance of CFS as a serious biological illness. And it can spur more research into CFS and its causes and possible treatments and cures.

The pandemic has already had some upsides for people with CFS and other disabilities or chronic illnesses. It has opened up the world through increased use of virtual meetings, socializing, and public offerings (talks, concerts, performances). I personally am very grateful for that shift and feel more included.

Vortex Healing experience: Connecting with underlying fear

In these days of pandemic isolation, I am aware of the part of me that struggles with being unable to do as much as I would like. This part of me has been a frequent companion since the chronic fatigue returned more strongly a few years back.

Yesterday morning, I noticed a shift in how I experience this struggle. In the past, I have experienced it as frustration. Now, I experience it as fear. I can connect with the fear behind the struggle, and that feels like a relief and – in a sense – a coming home. It’s more true that it’s fear, and connecting with the fear allows something in me to relax.

I also noticed that I already know the truth of the situation. For instance, that the frustration comes from “shoulds” in me and do not reflect reality. I can more easily align with this truth and don’t have to go into the frustration.

I enjoyed this shift and explored and stayed with it for a while. It didn’t seem to be connected with any particular or recent healing work so I assumed it came from a maturation that had happened mostly below the surface over time. (Which is certainly part of it.)

When I mentioned this to my partner in the evening, she said “I did the choice points for that issue for you yesterday, while you were asleep, but I forgot to mention it. Sorry!”. We had talked about doing the choice points for it the previous day although I assumed she hadn’t done it yet since she hadn’t mention it.

Her not mentioning it was perfect. It allowed me to see the effect of removing the choice points without being influenced by knowing it had been done. In this case, removing the choice points allowed me to connect with the deeper feelings and beliefs under the earlier surface expression, and it also allowed me to more easily align with the truth of the situation.

Choice points – as described in Vortex Healing – are energetic structures created when the divine decides to have a certain experience for itself. In this case, frustration over not being able to do as much as I would like. At higher levels of Vortex Healing, these can be unraveled in relatively short time.

I add a few words about what I have noticed about this frustration: It comes when the underlying fear is not noticed. It comes from beliefs and identities telling me I am not good enough as I am and that my value comes from my activities. There is a fear of not being good enough or valuable enough in the eyes of others, existence, and the divine.

And it’s innocent. It’s something I adopted from others early in life.

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Chronic fatigue reflections II

This is the second in a series of posts with Chronic fatigue Syndrome (CFS) reflections. These are my own observations so take it with a big grain of salt and – if you have CFS and are curious – explore it for yourself and see what you find.

CFS, rest, and energization. A big part of living with Chronic Fatigue syndrome (CFS) is needing rest, and often a lot of rest (before, during, and after activities). With Vortex Healing in my life, that’s now a little different. When I need rest, what I really need is Vortex Healing energization. The need for rest comes from lack of energy, and this can be remedied – partially or largely – with VH energization.

The way it most often looks is that I notice the need for rest. Lie down and rest, and also receive VH energization. The energization fills up my energy system, and the rest allows my system to absorb it and recover. The result is that I feel much better and the rest period typically is shortened.

Sometimes, it’s difficult for me to channel for myself (since that takes energy), and that’s when it’s a blessing to have a partner who is a senior-level Vortex healer.

CFS, crashing, fear, and grumpiness. I have mentioned this in another post and it’s something I keep exploring. If I am out and about, even for a short period, I need to eat (small amounts) and drink frequently. If I don’t, my system starts crashing.

When that happens, one of the early symptoms is grumpiness. Sometimes, it takes a few minutes before I notice what’s happening and that I need some food and drink. The grumpiness may then take the form of a mostly single-minded focus on getting just that.

Although grumpiness is fine, it’s not always so enjoyable for me or my partner (when we are out together). So I have set the intention to be more aware of this pattern, recognize it earlier, and explore the grumpiness itself.

What I have found is that it’s actually fear. Survival fear.

When I notice that fear, I can tell myself (and my partner) that I notice fear. I notice fear. Survival fear. That means my system is about to crash and I need something to eat and drink as soon as possible, and also a bit of rest.

Noticing what’s behind the grumpiness, putting it into words, and saying out loud helps take some of the charge out of it.

I am still early in the process of exploring this but I suspect it means it doesn’t have to go into grumpiness in the same way.

If this dynamic follows a pattern I have explored before, then it can take two forms. One is that my system needs food and water urgently, there is survival fear, I don’t notice or recognize this fear, and it takes the form of grumpiness or even anger.

The other is that the fear is noticed and acknowledged, and it doesn’t have to take the form of grumpiness or anger because it is already acknowledged and listened to and I take steps to remedy the situation it’s telling me about. (Through food, drink, and rest.)

In the first case, the signal is amplified because I didn’t notice it early on. In the second case, I notice the early signal so it doesn’t have to amplify.

Warrior and CFS

This is something I am in the middle of exploring so my insights around it are not so clear right now. (Of course, it’s a pitfall to assume that our understanding about anything in life is ever very clear!)

There is definitely a biological component to CFS (Epstein-Barr infection prior to onset of CFS etc.) but that may not be the whole picture.

I have long suspected there is a connection between suppressed warrior archetype / energy and chronic fatigue syndrome (CFS), at least in my case. Part of this suppressed warrior archetype is suppressed anger. And it has been suppressed because of adopted family and cultural norms and patterns, and more specifically through people-pleasing and sacrificing my own needs and passions in order to please others.

When I am intentionally in contact with my inner warrior and anger, I feel stronger, more solid, more authentic, more real, more grounded, and I have more energy. I seem to be able to do more without crashing.

I should say that the energy behind anger is, in itself, a more neutral energy. It can be expressed in many ways, including as determination, focus, and authenticity. It doesn’t have to be expressed in what most people think of as anger, although that can be appropriate as well. And if it’s expressed as anger, then the more we are free from beliefs and emotional hangups around anger, the more we can express it in a healthy and constructive way.

I should also mention that several people (senior Vortex Healers and teachers) have said that I seem to have had several lives as a warrior and that the trauma from these lives is still with me. It seems that this has especially surfaced the last few years in order to find healing. I don’t know, but I can easily see myself as having had several warrior lives in the past. And some of the trauma I have explored in myself definitely fits war trauma. Whether it’s literally true or not, the image definitely highlights something in me that needs attention.

In German New Medicine, they see feeling off track as connected with CFS. That also fits my experience. When I first got CFS, I was fifteen and felt lost and off track in life. The CFS symptoms subsided in my 20s and 30s, perhaps because I felt on track and had a strong sense of purpose in life. After several years in a marriage where I felt I couldn’t be myself I similarly felt off track and the CFS returned, and this time stronger.

Why did I feel off track? A major reason was people-pleasing and that I set aside – and didn’t embody or make use of – the warrior archetype in my life. If I had, I would have made very different choices and I would – very likely – have felt much more solid, authentic, and on track in life.

Of course, I don’t know if this had anything to do with the onset of CFS, or the maintenance of it, or what role it will play in healing from it. But I will certainly continue to explore it and do my best to bring the warrior back into my life.

What does the warrior archetype mean to me? It means being more real, authentic, honest, determined, passionate, and being a good steward of my life and – as best I can – the world. It means to stand up for myself as needed, and for others and the world. It means to use the energy behind anger and channel into all of this – authenticity, realness, honesty, determination, passion, and anything else.

How do I work with it? I can easily access the energy of the warrior and just being in contact with it – and use it for daily life activities – helps a lot. I am also actively working on any issues holding me back from living more from the warrior, and this mostly means fears and beliefs that it’s dangerous. (Which it is but that’s OK, that’s part of the game.)

In terms of approaches, work with it using inquiry, dialog, and Vortex Healing (especially choice points has been helpful) and so on.

Why do I say “the energy behind the anger”? Because what’s experienced and expressed as anger is something else before it takes that particular form. It comes from a more neutral and primal energy. And this energy can be channeled in different directions. It can be suppressed. It can be expressed as healthy or unhealthy anger. It can be expressed as clarity, determination, authenticity, honesty, groundedness, fearlessness (not allowing fear to stop me), and action.

Why do I chose to work on it? Because it can’t hurt. At least, it can give me a better quality of life. And it may even free up resources in my body so it can more easily heal itself.

If there is a connection between the warrior archetype of CFS, what may it be? It may be that suppressing the warrior (through people pleasing etc.) somehow sets up the system to be more susceptible for CFS. For many, a mononucleosis infection (Epstein-Barr) lasts a few days, is over, and has no long-term consequence. For some, it precedes CFS. The difference may be a combination of genetics, personality / emotional issues, ongoing and acute stress, and perhaps more. And in the personality / emotional issues category, we may find suppressing the warrior and anger. Who knows. At the very least, it’s worth exploring and see what happens when I free the warrior. (As I did in my late teens and twenties when my health was much better even though I still had CFS.)

Updates a few days later…..

Family background. I thought I would add a few words about how this pattern was created in my life. My father is a warrior by nature and has used that energy in his work and life outside of the family. But in the family, he suppresses his anger, emotions, and warrior. His motto is: Don’t speak up about anything. Don’t rock the boat. And especially when it comes to my mother. I was distressed by this dynamic even as a very little child and spoke up about it, but was told – as I was in many other situations – to be quiet and pretend nothing is going on. I adopted this pattern, by necessity, and unfortunately learned to not speak up, not stand up for myself, and instead be a people-pleaser. (Enneagram nine.)

The regrets I have in my life come from times when I didn’t speak up and didn’t stand up for myself when I needed to and it was appropriate. In other words, I learned to hide my inner warrior. I learned to hide my warrior nature. And – as mentioned above – this may be connected with the CFS. At the very least, going out of this pattern and standing up for myself more regularly will help me a lot in my life and improve my quality of life. And, who knows, maybe it even will help bring me back to a more robust health.

Spiritual dark nights and warrior. When I went to Nepal and India in my twenties, I wished for some kind of spiritual transformation. Instead, what I got was learning to stand up for myself. And that is a spiritual transformation. It’s part of embodiment.

When I occasionally mention the dark night I have been going through for a few years, most people think the transformation has to do with learning about or discovering interconnectedness, compassion, empathy, living for the larger whole, and so on. But for me, it’s the reverse. I did all of that in my teens, twenties and thirties. What I didn’t learn was to stand up for myself consistently and when it was needed in life. (Of course, I need to deepen in the oneness side too, but for now, what seems more important is to learn to take care of my human life with more consistency.)

The dark night obviously has had to do with healing old traumas and emotional issues, and seeing and questioning remaining identities and beliefs. But a big part of it is exactly this: learning to stand up for myself. Learning to be a good steward of my own life. Learning to take care of the individual side of the individual vs. collective/oneness side of the equation.

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Chronic Fatigue reflections I: movement, surfacing emotions, crashing, food, and anger

I decided to start a series of posts with Chronic fatigue Syndrome (CFS) reflections. These are just my own observations so take it with a big grain of salt and explore it for yourself (if you have CFS).

Chronic fatigue and conscious movement. One thing I have learned through living with Chronic Fatigue (CFS) is to be extra conscious of how I physically move. If I move too fast – and frantically – it’s clearly not good for my health. I need to find a comfortable way to move, and that usually means to slow down. Beyond that, if I can find a nurturing way to move, that’s even better.

When I see others moving in a fast or frantic way, it’s a reminder to me to slow down. I am usually pretty good at it, but I too notice the temptation to speed up and try to do a lot quickly. It’s also helped me to look at why I am tempted to do this. Mainly, when I have some “extra” energy – beyond just being able to lie in bed do close to nothing – there is a temptation to do as much as I can – and perhaps to do this relatively fast – since I don’t know how long it will last.

I have done a lot of conscious movement work in my previous life so this is relatively natural for me (tai chi, chigong, yoga, Feldenkrais, Breema). For others with CFS but without this previous experience, I imagine that very gentle conscious-movement explorations can be helpful if it’s adapted to what they are able to do without worsening too dramatically or crashing.

Chronic fatigue and surfacing emotions. We are a seamless system so emotions play a role in any aspect of our life, and so also in chronic illness. For instance, chronic illness may lead to – at different times – anger, frustration, sadness, grief, anxiety, and so on, and it’s good to address this to improve quality of life and give the system a better chance to heal itself. It’s also possible that certain personality traits – like perfectionism and people-pleasing – is connected with CFS although research has not shown this (yet).

In general, why not address emotional issues? It can certainly improve our quality of life no matter our situation, and it can also free up resources allowing our system to better heal itself.

There are many possible connections between CFS and emotions. Here, I want to highlight just one. When my energy level is good, my old emotional issues are mostly “hidden” and not very obvious. I have the resources to deal with life without having too many issues triggered.

When my energy levels go down, these old issues tend to surface more easily. Even smaller challenges in life can trigger my old hangups since I don’t have the resources to deal with life’s challenges as I normally would.

The gift in this is that I get to see these old hangups, make a note of them, and perhaps – if I have energy! – address them.

Chronic fatigue & crashing. When my system crashes, it’s typically when I am out of bed and in some activity, and when I do too much and haven’t had food and water frequently enough. The recipe for avoiding crashing is the reverse: do less, rest more, and eat small meals and drink (water, herbal teas) more frequently.

When my system crashes, it feels like a whole-systems crash. My physical body begins to shut down. My mind goes into survival mode with a single-minded focus on food and water. And if I perceive that someone or something is in the way of me getting food and water quickly, I may also get frustrated, angry, and/or grumpy. (The focus is often on chocolate and sodas since that gives me quick energy, even if I rarely if ever eat and drink it otherwise.)

Chronic fatigue & food. I know I do better when I avoid some foods (wheat, dairy, sugar, refined foods) and eat more of other foods (vegetables, some fruits, some less typical grains). In periods where I eat more indiscriminately, my system is eventually impacted and I need to switch back to a more intentional diet. Similarly, if I eat strictly for too long, I eventually need to broaden my diet.

The foods I get sick from if I eat them regularly become medicine in small amounts in periods where I eat more intentionally (for instance, cheese, cream, chocolate).

As mentioned above, if I am out of the house and notice I am about to crash, it can help to eat foods I usually completely avoid (AKA “junk” food) – simply because this food is full of quick energy.

Chronic fatigue & anger. I suspect that, for me, there is a connection between suppressed anger and fatigue. It may be one of several keys to healing. (It was obviously not the only or main factor in causing the illness, if it played a role at all.)

In my case, there is probably a connection between perfectionism and people-pleasing and suppressed anger (when we ignore our own needs in order to please others, we naturally get angry). And there are also beliefs and “shoulds” about anger from my family (where showing anger is not acceptable).

Anger is energy, and when it’s suppressed it means that the energy of the anger – in the moment – is not available. I also suspect that suppressed anger corresponds to chronic tension in the body (see other articles on how chronic tension is necessary for us us to hold a stance and believe anything at all), and that tension requires and “binds” energy that could have been used for the normal functioning of the body and for healing.

I notice that when I connect with the energy of anger, and perhaps use it when I speak and act (in a constructive way), I feel stronger and I feel I have more energy. And I don’t crash the way I normally do following exertion (PEM).

I thought this would be the end of this article but I’ll add a few more observations / questions….

Yawning as a signal. Over time, I have learned to notice signals that helps me avoid crashing. Yawning is one of those signals.

In my experience, when I yawn it means one of three things.

Most often, it means I need food – and that I need it right away. It’s already been a little too long since last meal or mini-meal.

If I have recently had food, it may mean that my system needs energization. Vortex Healing is the best way for me to do this.

And if I have had food and my system is relatively well energized, it may mean that I am ready for sleep.

Vortex healing experience: after a healing session

Each Vortex Healing (VH) session is different – depending on the VH tools we use, the focus and intention for the session, the recipient and what’s going on for them, and probably much more.

I thought I would share my experience yesterday with receiving a VH session. It’s not necessarily typical (this doesn’t happen following each session) and it’s also not atypical (nothing was really that surprising).

I received a VH session using Bioelectric Flow (a VH tool) with the intention to work on what will most effectively allow me to heal from the chronic fatigue (CFS). I felt the energy – the Bioelectric Flow has a distinct quality – working in my head, and especially in the center of my head and where the brain meets the spine. (This was also the experience of the healer.) It felt strong, as the previous two Bioelectric Flow sessions have been.

Following the session, I noticed the energy continuing working on my brain. I went to bed early (8pm), slept for a couple of hours, and woke up with a lot of anger in my system. This is, most likely, suppressed anger that the healing session allowed to come to the surface and be seen and felt. I had the intention to notice and allow the anger energy and also notice and allow the old suppressing pattern without engaging in it.

For the next one or two hours, I stayed in bed and noticed and allowed whatever was coming up, and also had periods of strong shaking, trembling, leg and arm movements (running and hitting), and vocalizations. All of this helped ground and release the energy coming up in my system.

In the beginning, I felt everything – myself, the world – as waves and energy. Then, I experience myself as an energy being without boundaries. And then, as boiling liquid without any boundaries. After a while, and especially after shaking and trembling a few times, the sense of my physical body returned more and the “boundary-less energy” feeling relaxed a bit.

After I sensed that this process was mostly over, I got up and had something to eat and drink, went back to bed, slept for about nine hours, and woke up feeling good.

This process was made easier – and especially being with and allowing what surfaced was made easier – by sharing bed with my partner, physical touch, and she understanding and supporting the process. We even got some good laughs from the intensity of the shaking and movements that sometimes happened for me.

From the beginning of the return of the CFS (about ten years ago), I have sensed that it had to do with my brain and nervous system and that my brain and nervous system needed healing. I have also sensed that the CFS has to do with feeling off track, people pleasing, me leaving my inner guidance on a major life decision some time earlier, and suppressed anger from the people-pleasing and leaving my own guidance. During the session, the energy worked on my brain and the brain/spine connection, and after suppressed anger surfaced, so it happened to fit two of the main things I sense needs to change for a real and deeper healing to take place.

I should mention that I am able to give myself VH sessions (I am at MG level), but it’s sometimes easier to receive from someone else, and – in this case – the specific VH tool I wanted to use is in a future class for me so I needed to receive it from someone else.

The difference between causes of illness and what helps it turn around

Words are important. And the words a therapist, doctor, or healer use with their clients or patients are especially important.

It seems obvious but most of us are sometimes sloppy, don’t think about how our words may be perceived, and we may even be – knowingly or unknowingly – intellectually dishonest.

This came up for me when I asked a top level energy healer about my chronic fatigue syndrome (CFS) and specifically a crash following over-exertion (PEM).

His reply was “the tiredness has emotional causes”.

I am very open to work on any emotional issues that may maintain the CFS and prevent healing. After all, the body is a seamless whole, CFS is a complex and chronic condition without a single known cause or remedy, and working on any part of my system and environment can support my body in healing. Emotional issues are already on top of my list of things to address, along with strengthening my energy system, diet, and aiming to live in a warmer and dryer climate.

And yet, his reply seems a bit careless.

First, CFS isn’t just or even primarily about “tiredness”. The symptoms are typically a combination of fatigue, brain fog, digestive problems, sleep problems, post-exertion worsening (PEM), temperature dysregulation, and much more. To reduce it to “tiredness” makes it sound like it’s just a worse or more lasting form of regular tiredness which is far from reality.

Second, CFS has several known non-emotional factors. For instance, it often follows an infection like mononucleosis (as in my case). The Epstein-Barr virus seems to play a role. The tendency to crash following exertion (PEM) is a core symptom and isn’t related to emotions in any obvious way. Diet is an important factor in stabilizing the condition and perhaps the healing. Nutrients the same. And climate often plays a big role for people with CFS. (I get worse in cold and wet climates and sometimes remarkably much better in warm and dry climates.)

Emotional issues definitely plays a role in well-being and in reducing stress (which can support the body in stabilizing and perhaps even healing itself). It may even be one of several factors in the onset and maintenance of the illness – although we don’t know enough about that yet.

But to say that “the tiredness has emotional causes” reveals a lack of understanding of CFS and a lack of humility when faces with a complex and relatively poorly understood illness.

Also, there is a difference between factors that cause, maintain, and support healing from an illness. Sometimes, these are different from each other. And especially when it comes to chronic, complex, and poorly understood conditions, some or all of the healing factors may be different from the initial causes and even the maintaining factors.

It may be the healer had a sense or intuition that it can help me to address some emotional issues and that’s my sense too. If he had that sense and still expressed it as “the tiredness has emotional causes”, then it seems he made a big, unnecessary, and potentially misleading assumption.

If I took what he said seriously and literally, as some would, it would close the door to other approaches. Including approaches that may be equally or more important in supporting my system in its healing process.

For several reasons, it would have been much better for him to say “it may help your system to work on emotional issues – try it and see what happens”. It would be closer to his reality. It would be more intellectually honest. It wouldn’t conflate causes, maintaining factors, and healing factors. And it would support the client – in this case me – to follow his pointer while also staying more open to other possibilities.

In summary: I see there is a grain of truth in what he said and working on emotional issues is already on top of my priorities. (I have been working on it for a while.) And yet, I see his response as careless, potentially misleading, and even intellectually dishonest.

In the worst case, it can close the door on addressing other factors that can support the healing as much or more.

Setting all of this aside, which emotional issues are on my to-do list? I am especially interested in working on any possible issues that may have stressed my system at the onset of the illness when I was fifteen, any fears of staying sick, and even any fears of being healthy and fully involved in the world again.

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Healing work: differentiating factors that initiate, maintain, and support healing from the illness

When we work on healing, it can be helpful to differentiate factors that initiate the illness, maintains it, and supports healing from the illness.

These three groups of factors sometimes overlap and sometimes are different from each other. For instance, if we identify healing factors, it doesn’t mean those are the same as the ones initiating or maintaining the illness (although they may be).

Simple vs complex illnesses

When the illness is simple, acute, and relatively well understood, the three types of factors may be more or less the same. I get an infection. It’s maintained by the bacteria. And the healing comes from eliminating the bacteria – either through allowing the body to take care of it or using antibiotics.

When the illness is more complex, chronic, or less well-understood, differentiating the three may be helpful. The maintaining factors may be different from the initiating factors, and we may need to address both. Also, we’ll often need to take a holistic approach and focus on supporting our body in its healing process in any way possible, independent of the specific initiating and maintaining factors.

Not jumping to conclusions

I sometimes see people working in alternative healing modalities confuse these. For instance, with a complex and chronic condition, it can be helpful to work on any emotional issues that create stress and this is one component in supporting the body in healing itself. That, of course, doesn’t mean that any one emotional issue created the illness or was even a (major) component in the onset of the illness. It may be, but it also may not be. We often don’t know, and for healing purposes, we may not need to know.

Similarly, if we know what caused a chronic illness, it doesn’t mean that addressing other things isn’t helpful for the healing. Often, we need to take a holistic approach in supporting the system in healing itself.

My own experience

I am perhaps especially aware of the importance of differentiate these three types of factors because of the chronic fatigue (CFS) I have had at varying levels since my teens.

In my case, the initiating factors may be a combination of genetics, mononucleosis (Epstein-Barr virus), teenage stress (social anxiety), and possibly mold (I lived in a basement apartment). When the CFS returned strongly some years ago, it was likely triggered by another infection (pneumonia) combined with mold and possibly stress.

I am not sure what the maintaining factors are although stress, an overactive flight/fight/freeze (FFF) system, diet, and climate are likely to each play a role.

When it comes to the factors supporting healing, some address possible maintaining factors and some support the body in healing itself.

In the first category, a priority is to remove any Epstein-Barr virus still in the system, reducing stress and supporting the FFF system in normalizing, changing the diet to (mostly) avoid processed foods and foods I have an intolerance to, and – as much as possible – spend time in a sunny, dry, and warm climate.

In the second category, I have found the following helpful: herbal medicine (mostly large doses adaptogens), get plenty of rest and sleep, learn to listen to and take seriously the signals from the body, supporting and strengthening my energy system, and working on any emotional issues creating stress and possibly preventing healing. One of the things I haven’t wholeheartedly focused on yet is detoxing.

Chronic Fatigue and three forms of rest

Since I am exploring chronic fatigue syndrome (CFS) more these days, I thought I would write a few posts on it. This and other topics are mentioned in my article on the CFS retreat.

With CFS, there are three forms of rest: after, before, and extra.

Resting after an activity is the after rest. This usually takes care of itself. I do something. Feel tired or exhausted. And need to rest. Often, I don’t have a choice.

Resting before a planned activity is the before rest. I rest for hours, days, weeks, or months before a planned activity so I’ll be able to do it. I rest a lot anyway so this is on top of the baseline rest.

Resting on top of these two types of rest is the extra rest. This is the rest that allows the body to heal and restore itself. It’s the rest I do when I could do something else but know that this extra rest is vital for restoring my body and allowing it to heal.

As I mentioned, the after rest usually takes care of itself. I don’t have much choice but to rest after activity. The before rest is something I have learned and it feels relatively ingrained now.

It’s the extra or healing rest I want to pay more attention to. This is the one I want to program myself to do more of. I notice I have energy to do something, and I still chose to rest. I chose to not spend the little energy I have right away. I chose to invest it in allowing my body to build up resources to heal.

A while back, my herbalist told me to spend only half of the energy I feel I can spend. That’s very good advice and something I am still learning.

Chronic fatigue retreat in Norway

After being officially diagnosed with chronic fatigue (CFS) in Norway, I was offered to participate in a four-week course for CFS. I think of it more as a CFS retreat, and I thought I would share a few impressions from it here.

THE SETTING

The retreat is held at a rehabilitation center in southern Norway specializing in, among other things, chronic fatigue. The location is by a lake in a peaceful and beautiful valley. Everything was paid by the government, including transportation to and from the center. (I like that we collectively in Norway contribute to these things and decide it’s important.)

We have our own rooms (spacious, clean, quiet), four healthy and delicious meals a day, and there are several common areas. For those with food intolerances – which is most of us with CFS – they prepare special meals. They also have a quiet room for those who needed peaceful meals.

The CFS staff is professional, personable, kind, and with a very good understanding of CFS and its challenges, and what typically helps people with CFS.

The schedule is gentle. Four meals a day. A class (workshop) three times a week following breakfast. Mindfulness. Mindful movement. Some gentle activities in nature.

We can have the food delivered to our room if we feel it’s too much to do it ourselves. And we can ask to have someone change our sheets and towels.

I had special meals (without wheat or dairy). And I prioritized the classes and sometimes rested instead of participating in the mindfulness.

There will be a follow-up two-week retreat sometime next year.

OVERALL IMPRESSION

When I looked into the different locations for CFS-courses in Norway, this one stood out. Past participants gave it almost exclusively positive reviews. And I have to say I am very impressed by the staff, the place, and what I have gotten out of it. I am very grateful for having been given the opportunity to be here.

AVOIDING WORSENING

I know some people experience a worsening after participating in a CFS course, although I suspect it happens less often here than other places. The staff call potential participants in advance to screen them and make sure (as well as they can) that they have a high enough capacity to participate and get something out of it without worsening. (Or, at least, not more than we can recover from relatively quickly.)

During the course, the staff strongly encourage us to pay attention to early symptoms of doing too much and stay within what we are able to do without risking crashing. We are encouraged to create a schedule for ourselves we are comfortable with. (I am on a reduced schedule.)

And whenever we say no to an event because we need to rest, we receive strong positive reinforcement for doing so. After all, learning just that is one of the reasons we are here. And by resting instead of overdoing it, we set a good example for the other participants.

WHAT I GOT OUT OF IT

For me, what I appreciated the most was to be understood – by the staff and my fellow CFS participants. So I felt normal. I didn’t have to explain. I didn’t have to worry I wouldn’t be understood. I didn’t have to worry about what they would think when I had to choose to rest instead of participating in an event or social activities.

Most of the content was familiar to me, but it was very helpful to go through it, have conversations about it, and have the importance of it reinforced.

In the long term, I hope to learn to stabilize better and avoid frequent crashes, especially since this is essential for giving my body enough rest so it can gradually heal itself.

MAIN EMPHASIS

The main emphasis is to learn and use strategies that improve our quality of life and give our body the best opportunity to gradually heal itself.

Stay within a level of activity so we avoid crashes. (Taking the elevator down to the basement.) Sometimes, we may choose to do a little more, but in general stay within a range that gives stability. This gives the body an opportunity to gradually heal instead of frequently having to use resources to recover from crashes.

Notice the early signs of needing to rest and take these seriously. If we had diabetes, we would take insulin as soon as we needed to. It’s the same for CFS. As soon as we notice we need our medicine, which is rest, then take it. Prioritize it.

Reduce stress, including in the following ways:

(a) We learned to recognize stressful thoughts and what they do to our emotions, symptoms, and behavior. And replace these with more realistic thoughts that are more kind, calms down our system, and lead to behavior that helps us rest and take care of ourselves.

(b) We found and prioritized our personal values (what’s important to us), and learned how following “shoulds” create stress while following our values calms the system.

(c) We learned basic mindfulness and noticing and allowing thoughts, emotions, and sensations, and that we are not any of those. And that fighting discomfort and reality create stress while noticing, allowing, and befriending discomfort and the reality of our situation calms our system.

(d) We explored that we are all 100% valuable independent of what we can or cannot do, and what we think and feel about how valuable we are. We all agree that babies are 100% valuable even if they can’t do much and create work for others, so when do we lose that value? It’s only in our thoughts and feelings we reduce our value, while in reality, we keep our 100% value.

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How I am currently working on the chronic fatigue

I thought I would write a few notes on how I am currently working on my chronic fatigue (CFS).

I mostly use the following approaches: Vortex Healing which is a very powerful form of energy work. Living Inquiries which is a modern form of traditional Buddhist inquiry. Natural Rest. (Basic Meditation). And sometimes ho’oponopno, parts work (Big Mind process), and other approaches described on this website.

Infections

Now and then, I check for the Epstein Barr virus to see if it’s back. If it is, I channel to remove it. (Happened last winter/spring.) I also check for Lyme. If it’s active, I channel so it goes back to a dormant state. I use Vortex Healing for this, and sometimes have another Vortex Healer do it for me since that’s easier.

Energy system

I use Vortex Healing to work on clearing, energizing, and optimizing my energy system.

Almost daily, I spend some time optimizing all body energies, the energy system in general, and my system as a whole. I also check the different parts of the energy system, organs, and parts of the body (like cells, mitochondria) and work on the parts and connections that need extra attention.

This summer, I focused on the deeper and more fundamental parts of the energy system: pre-natal jing, kidney essence, the constitutional energies of the energy pathways (meridians, voridians, kundalini) and the organs (primarily kidneys and lungs), and the energy production of the cells.

I plan to work more on the kidneys, nervous system, and digestive system.

My energy system feels much better than it used to and seems to be in an overall good state. For some reason, this hasn’t translated into more energy in my daily life. That’s why my next step is focusing on the fight/flight/freeze (FFF) response and any emotional issues that may contribute to an overactive FFF and the CFS (fatigue, brain fog).

Flight/Fight/Freeze

I plan to work more directly on the flight/fight/freeze (FFF) response using Vortex Healing. The FFF response is often chronically engaged and overactive for people with CFS, and is for me too. I’ll work on the FFF response in general. Some of the different systems that are part of the FFF (nervous system, endocrine, etc.). And any traumas and emotional issues contributing to an overactive FFF response.

Emotional issues

I have mainly worked on my energy system the last few months, and it’s now time to work more systematically on any emotional issues that may impact the FFF and CFS.

Using Vortex Healing, I intend for the energy to work on the emotional issue most impacting my energy system (or fatigue, brain fog). The energy goes there even if I don’t consciously know what it is, and I usually get a sense of what it is after a while.

Some specific issues I’ll work on with Vortex Healing and Living Inquiries: Wanting to hide from life (and childhood experiences related to that fear). Feeling off track (as I did both at the onset of CFS and when it returned many years later). Fears of the illness. Fear of being healthy. Fear of allowing and befriending what’s here – my situation, my discomfort – more fully.

On my list is also to explore my willingness to heal, and any fears connected with it. To work more systematically on any issues that may have triggered the initial onset when I was fifteen. (Fear of adult life, etc.) And look at any resistance to the illness so I can find more genuine peace with it as it is.

Outlook

Although last year has been difficult for me healthwise, I am generally quite optimistic. I know I can have a good quality of life even with CFS, and I know that with proper rest and continuing healing the different aspects that may contribute to the CFS, there is a good chance I’ll gradually get better.

Own inquiry: Tired

Since the idea of “tired” and “I am tired” is a common part of CFS, I thought I would explore them.

Look at the word “tired”. See it up in front of you. Look at the letters, shapes, texture. Look at the space around it.

Do you feel anything in the body when you look at the word? Yes, a knot in my stomach, a sensation through my upper body and in my face.

Feel the sensations. Allow them to be there.

Do you see any images? Yes, an image of my body and something dark especially over the upper body and more dark and dense in my belly.

Look at that image. Put it up in front of you, as if it’s on a wall. Look at the shapes, colors, texture.

Is that image tiredness? No, but it’s connected to pressure in my chest, a (smaller) knot in my belly, and sensations through the upper body and face.

Feel those sensations. What happens? I notice they get stronger when I say the word “tired” to myself. I notice sadness.

Feel the sadness. Take time with it. Allow it. Where do you feel it? My upper body feels hollow and the sadness seems to be in the middle of the hollow upper body.

Can you find the sensations creating the sadness? Yes, in my throat, chest and heart area, and a small contraction in the belly.

Feel the sensations. Allow. Rest with it. What do you notice? The sensations are getting stronger. Stronger sense of sadness. It feels good to feel it and allow it. I notice the space it’s all happening within. It feels spacious.

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Chronic fatigue & the flight/fight/freeze response

The fight/flight/freeze response seems connected with Chronic Fatigue Syndrome (CFS). It may be chronically activated and connected with many of the typical symptoms of CFS.

Although this is well-known in the CFS world, we don’t many specifics or the why or how or what to do about it.

When the flight/fight/freeze (FFF) response is activated…..

The eyes dilate. Light sensitivity is typical for CFS.

The heart works harder. Faster, stronger, and sometimes irregular heartbeat is relatively common for CFS.

Digestion is inhibited. Many with CFS have digestive problems.

Sexual function is reduced. Again, common in CFS.

There is heightened sensitivity to any stimuli. Hypersensitivity to sound, movement (around us), and chemicals is typical for CFS.

Higher cognitive functions are reduced. The body’s resources are used for more immediate concerns. Reduced higher cognitive function (executive functions) is a core symptom of CFS.

Sleep has low priority and the FFF response counteracts sleep. Sleep problems of all sorts are common with CFS. (Difficulty falling asleep, staying asleep, and don’t feel refreshed after sleep.)

Sweat secretion is activated. Increased sweating and cold sweat is common with CFS. As is temperature dysregulation.

There is less blood to the skin and kidneys. People with CFS often have white spots in the hands and fingers. I wonder if that’s connected to reduced blood flow? (Also, in Vortex Healing, weak and infected kidneys is one of the first things they work on.)

And finally, if the FFF response is chronically activated, you’d expect to see fatigue. And that’s another core symptom of CFS.

More in general, while the flight and fight response seems chronically active and may account for many of the symptoms, the condition also looks a lot like freeze (need for rest, isolation, etc.).

How can we make use of knowing about the FFF / CFS connection?

For me, it helps me feel less weird. I see that many of my symptoms make sense in the light of a chronically activated FFF response.

And anything that reduces the FFF response is helpful, like mindfulness, gentle yoga, and (skilled, gradual) work on stressful thoughts and underlying trauma.

This also explains why therapeutic tremoring has helped many with CFS. By releasing chronic tension and trauma out of the system, the chronic FFF response relaxes a bit and this helps the system recover and function more normally.

When it comes to the modality I currently find most helpful (Vortex Healing), I plan to focus more on my FFF response.

Why do we see a FFF / CFS connection? I am not sure. CFS often follows an infection like mononucleosis. I wonder if the body’s response to the infection somehow leads to a chronically active FFF response?

Note: I intentionally used the more broad FFF term as I didn’t want to focus too much on any single component of it. FFF involves more than any single system in our bodies and far more than what we currently are aware of. For instance, there is this recent article about the role of the bones in FFF: Bone, not adrenaline, drives fight or flight response.

Update December 2019: I just found an article on possible damage to the brain stem in people with CFS/ME. This is very interesting and can explain why the flight/fight/freeze response is chronically active for many with CFS. A virus and/or inflammation may have damaged the brain stem, which in turn causes the FFF response to be chronically “on”.

Update April 2020: Something felt off in the way I looked at flight/fight/freeze and CFS and I felt I was missing something. What I was missing was a fourth way of responding: fold. It seems that CFS is more connected with the fold response. It’s one way of folding.

Chronic Fatigue Syndrome: Misconceptions based on the name

I have Chronic Fatigue Syndrome (CFS) and although I am mostly interested in how to heal from it (and live with it), I am also interested in CFS in general.

And that includes the label and how people may perceive CFS based on the label.

It’s easy to understand why CFS became the popular name for the condition. It’s simple, catchy, and relatively easy to remember. And it was created before the condition was well understood. (Not that it is well understood  even now.)

And yet, the name itself can lead to misunderstandings.

Is it chronic? Yes, in the sense that it’s often long lasting. But people do heal from CFS, even after many years of illness, and with a diagnosis and symptoms that match all the criteria. Often, it requires working with specialists in the field and using a holistic and comprehensive approach.

Is it mainly fatigue? Yes, fatigue is a major component. But it’s far from just a longer lasting form of regular fatigue. It typically includes a lot of additional debilitating symptoms such as worsening after any (physical or cognitive) exertion, brain fog (a sense of “cotton in the head” along with impaired  cognitive function and executive functions), aches and pain, digestive problems (leaky gut), hypersensitivity (to light, sounds, chemicals), and more. There is a long list of sometimes obscure, inexplicable, and weird symptoms shared by most or many of the people who are diagnosed with CFS.

The condition is not created by what causes regular fatigue. Often, it comes after an infection, typically Epstein-Barr.

And what can bring recovery is different from a regular fatigue. Rest is important but not sufficient. Often, a comprehensive approach is needed focusing on nutrition, learning to navigate life with the illness, and in general supporting our system in recovering in any way possible. For me, this support comes from a combination of rest, nutrition, working on emotional issues, mindfulness, energy work and so on.

Is it a syndrome? Yes, it is a syndrome since there is that long list of symptoms. I suspect it’s called a syndrome mostly because the condition is not well understood. Most illnesses have many symptoms without being called a syndrome, so when we understand  it better and know more about what causes it, we may well give it a name that doesn’t include the word “syndrome”.

So what about the name chronic fatigue syndrome? The name can give the impression that it’s a longer lasting case of regular fatigue, and perhaps that its causes and remedies are similar to those of regular fatigue. But that is far from reality. The symptoms are more and different, the causes are different (although not fully understood), and what helps recovery is different.

A couple of days ago, I saw a discussion thread in a Facebook group for a more general healing modality (Vortex Healing). Some people responded with suggestions that seemed to assume that CFS is a variation of the regular fatigue most people experience now and then. And that was the seed of this article.

Acceptance and commitment

From the Optimum Health Clinic

This video is a reminder of the importance of acceptance and commitment if we want to change. He talks about chronic fatigue (CFS), and it also applies to change in general.

How does acceptance look to me? And specifically in the context of CFS?

I am more honest with myself about my situation. I let it sink in. I live according to my situation. (I make plans, regulate my activity etc. according to the limits and possibilities of living with a serious illness.) I also take care of (care for) the emotions and fears coming up in me when I am more honest with myself about my situation.

And how does commitment look?

I am committed to finding improvement. To explore best practices. Work with someone who has a good track record in helping people with CFS and uses a grounded and integral approach. Implement their recommendations. Stay with it. Make adjustments as I learn more and see what works for me.

I find it interesting to look at the comments to this video. Some comments (almost all as of writing this) seem a bit reactive and express something like “are you telling me I am not committed? I have been fighting this illness for years!”.

We may wish to heal, we may be distressed about it (sad, angry, hopeful, disappointed), we may try a lot in order to heal, but that’s different than acceptance and commitment. For instance, the word “fighting” in itself implies a lack of acceptance and an orientation that can get in the way of a deeper commitment.

To me, acceptance and commitment are quiet, deep, and gives a direction over the long term. And it’s an ongoing process, at least for me.

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You don’t have to fix everything

This video from The Optimum Health Clinic is about chronic fatigue (CFS) and it’s something I very much relate to.

Since we don’t know exactly what causes CFS and we often need to take a comprehensive and integral approach to manage it and perhaps heal from it, it’s easy to think that we have to fix everything to recover.

I am just like the client in the video. I know it’s probably not true, but I still often feel and act as if it’s true. I keep working on emotional issues, nutrition, diet, herbal medicine, regulating my activity levels, mindfulness, prayer, heart-centered practices, energy healing, being honest with myself and following my guidance, and much more, in order to see if I can recover from the CFS. At one level, it’s a wise, comprehensive, and integral approach. At another, for me, it sometimes has an element of compulsiveness.

It can be the same with healing from trauma since it’s often a set of emotional issues tied together, and we can always find additional related and underlying issues to address. We may have the idea that we need to fix everything before we are OK and can relax and enjoy life again.

And it can be that way with awakening as well, in whatever way we understand awakening. We keep going at it, perhaps from many different angles, and don’t feel we are OK or can relax until we “arrive” at some imagined place or state.

We may know – and perceive in immediacy – that all is the divine and perfect as is. We are also aware that there is room for improvement in terms of befriending our experience, clarity, healing, maturing, and living from our experience of all as the divine (Big Mind). And we may be genuinely drawn to keeping exploring all of this and deepening in it.

And for some of us on a spiritual path, it can feel a bit compulsive and we have the idea that we have to fix everything about ourselves before we are OK and can relax.

It’s very natural and understandable if we have some compulsion in our healing or awakening work. It’s even helpful. It creates an extra needed momentum and especially early on in the process.

And yet, at some point, it’s helpful to address the compulsion itself. Where does it come from? Is the voice in me driving the compulsion true?

Often, the compulsion is a reaction to believing that we are not OK and not enough as we are. We try to improve ourselves in order to get somewhere or get something we believe we don’t have. We may also have a belief that we need the compulsion in order to get anywhere and fear that we’ll stagnate without it.

None of that is really true, and as the compulsion relaxes, we may discover a few different things. We may find that it’s OK to take time to relax and enjoy our life as it is, and we may find we are more able to relax and enjoy it. We may also find that we are still moved to explore and invite in healing and awakening, and that there is a deeper calling or curiosity that’s not dependent on compulsion, a sense of lack, or (unquestioned, unbefriended) fear.

So the compulsion itself is not good or bad. It can be helpful in certain phases of our process. And it is driven by something in us that’s out of alignment with reality, so at some point, life invites us to notice and address it.

By doing that, we may find a deeper sense of contentment and OKness as we are. And that from here, we are more free to enjoy life and even to keep exploring and inviting in continued healing, maturing, and awakening. We lose the compulsion and we gain deeper contentment.

I should add that if our exploration was largely driven by compulsion and a sense of lack, we may let the exploration go after we resolve this sense of lack. We may be very happy to just enjoy and live our life without this element of exploration. And that’s more than OK too.

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The gifts of chronic fatigue

This is another topic I like to revisit: 

What are the gifts of chronic fatigue (CFS)? What are the genuine gifts in it for me? 

It supports healing, awakening, and humanizing. Just like life in general, when we are receptive to it. 

It invites a deep healing of the bodymind. In my case, it invites me to notice any stressful beliefs and find what’s more true for me (The Work). It invites me to find healing for anything that comes up and is triggered by the illness and life situation. It invites me to find healing for any emotional issues that may weaken my system (they all do) and contribute to the illness. It invites me to strengthen, clear, and balance my body and energy system in a variety of ways – through food, herbal medicine, bodywork, energy work, nature, and more. 

It invites awakening. It invites awakening to (and out of) beliefs and identifications, and especially those triggered by my situation. It invites noticing what’s happening in me – including the emotional pain – as happening within and as what I am. (Not noticing that is extra painful so there is an inherent incentive to notice what it is happening within and as, and find what I am as that.) 

It invites humanizing, becoming more deeply human. Having a serious illness, and having a lot of unprocessed emotional material surfacing, and also making decisions “out of character” because of it, is very humbling. It can be deeply humanizing. This is all universally human. What I experience has been and is experienced by innumerable others. 

In addition…. 

It invites learning about health and healing, and what works for me in my situation. I have learned about CFS and Lyme and Lyme co-infections. I have learned about what foods and herbal medicines work best for me (I had a pretty good sense of that from before). I have learned about a range of modalities for healing the body and mind. 

It invites deep rest. Not only in a conventional sense, but a deeper rest through healing, awakening, and humanizing. (Emotional wounds, taking ourselves to only be separate, and trying to be better than or different from others is inherently stressful. When we heal, awaken, and humanize, we find relief and a deeper rest.) 

It has given me time to rest, notice, and explore, including to explore these topics. 

It has given me experiences, insights, and skills I can share with others and that may be useful for some others. I have been given a lot from others (everything including my life), and passing on just a little bit that’s helpful for others makes me very grateful. 

And last but not least, my situation has motivated me to seek deep healing, awakening, and humanizing. It has given me an extra motivation and perhaps sincerity. It has made me willing to be extra humble (sometimes) in order to find healing, awakening, and humanizing. 

Would I have chosen to not have had these health problems? Yes. Do I see the genuine gifts in them? Yes. Did I ever have a choice? No. This was chosen by life. It’s happening within and as all of existence. It’s the play of life, or the universe, or the divine. 

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How do I experience chronic faituge?

How do I experience chronic fatigue (CFS)? A few friends have asked me lately and I thought I would share my answer here as well. 

The simplest way I have found to explain it is that it’s like having a flu without the fever, runny nose, or sore throat. It makes it hard to do much, exertion deepens the fatigue, and the brain is foggy. Sometimes, it’s like having a severe flu, sometimes it’s a little lighter. But it never goes away. 

I experience the brain fog partly as a “cotton in the head” feeling and partly as a cognitive fatigue. It’s hard to take in complex information, and I get tired quickly when using the brain / mind. 

There are additional symptoms, some of which are a bit weird. For instance, light and sound sensitivity. Temperature dysregulation (too hot or cold, or hot and cold at the same time, or cold sweat). Muscle tension and pain. Sleep problems (not anymore for me). Digestion problems and food sensitivities. Crashes if too much exertion, especially if combined with heat and/or lack of proper food. Feeling better in some climates (for me, warm and dry). 

My best guess is that my CFS was triggered by a combination of a virus infection (Epstein-Barr), exposure to toxic mold, psychological stress, and perhaps more. When I initially got it, it was in my teens following mononucleosis a few months earlier, when I lived in a basement (mold), and had the usual teenage stress and angst.  I got much better after high school when I was able to set my own schedule, make my own food, and engage in activities deeply meaningful to me. And then the CFS came back severely a few months after a pneumonia I never really recovered from, while again living in a moldy environment (Oregon), and stress from my life situation at the time. 

It makes sense to approach it from a multitude of angles and to support and strengthen my system as much as possible. I have found a few things very helpful: Herbal medicine (mostly adaptogens), Tension and Trauma Release Exercises (TRE), Breema bodywork, diet changes (minimize dairy, yeast, wheat, refined sugars, processed foods), mindfulness practices (natural rest, inquiry, heart-centered practices), spending time in nature, resting (do half of what I feel I can do), and energy work (Vortex Healing).

Low energy, its consequences, and how to bring it up

With my chronic fatigue (CFS), I have had plenty of opportunities to notice what happens as my energy level goes up and down. When I am more fatigued, it’s as if the light is dimmed so I get to see more of the things in me lurking in the darkness. In general, I tend to become more sensitive to sounds and activity around me, and I sometimes get to see some of my stressful beliefs more clearly. Fatigue can also look a bit like depression since I don’t have the energy to engage in emotions very much.

For most of us, when our energy level is lower, hangups, stressful beliefs, anxiety, depression, compulsion and more become more noticeable.

So we can find benefits to low energy when it’s here anyway. It makes it easier to notice what normally is under the surface. We can notice, allow, notice how parts of us respond to it, allow that too, and perhaps meet it more intentionally, with patience, curiosity, presence, and so on. Or not. And then notice and allow that. Or not.

It’s obviously good to bring the energy up, for a few different reasons. It supports our bodymind system in healing itself. It reduces many symptoms so our quality of life is higher. And it makes it easier for us to take care of what we have seen – find a different relationship to it, invite in resolution or healing for it, or simply being with it with patience and respect.

How can we bring up the energy? I am sure there are many approaches out there I am not familiar with. Of the ones I personally have tried, herbal medicine and energy work (Vortex Healing) have been the most effective, in addition to rest, moderate activity (within the limits of what I can do without crashing), and improving my diet (low on the food chain, mostly avoiding dairy, yeast, refined sugar, and the most common grains). It also helps, over time, to release tension out of the body (therapeutic tremoring, TRE), resolve and clear up stressful beliefs and trauma (inquiry, parts work, Vortex healing), and reoirent in how I relate to myself, others, and the world (heart practices such as heart prayer, ho’oponopono, tonglen).

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Having CFS is similar to being an athlete

Having chronic fatigue syndrome (CFS) is similar to being a top athlete.

I have to be very conscious about my diet. I need to avoid certain things (in my case dairy, yeast, alcohol, wheat, and to some extent sugars) and make sure I eat low on the food chain and ideally with the seasons and local and organic foods.

I have to make sure I rest enough and give my body and system time to recover, especially after any form of exertion. (Extertion in my case means any physical or mental activity.)

I have to prepare for important events. I need to give myself enough rest, and pay even closer atttention to my diet. (Important events means any time I, in advance, know I will need to extert myself physically or mentally.)

Mindfulness and mental strategies can play an important role.

I can push myself if it’s called for and this is often followed by a physical crash and sometimes collapse. Endurance athletes do this, as sometimes do people with CFS.

In general, I need to keep my body in as good shape as possible through, as mentioned above, diet and rest, and also gentle exercise as I am able (walks, swimming), herbal medicine, gentle forms of yoga, and so on. And I can push myself if it’s called for, even if it’s followed by a crash. (I have learned to avoid this as much as possible as it can take a long time to recover.)

Note: I write about CFS here since it’s part of my life and an important invitation for healing and maturing for me. Also, there is a chance that something I write here could be helpful for someone else with CFS, or that it can help people who don’t have CFS to understand it a bit better.

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The gifts of Chronic Fatigue Syndrome (CFS)

Yet another revisited topic:

For me, Chronic Fatigue Syndrome (CFS) has come with many genuine gifts.

Of course, it’s important to acknowledge all the challenges that come with it. CFS and any chronic condition can bring up grief, anger, struggle, threatened identities, and unresolved issues. And it can lead to loss of work, relationships, money, status, and so on.

But we also have to acknowledge the genuine gifts that can come with CFS to get a fuller picture. These are gifts we may intentionally notice, explore, and even pursue (at least in periods where we have some energy besides what’s needed for basic daily tasks).

Here are some I have found for myself:

It has helped me with my spiritual practice.

From putting effort into my practice, I have found ways that are far less effortful. For instance, even when I did Shikantaza practice (“just sitting”), I put more effort into it than I needed. Now, I am happy to just notice, allow, and rest with what’s here. And that’s a more genuine way of doing this most basic meditation or noticing practice.

Also, since I have been more raw in periods, due to the CFS, I have been able to notice, meet, and inquire into unloved and unexamined parts of me that previously didn’t come as much to the surface.

Earlier, even if I saw all as Spirit, at a more visceral level I tended to associate Spirit – or at least awakening – with certain feelings and states (even if I knew that wasn’t the case). Now, I am able to more viscerally experience what’s here as Spirit including what’s challenging and uncomfortable. (This is still a process, I imagine it will continue to deepen.)

I have explored and delved into a range of new (to me) practices. I have to admit that this has been my tendency my whole adult life, so I probably would have done that anyway. Although the sense of urgency has perhaps been a bit stronger because of the health-related challenges.

It has given me time. And I have used this time to: Rest. Spend time in nature. Explore and investigate the topics I write about here. Explore and investigate other things in life that I tend to not write about or write less about. (Since I want to keep this blog somewhat focused.)  Find deeper healing for my relationships with the world, others, myself, and my life.

It has come with an invitation to drop facades and be more honest with myself and others.

I have learned something about how it is to face challenges in life. In my twenties, I often had the thought that life was too easy. Now, I know something about going through challenging periods of life.

I have learned about a range of new (again, to me) approaches to healing, including some I may have been less interested in otherwise. For instance, herbal medicine, therapeutic tremoring (TRE), and Vortex Healing.

I have found a deeper appreciation for the simple things in life: a cup of tea, resting, friends, family, nature. I always appreciated these, but it’s different now.

I have found a way to often be genuinely content, and with a deep appreciation and gratitude for my life as it is.

Of course, it’s not all a dance on roses. There are still daily challenges. I sometimes get frustrated when my body doesn’t play along as I think it should (most recently today). I sometimes get annoyed and sad when I consider the many losses connected to health challenges. I sometimes get angry when things are not as my mind thinks they should be. I still sometimes have fear or concerns about the future. I sometimes feel embarrassed when I consider how others may see me. I have small flashes of envy when I see someone living the life I did or thought I would at this time in my life. But all of these experiences are part of being human. They are here to protect me, and they come from deep care for me. And they do happen within and as what I am. And there is often deep gratitude for my life as it is, including all the challenges.

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Victim and victimizer

I am briefly revisiting this topic:

When we explore identities, it’s helpful to explore both ends of the polarity.

For instance, if we have chronic and bothersome issues in our lives, we may also have a victim identity connected with it. It’s helpful to explore this identity and perhaps find healing for it. At the same time, we have a victimizer part in us. We couldn’t have a victim part without the victimizer part. They depend on each other to exist, and they hold each other in place. If we only address the victim part, we only do half (or less) of the work and the release will be partial.

An example from my own life is the victim identity connected with the chronic fatigue (CFS). Yes, there is a victim identity and it’s helpful to inquire into it and invite healing and release for it (through inquiry, TRE, Vortex Healing etc.). But that’s less than half the picture. The rest is the internal victimizer that creates and holds the victim-identity in place. This one may be more difficult to notice since we tend to see it mostly “out there” in life, circumstances, or others. But it’s equally, or really, in here, in me. And that’s where I need to explore it if I wish to find more freedom around the whole victim-victimizer dynamic.

The freedom and relief that comes from this work makes it worth it in itself. And, who knows, it may even impact my physical health. The release may support my body in healing itself better. So it’s definitely worth the time and investment required to find some healing around this and many other identity-sets.

Note: When I have worked on my own internal victimizer using Vortex Healing, I have found it helpful to approach it from slightly different angles. For instance, intending to work on the victimizer, the bully, the self-cruelty, and more, one at a time.

Also, when I say that working on just one of the pair of parts or subpersonalities, it’s because there is the other half, and there is also the awareness and exploration of the dynamic within the pair. So if we work on just one of a pair, it’s less than half of what we need to explore to find a fuller release.

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Chronic fatigue and therapeutic tremoring

From my own experience and that of others, it seems that therapeutic tremoring (TRE) can be very helpful for people with chronic fatigue syndrome (CFS).

Since it releases tension out of the system, it can help improve sleep, reduce anxiety and depression, and lead to more comfort and well being in general.

Equally important, therapeutic trembling may allow energy tied up in tension to release and thus become available to the (other) needs of the system.

Both help with everyday functioning and both may support the system in healing itself.

There are some TRE precautions for people with CFS. Mainly, do the tremoring for only short periods at first, and follow the signals of your system. As your system gets more familiar with it, and you get more familiar with how it responds, you can increase the frequency and length of the tremoring sessions.

Several notes:

I use the word “system” here instead of body, mind, or even bodymind. I could say “bodymind system” since I am referring to the whole of the human being, body, mind, and all. When I use the word “tension” that similarly refer to tension as having body and mind components.

When I say “trembling” or “tremoring” it’s a lot more than just trembling. It can be any kind of movement (autonomous, not created through intention) including “butterflying” of the legs, slow rhythmical movements, shaking, subtle vibrations, stretching, jumping, sounds and more. All ways the bodymind – outside of our conscious awareness and intention – invites tension to release when it’s allowed and invited to do so.

And when I put TRE in parenthesis after “therapeutic trembling” it’s because TRE – Tension and Trauma Release Exercises – is perhaps the simplest way to allow therapeutic trembling to happen for us modern people. Therapeutic trembling is built into us through evolution, but in our modern culture, we have learned to suppress it. We may have learned it’s a sign of weakness, or embarrassing, or that it means we are out of control (and that’s bad), or we don’t understand what it’s for, or we just have a general suspicion of the inherent wisdom of the body, or we simply think there is no inherent wisdom in the body. For whatever reason, we have learned to suppress it, so we need to unlearn and allow the trembling to happen. And TRE is a good tool for just that.

Also, I should say that although it seems that therapeutic trembling can significantly help people with CFS, the extent will vary between people. It does require sticking to it for a long period of time, over months and years (although the progress will be noticeable from early on). And the underlying medical conditions may vary between people since CFS is an exclusion diagnosis.

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My approach to Chronic Fatigue Syndrome

How do I approach my Chronic Fatigue Syndrome (CFS) and brain fog?

We are one seamless system, so it makes sense to take a holistic, pragmatic, and ecletic approach. To use whatever works and approach it from many different angles. At least until the causes are more pinpointed and/or we have found simple and effective treatments.

Here are some things that have been helpful for me.

Rest. Avoid excertion.

Nature. Walks.

A diet that works for my body. In my case, eating less processed foods, low on the food chain, and organic and local as possible. Mostly vegetables and some meat and fruit. Mostly avoid wheat, dairy, and sugar. Listen to the body. Follow the body’s guidance.

Herbal medicine. For me, right now, eleuthero, echanacea, kapikachu. Stangeland’s herbal tea.

Resting with/as what is. Allow. Notice. (Shikantaza, “just sitting”.)

Western medicine. Check for deficiencies, organ problems, known illnesses with similar symptoms, toxic mold exposure etc.

Mindful body-centered activities. For me, it’s Breema but it could also be (and has been) Tai Chi, Chigong, and yoga.

Therapeutic trembling to release tension and trauma. Over time, this releases and frees up energy previously bound in tension. For me, through Tension and Trauma Release Exercises (TRE).

Befriend the symptoms and my life. Change and heal my relationship to the symptoms and my body, myself, others, and life. I mostly use ho’oponopono and tonglen, and also inquiry and Vortex Healing.

Use the CFS and my life situation as an opportunity to see what’s left to heal at an identification and emotional level. As above, I am mostly using inquiry, ho’oponopno, and Vortex Healing for this.

Explore and find healing for any emotional issues that may have contributed to the CFS and Brain Fog (created a weakness, suseptibility). E.g. wanting to avoid life, finding refuge in the CFS. Again, inquiry, ho’o, and Vortex Healing.

Seek out and strengthen nourishing relationships. Heal stressful ones (at least from my side). Limit those who drain me.

Organize my life, as much as possible, so it’s simple and nourishing.

Use energy work to strengthen and balance the system, and clear physical and emotional issues contributing to the fatigue and brain fog. In my case, this is Vortex Healing.

Do more of what gives meaning in life. Zest.

And other things as I discover and am drawn to it.

A brief note about Norway: To me, taking a pragmatic holistic approach is natural. And that’s what I have seen among people I know in North America having similar health issues.

But in Norway, I have sometimes noticed a strange polarization between those taking a psychological approach (Lightning Process etc.) and those favoring a physical approach (which partly means waiting for doctors to find a treatment). They seem to overlook that we, as human beings, are one seamless system and that the mind-body distinctions is imagined. By taking imaginary sides in that way, we limit our options. And that doesn’t make sense when it comes to something as important as our health. It makes more sense to take a holistic and pragmatic approach. And, of course, many in Norway and everywhere else do just that.

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Brief update

I just returned from Core Veil in London, a Vortex Healing course with Ric Weinman. I feel it helped clear, stabilize, and perhaps deepen a lot of the haphazard openings and awakenings from my pre-Vortex Healing days. And the course seems to also have strengthened my system considerably.

Over a couple of tea-breaks, Ric took a look at my chronic fatigue (CFS) and brain fog. He said it seems that a CFS (inducing) virus is still hiding out in my system (which would explain a great deal), and did a couple of brief treatments to clear it out. It will take some time for my system to adjust to a potentially virus-free existence. We’ll see how it unfolds.

A few words about viruses and CFS: There are probably many things that fall under the CFS label, including undiagnosed known illnesses and various subgroups of “true” CFS. Sometimes, CFS is called Post Viral Fatigue Syndrome which is fitting since it often comes after a viral infection. (For me, mononucleosis in my teens.) Many of the symptoms associated with CFS fit a viral infection. For me, it feels like having a flu – sometimes strong and sometimes less so – without the fever, runny nose, or cough. The brain fog and wooziness is there. The fatigue and tiredness. Worsening condition after exertion. Brain fog and inability to focus as before. Unusually sensitive to noise and sometimes light. Wanting to lie down and rest. (Or being unable to do anything but lying down.) And a rest that often doesn’t feel restful or nourishing. All of that is similar to having a flu or a similar infection.

If there is/was still a virus in my system, it also explains why the energetic work seems to actually work – in clearing and energizing pathways and chakras and doing many other things – but it doesn’t significantly change my overall health situation. The virus holds it back. So we’ll see what happens if a hidden virus was the key and the virus now really is gone.

CFS and bodymind

The body-mind is a seamless system, as is the individual and the larger social and ecological wholes. It’s all a seamless system.

Chronic Fatigue Syndrome (CFS) and other mystery illnesses function as a reminder of this. To understand it, manage it, and treat it, we need to take a broad and inclusive approach. At least, unless they find one simple solution to curing it (which may happen).

For now, it seems that different approaches work for different people in terms of managing it and sometimes healing from it. Activity management is a universally helpful approach to managing CFS, perhaps since we all do it anyway. It’s part of human life. And some have healed themselves through yoga, or some form of cognitive therapy, or herbal medicine, or eating more, or through other approaches.

In my case, what preceded the CFS, the symptoms, and what helps, is not original. The initial onset was preceded by mononucleosis, perhaps combined with typical teen stress which put an extra load on the system. I got much better after a few years, mostly because I found myself in a situation where I could manage my schedule more freely. When there was a relapse of the severe CFS many years later, it was after severe pneumonia that I wasn’t able to completely recover from.

It’s also clear that it’s connected with food intolerances (which makes the symptoms worse). And it may be connected to mold since I lived in a basement when it first happened, and I lived in a house in Oregon with mold problems when I had the relapse.

My approach to managing and healing from CFS includes:

Avoiding foods my body reacts to. (Dairy, wheat, sugar.)

Regulating my activities. Rest when needed. Do a little less than I feel I can (to avoid crashes).

Herbal medicine. Right now: siberian ginseng (energy), echinacea (immune system), kapikacchu (energy).

Natural rest, inquiry, heart centered practices. This helps me change my relationship to the CFS symptoms and it’s impact on my life, and also explore any issues that may in any way contribute to it.

Tension and Trauma Releasing Exercises (TRE). TRE releases tension out of the muscles, which in turn frees up energy.

Eating enough. It seems that this is a peace of recovery for many. Making sure the body has enough calories and nutrients to have a good metabolism. (Also, recently adding a small layer of fat to my body has helped me avoid energy crashes.)

Vortex Healing. This has helped me greatly although it’s also a slow(ish) process. I have used it to clear the mono-virus that was still in my body when I started with VH, clearing and optimizing my energy system, and also working on emotional issues impacting my physical health and energy levels.

The Vortex Healing approach to CFS and similar health issues is a reminder of what I mentioned above. It’s best to take a broad and inclusive approach and leave no stone unturned. Prioritize and explore.

Note: I was motivated to write this by a somewhat odd discussion in a Norwegian CFS Facebook group. Some seem to take the view that cognitive therapy approaches can heal CFS (which it can for some but not others), some that it’s a purely physical illness (it certainly has that component, and that’s where a “magic bullet” cure may be found eventually), and some take a more inclusive view. As I mentioned above, with any mystery illness it makes sense to take a broad and inclusive approach and leave no stone unturned.

Chronic fatigue as a modern form of monasticism

Some years ago, I talked to a therapist in England who referred to chronic fatigue (CFS) as a modern form of monasticism.

I can see how that fits.

CFS requires a withdrawal from distractions. It creates a situation where we come face to face with ourselves, including what we have avoided in the past. We are invited to question basic identities and beliefs and find what’s more true and helpful for us. We find ourselves in a situation where we may have to go deeper with any spiritual practices we are familiar with.

CFS may also be connected to feeling off track in life, so this is a chance to notice and return.

More specifically, any serious or chronic illness tends to challenge our basic beliefs, identifications, and hopes. A lot is stripped away, including a great deal we found comfort and took pride in. It may bring up our deepest fears. Life invites us to notice and question all of this. And it also brings up questions such as who am I without all that? In what way is my life still of value?

In some ways, any challenging life situation is an invitation to release identification with more superficial identities (roles, work, gender, preferences etc.) and shift the center of gravity into more universal ones.

We can also ask, what are the genuine gifts in this situation? If this is the best that could have happened, why would that be? How am I invited to relate to this, my life, and the world?

And if we have a spiritual orientation, it’s perhaps an invitation to go deeper in inquiry, surrender, prayer, heart practices, and whatever else we are drawn to. In my case, one example is that it helped me find a more genuinely restful and basic form of meditation (notice what’s here, rest with it, notice it’s already allowed).

So in all of these ways, and probably several more, CFS can be seen as a modern form of monasticism, or at least a retreat. It can serve some of the same functions, if we let it.

Note: I have written this post in a quite loose and unsystematic form. I chose to not go into typical beliefs and identities that may be challenged by CFS and any chronic illness, and also the many approaches for healing our relationship with CFS, our life, and the world that could be used. I have done so other places in this blog.

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CFS and how my body puts functions on rotation

When the chronic fatigue (CFS) is strong, I find myself mostly resting. And in good periods, I can usually get most things done.

But when it’s medium strong, as it is now, I notice how my abilities seem to cycle.

For instance:

I may have OK mental energy and not so much physical energy, or the other way around. If the mental energy is OK, I can get some paperwork or writing done. If the physical energy is OK, I may be able to do some errands, clean, or go for a good walk.

Some mental functions may work OK but not others. I may be able to read but not write, or edit photos but not have a long conversation, and it may switch the following day.

Some physical functions may work OK but not others. I may be able to clean but not go for walks, and this too may change the next day.

It’s as if my bodymind has put the different functions on rotation. My limited energy is rationed out, and each area of life gets its day. But not all at once the way it was before the CFS. There is a beautiful wisdom in it. It means I am able to do different things on different days without trying to do too much on any one day. So over a few days, I may be able to cover many of the things on my list.

The trick is to go with the flow as much as possible and trust that a day will come when I’ll be able to do what I didn’t or couldn’t do today.

It also depends to some extent on what’s required. If something is strongly called for, and I have a reasonably good day, I may be able to mobilize enough energy to get it done – although it tends to come at a cost.

And if something is scheduled, I am often able to prepare – through rest and taking care of myself – so I am able to do it on that particular day.

I should also say that some things that seem especially daunting is hard to get done even on good days or in good periods. That’s when it’s good to have help from others.

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CFS, Lyme and personality changes

The real reasons behind the CFS label, and also Lyme infections and co-infections, often create personality changes. Along with fatigue and brain fog and some other things, these personality changes can be among the most challenging symptoms. They certainly have been for me.

In my case they include:

Reduced executive functions. Poor memory. Difficulty making and following through on plans. Difficulty taking care of essentials in life.

Hypersensitivity to sound, chemicals, and my environment in general. Avoiding noisy places.

Having to say no to or cancelling invitations due to fatigue and feeling terrible. (And people sometimes interpreting it differently and getting upset.)

Withdrawing from family and friends due to fatigue and brain fog. (Again, with people sometimes interpreting it differently and perhaps themselves withdrawing.)

Emotional rawness, turmoil and instability. Anxiety. Dread. Irritability. Bursts of anger. All of these are uncharacteristic for me as they have played out after the serious CFS returned and also after I got Lyme.

Vulnerabilities, weaknesses, and hangups amplified and coming to the surface. These surface since there isn’t much energy to cope with them as I did before the CFS.

And the fatigue, brain fog, and what’s listed above, often leads to missing opportunities, losing much of what’s important to me, and finding myself in life situations I couldn’t have imagined finding myself in.