Dream: In charge of a hospital/rehabilitation center

I am newly in charge of a hospital and rehabilitation center. I used to favor activity and short stays for the patients. Now, I want to modernize and encourage deep and long rest, and then activities only after people are thoroughly rested and recovered. A nurse who is deeply into this way is on my side. I ask her to help me, teach me, and be in charge of the transition. An older doctor is of the old school and we talk about how to make the transition easier for him. The nurse is kind, wise, intelligent, and one hundred percent dedicated. I am deeply grateful we are working on this together.

As I woke up, I knew this dream was about the radical rest approach to Chronic Fatigue Syndrome. The night before, I had talked with a friend of mine about it and how something in me is deeply drawn to it. I told her I am dreaming about it (in the sense of waking dreaming). Now, I also have night dreams about it.

Apparently, I have a metaphorical nurse in me who is deeply into and loves this approach to recovery, and who is wise, kind, and dedicated. We are a team, and I have put her in charge of the transition since she knows more about it than I do.

The old doctor is my own old mindset about this. I used to rest to recover after an activity and then immediately get back into activities and spend the little energy that was saved up. I still notice this tendency in me. This is part of the before, during, and after rest, which I am quite familiar with and is essential. Now, I want to engage much more in the “extra” rest and allow my body to have resources for deeper healing.

I am newly in charge of this hospital and rehabilitation center. I am definitely newly in charge in that I want to transition from the old mindset (spend energy as soon as it’s here) to the new and modern one of resting extra so the body has enough resources to actually heal.

The dream was all in Norwegian. Likely because I am in Norway now, and maybe also because Norwegian is my first language and more intimate and close to me. It’s more close to the center of who I am. It was also in Norway that the CFS initially started, in my teens, so maybe it’s fitting that I am working on how to better relate to it here.

Image by me and Midjourney

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Chronic Fatigue Syndrome & two types of rest

In the CFS world, some talk about two forms of rest. Or, more accurately, two phases of rest.

TWO TYPES OF REST

REST FOR RESTITUTION

The first type of rest is for restitution. We spend energy through activity and then rest to recover that energy. In the best case, our body returns to where it was before the activity. In my experience, if I am in a CFS crash or an especially bad period, this phase can take a long time, maybe days or weeks, or even months or years. In a better period, it can take a day or so.

REST FOR HEALING

The second is healing rest. This is what happens when we rest beyond restitution and don’t spend that energy on activities. Here, the body can use the extra energy for actual healing, for improving beyond just recovering from daily activities.

TWO PHASES

As mentioned, these are two phases of rest. First, the body’s priority is restitution. When that’s accomplished, and there is no need to spend the energy on activities, the body’s priority is healing.

THREE WAYS TO APPROACH REST

There are a few general ways to work with these two types of rest.

MINIMAL RECOVERY AND ROLLERCOASTERING

The first is what many do at the beginning of living with CFS. We spend energy as soon as we have it. There is so much we want to do, so when there is metaphorical money in the bank, we spend it. This leads to a rollercoaster ride of ups and downs, crashes and recovery. In the worst case, we can crash hard which leads to a worsening of the condition that can last for months or years.

STABILIZING AND FUNCTIONING AT A SLIGHTLY IMPROVED LEVEL

The second is to take enough time for restitution rest and some healing rest to stabilize. This, in itself, is an improvement in our condition, and it can lead to functioning at a slightly better level. Since we still don’t allow for regular healing rest, there isn’t too much further improvement.

SCHEDULING ONGOING HEALING REST

The third is to schedule healing rest consistently and regularly, ideally daily. In theory, this will lead to continued improvement since the body has the energy to continue healing. It’s a form of extreme rest, and I assume it takes a certain amount of readiness and intention to do it. The readiness likely comes from living with the first two approaches for a while and seeing that they ultimately are not satisfying.

MONEY METAPHOR

A money metaphor can be useful here. Our body’s energy is like money in the bank.

We can spend it as soon as it comes into our account, and sometimes more than what comes in. We can learn to have a bit in the account and not spend more than what comes in. And we can regularly spend less than what comes in so it accumulates over time.

The first is a precarious situation. The second is OK but not as good as it could be. And the third is the wise choice over time, and what many of us find we genuinely want after experiencing the two first for a while.

REST BEFORE, DURING, AFTER & EXTRA

All of this goes back to a simple guideline for CFS: Rest before, during, after, and extra.

Resing before any activity saves up energy so we have some to spend.

Resting during an activity helps us reduce the impact.

Resting after allows for restitution.

Resting extra allows for healing.

WILL IT WORK FOR EVERYONE?

Will scheduling in healing rest bring about improvement in the condition of everyone?

I don’t know. What I know is that it likely won’t hurt. It’s giving our body its best chance of recovery, which is always worth it.

I suspect it will help everyone to some extent. It may lead to a dramatic improvement over time for some. And it may lead to a more moderate improvement, or perhaps just stabilization, for others .

It may depend on the cause of the CFS. The CFS label is likely used for a range of conditions caused by a range of different things.1

It would be very interesting to do a study on this. Of a group of people diagnosed with CFS, how many improve through some months of extreme rest, and in what ways and how much? How many stabilize? How many experience an actual improvement in their ability to function? Is there a difference depending on the particular form of CFS and what likely caused it in each case?

IN MY CASE

I am very familiar with the first approach to rest. It’s what I did when I initially got CFS in my teens, and also during one phase when it returned in my 30s.

I am also familiar with the second. It’s what I have been doing over the last several years.

The third is more unfamiliar to me, and something I notice I am fascinated by. My system seems to crave it. (I am strongly drawn to be in a quiet place in nature for a long time, resting). I want to bring it into my life, and it’s all about priorities and making space for it. (I do have some practical things to take care of, with a timeline set by circumstances and others, so it may be that I’ll go between number two and three for a while until I am in a situation where I can rest more fully and consistently. Although I know this is ultimately a matter of priorities. What’s most important to me?)

A FEW MORE WORDS

As usual, there is a lot more to say about it.

Our culture tends to value productivity highly. We gain value through being active and producing something. Many of us have our identity and self-worth wrapped around activity. That’s one reason it’s often difficult to rest beyond restitution. It feels wrong somehow. It’s good to be aware of this, question these assumptions, find our genuine value independent of our activities, and perhaps even redefine productivity.

For instance, just like a baby and any life, I have value independent of any activities or ability to produce. Also, if I have CFS, one of the most valuable and ultimately productive things I can do is to schedule regular extra and healing rest. It’s what gives my body a chance to stabilize and perhaps even recover and heal. Nothing is more important than that.

The rest during an activity can happen in two ways. One is to take breaks. The other is to do things slowly and avoid stress. I schedule in plenty to time. I do it slowly with slow movements. I take breaks. And so on. Also, if there is a rush, or I feel pressure or a push to do something, I typically choose to not do it if I can. It’s not worth it.

I find it helpful to minimize or avoid anything that masks the natural signs from my body. I want to be open to and in tune with any signs of having done too much, or being at the edge of doing too much. That’s why I generally avoid caffeine, and I also find it helpful to avoid too much sugar. (Not always successful in the latter but working on it. For me, it’s a matter of noticing the discomfort sugar leads to in my body.)

It’s also important to be aware that the more activities we rest from, the deeper the rest tends to be. Even listening to an audiobook takes energy. It may be fine, but silence can give an even deeper rest.

Over time, we can also do things to deepen our rest. Rest means rest from stress. The more we can minimize stress in our life, the deeper and more fully we can rest.

Stress is ultimately created by our stressful thoughts and it sits in our body. We can release some of this stress through cognitive therapy or inquiry. We can also release stress from our body through gentle movement (yoga, tai chi, Breema, etc.) and neurogenic tremors (Tension & Trauma Release Exercises).

A NORWEGIAN ARTICLE AND BOOK

Here is an excellent Norwegian article on the two types of rest. The website is for the book Aktivitetsapassing which goes in depth into this and more.

NOTES
(1) In my case, I have the classic CFS that followed mononucleosis (Epstein-Barr virus), I assume combined with other stressors including mold and life stress.

The image is created by me and Midjourney

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Patterns in misophonia & sound sensitivity: humans vs nature

Since I was little, I have had misophonia and sensitivity to sounds. The misophonia is mostly triggered by chewing and paper and plastic rustling, and the sound sensitivity mostly to loud sounds and noise.

GENERAL PATTERNS

I have noticed some general patterns.

My system is more sensitive when I am exhausted or stressed, and it’s much easier if I am rested and relaxed.

The misophonia and sound sensitivity is triggered more easily when the sound is ongoing. The reaction builds up over time.

And I get more stressed if I think I am unable to do something about it. If I cannot do anything about the source, if I don’t have anything to put in my ears (often tight earbuds with music), or if I cannot remove myself from the sound. (That’s why traveling with others in a car, bus, train, or plane can be stressful for me.)

If I am more resourced, the sound doesn’t last too long, and I can do something about it, it’s much easier to deal with.

THE SOURCE OF THE SOUND

And there is also a difference depending on the source of the sound.

If the source of the sound (for instance, chewing sound) is a non-human being or a baby, it’s usually completely fine with me. I may notice a small reaction far in the background, but it’s OK.

If the source is a human that’s not a baby, that’s when the misophonia is triggered.

And it’s the same with noise sensitivity. If the source is humans, it can feel overwhelming. If the source is nature, it’s typically fine.

For instance, I am currently in the countryside in the Andes mountains (El Caucho outside of Barichara). Yesterday, there was construction noise nearby which I noticed bothered me. This morning, a neighbor had the radio on loud, which bothered me. (Especially since it’s Sunday at 5:30 am), while the guacharacas loudly crowing much earlier didn’t bother me at all.

WHAT THIS SUGGESTS

This suggests that my reaction is mediated by my mental field.

If the source is “innocent” as my mind sees it, there is less reaction.

And if I have stressful thoughts about the source, the reaction is stronger. Some of the thoughts I have identified and explored are “they should know better”, “the sound is aggressive” and “this is a symptom of our destructive civilization” (loud machines, chain saws, leaf blowers), “he is inconsiderate”, and so on.

WHAT I CAN DO ABOUT IT

These patterns give me several cues for what I can do about it.

I can continue to support my system to rest and build up energy. (I have Chronic Fatigue Syndrome so this is important for me in general.) I can make sure to get good sleep. Eat well. Rest before, during, and after any activity, and extra. Take my vitamins and herbs. (Vitamin D, Siberian Ginseng, and Echinacea seem especially helpful.) Receive energization with Vortex Healing. (Amazingly helpful.)

I can continue to find ways to manage the situation when it happens. I have earbuds with me. For longer travels, I bring noise-canceling earphones. If I am about to travel with people in a car, let them know in advance. If I am in a public space and people close to me are loud, I go somewhere else. And so on.

I have found it helpful to ask myself some questions. Is this too the voice of the divine? (I notice it directly so it’s not a “trick” and I’ll still do the other things.) How I would respond if the source was a baby or non-human being? Are not humans and human civilization also nature?

I can also explore mental representations triggered by these sounds, what they mean to me (underlying assumptions, associations), how I relate to them, and what’s more true for me. I have already done this with The Work of Byron Katie and the Kiloby Inuiries, and it has helped a lot, and there is more to discover.

WHAT’S THE CAUSE?

What’s the cause of misophonia and sound sensitivity?

I am not sure. It’s likely a combination of several things:

My stressful thoughts about the sounds and what they mean.

How resourced my system is.

We evolved in a generally much more quiet environment than many of us live in today, and this likely puts a lot of stress on our system. It’s not surprising if some of us are extra sensitive to sounds and noise.

And it doesn’t matter so much. I have some ways to work with it anyway.

Image by me and Midjourney. And, no, I won’t keep going on with black-and-white woodcuts forever! It’s just what I am drawn to right now.

How CFS feels

This perfectly captures how it feels to live with Chronic Fatigue Syndrome (CFS).

I may look fine or OK to others. I am often able to mobilize for short periods and appear relatively normal. And my experience of myself is very different.

HOW IS IT TO LIVE WITH CFS?

How does it feel? It’s almost impossible to describe, but here are some attempts:

It feels like having severe influenza minus the congestion and fever. It’s equally difficult to think and get up from bed and do things.

I have strong brain fog: It feels like cotton in and around my head. It’s difficult to remember things. It’s difficult to make good decisions. (Sometimes, it’s difficult to make even the simplest decisions.) It’s difficult to take in information. It’s difficult to stay focused for more than five or ten minutes. (I typically have to watch movies in short segments over several days.) It’s difficult to string together words. (which is why these writings are short, choppy, and feel like a list of points.) It’s often difficult to find words. In bad periods, it’s difficult to relate to life and what comes up in the way I do when I have more energy. In short, the executive functions are impaired and it gets worse the worse the CFS is.

I get worse after just about any activity, and sometimes a lot worse. Any type of “explosive” activity (walking fast, heavy lifting, etc.) is just about impossible since it causes a severe crash. And any type of activity at all worsens the symptoms and requires a period of recovery. Simple and essential daily life activities are often all I can do. And, in periods, even that’s very difficult.

I have to schedule extra rest before, during, and after any planned activity. If I am meeting someone, or if I have an appointment of any type, I typically have to rest for days before and after. I have learned to do things slowly.

It takes a long time to recover from infections and other illnesses.

In short, my system lacks resources. It lacks the resources to do things. To have conversations. To take in information. To process. To think. To consciously and intentionally relate to life and what’s coming up in me. To recover after other illnesses. And so on.

At an energetic level, I and others have found a pattern: My system seems very disorganized when I have a crash. That’s perhaps not surprising. It takes energy to keep a mind-body system organized. When it’s energized (using Vortex Healing), my system again becomes more organized.

SOCIAL, MEDICAL & POLITICAL ASPECTS

This is challenging enough in itself. On top of this are the social, medical, and political aspects.

Most people don’t understand it very well and may assume it’s just mild tiredness. They typically see me when I am able to mobilize for a few hours, or in the better periods, and they don’t see what’s happening the rest of the time. Some get upset that I have to cancel appointments, and don’t realize how much effort I put into trying to make it happen. Or they think that my long periods of not staying in touch mean I don’t value the connection.

CFS is a kind of “pariah” illness. It’s poorly understood. There isn’t much research. Politicians and policymakers don’t take it very seriously. Many doctors don’t know much about it. There is no mainstream medical treatment. (In Norway, the largest newspaper – Dagbladet – seems to have a campaign to show that CFS is just a matter of “pulling yourself together”.)

This will very likely change. I am sure they will understand the mechanisms better. (The trigger seems to often be a combination of physical and/or psychological stress, often involving a viral infection.) They may even find an effective treatment or cure. If or when that happens, CFS will be included among the acknowledged and understood diseases. (There will still be diseases in the pariah category going through a similar process.)

HOW I HAVE EXPLORED IT

I have lived with this since my teens, and I have tried a wide range of approaches.

I have found a diet that works for me. (Eating low on the food chain. Reduce or avoid sugar, wheat, and dairy. Drink lots of water / herbal teas. Have bone broth daily. And so on.)

I have found that sun and moderate to warm climate work well for me. (Cold weather impacts my system strongly, as does very hot weather. Both place an extra demand on the very limited resources of my system.)

I have learned to rest before, during, and after activities. I have learned to portion out tasks over time and move slowly.

I have used a wide range of herbal medicines. For instance, a combination of Siberian ginseng (eleuthero) and echinacea seems to work well. (I fill my own capsules and have around five large ones daily. Siberian ginseng gives energy and echinacea helps my immune system. I have used this for long periods, and am now taking a break.)

I discovered that hyperthermia treatment seemed to help me greatly for several months. (I would like to try it again but it’s expensive and I need to travel quite a distance for it.)

I have tried a wide range of alternative treatments. What seems to work the best is Five Element Acupuncture. (Helps for a day or a few days.) Breema. (Gives an amazing sense of health and wholeness beyond the struggles of this human self). And Vortex Healing. (Energization and removing pathogens.)

And I have also found different forms of inquiry to be very helpful. (The Work of Byron Katie, Kiloby inquiry, Headless experiments, Big Mind process, and so on.)

UPSIDES

There are also upsides. It has been an invitation for exploration and transformation. It’s an invitation to find my value independent of my resume or activities in the world. To be more authentic and transparent. To find value in rest. To find the gift in asking for and receiving help. And so on.

In many ways, CFS is an invitation to examine and see through many of the assumptions in our society and find what’s more true for us.

It can bring a correction to some of the lopsidedness of our current civilization. (Including valuing people according to their resume or activities, valuing doing over resting, and so on.)

Brief notes on healing and awakening and occasional personal things – vol. 44

This is one in a series of posts with brief notes on healing, awakening, and personal things. These are more spontaneous and less comprehensive than the regular articles. Some may be made into a regular article in time.

FORGIVENESS

Why would I want to forgive? For me, the answer is that it feels better.

Does forgiveness mean not having boundaries? Not at all. Forgiveness and boundaries go hand in hand.

How can I find forgiveness?

One answer is specific approaches like understanding, heart-centered practices (tonglen, ho’o, metta), inquiry like The Work of Byron Katie, and so on.

Another answer is more general. I find it through finding forgiveness for myself. The more I can forgive myself, and live in that forgiveness, the more I can find forgiveness for others.

Is it easy? Not necessarily. Wounds can go deep, and wounds make it difficult to find genuine forgiveness. Healing opens up for forgiveness. Those two too go hand in hand.

SEPTEMBER 1, 2023

BRAIN FOG

How do I experience the brain fog?

It has several aspects.

It feels like cotton in and around my head.

It makes it difficult to remember.

It makes it difficult to take in information. (And my brain gets tired quickly.)

It makes it difficult to process information.

It makes it difficult to string words together and communicate.

In general, the more drained and exhausted my system is, the less energy there is for my executive cognitive functions. (Thinking, talking, making decisions, intentionally relating to what’s coming up, etc.)

It really seems that life wants to experience brain fog through and as me these days.

The baseline brain fog is from the onset of CFS in my teens, following a mono-infection.

When the CFS dramatically worsened 10-15 years ago, following severe and long-lasting pneumonia, it got a lot worse. My memory got a lot worse after Covid last year. (Teflon brain.)

And I suspect severe Lyme some years ago and septic shock last summer also play a role.

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Eyesight and CFS

This is one of the many things I suspected was connected with Chronic Fatigue Syndrome (CFS), and I later realized is a common symptom.

EYESIGHT AND FATIGUE

My eyesight is strongly affected by how my system is doing in general.

If I am rested, my eyesight is good. I see relatively well both at a distance and close up.

And if my system is tired, my eyesight can be dramatically worse. I see double. I have trouble seeing clearly at a distance, and sometimes even closer up.

On a typical day, my eyesight may be good in the morning, and noticeably worse in the late afternoon and evening.

This means that if my sight is checked by an eye doctor, they may get dramatically different results depending on how I am doing when they do the tests.

EYE EXERCISES

I am also reminded of an eye-related story.

I used reading glasses in my teens and early twenties. In my mid-twenties, I started doing weekly Feldenkrais classes. And in one class, focusing on the eyes, I had a moment of strong discomfort in and around my eyes. (Some may call it an emotional or energetic release, but I don’t know.) A couple of weeks later, I sat on my glasses. When I went to the eye doctor to have my eyes checked for new glasses, she said: “Your sight is perfect, you don’t need glasses”. I asked if eyesight can improve over time, and she said: “No, that never happens”.

After this, I explored different approaches to training the eyes, including the Bates method. (I especially enjoyed “Natural Vision Improvement” by Janet Goodrich.) I did the eye exercises daily for a while, and have done them on and off for many years now.

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Own inquiry: My body shouldn’t be so tired

It’s been a while since I have shared formal inquiry explorations here, including The Work of Byron Katie, so I thought I would restart that. (I used to write a lot more explorations.)

STATEMENT & SITUATION

Statement: My body shouldn’t be so tired.

Situation: Lying on the sofa five minutes before an inquiry session. (The Work on Zoom.)

INQUIRY

1. Is it true? Yes, in that situation it feels true.

2. Can you know for certain if it’s true? No, I cannot know for certain.

3. What happens when you believe that thought?

I feel extra tired. I notice the symptoms of tiredness. The tiredness comes to the forefront. It feels overwhelming. A part me of wants to cancel. I imagine others judging me. I judge myself. I see myself in the session unable to follow the question and inquiry. I see myself not being able to talk clearly and coherently. I see images of the facilitator judging me. I feel ashamed. I feel I am to blame. I tell myself I could have prevented it (through more resting, different food, taking more herbs). I blame myself for not being “more perfect” in how I take care of myself, especially the last days. I compare myself with others and how I used to be, and how I imagined I would be. I see them as energetic and active, and myself lying here unable to even do inquiry.

4. Who would you be without that thought? How would you be if you were unable to think that thought in that situation?

I notice myself as whole. I am curious about the inquiry and what will come out of it. I am looking forward to the inquiry. I notice excitement. I notice my thoughts and words come from more clarity. I feel lighter.

Turnarounds

TA1: My body should be so tired.

(a) It is. That’s how life unfolds. There are likely innumerable causes for it, and I am aware of only a tiny fraction. It’s how the whole of the universe moves locally here.

(b) It helped me do this inquiry. I had initially planned to do another one, and noticing the tiredness and this thought shifted me to do this inquiry.

(c) It has helped me do a lot of inquiry into identities, identifications, beliefs, and so on. It’s helped me examine the beliefs in my culture around this, as they are here in my own mind.

(d) It has helped me be more real with others.

(e) It has helped me understand and accept others as they are, especially if they have health challenges, and also more in general.

TA2: My thinking shouldn’t be so tired.

(a) I notice that unexamined thinking makes me feel tired, and when I examine and find what’s more true for me, I feel more clear, lighter, and engaged. I often find energy.

(b) The “should” thoughts are old and worn out. They are old and tired, in that sense.

TA3: My body shouldn’t be so energetic.

(a) I had sorted and organized earlier in the day and got into a slight adrenaline rush. I surfed on adrenaline, which is likely why I felt tired in the hour before the session. I am aware of this, and counteract it with rest and slowing down, but there is room for improvement.

(b) Also, looking at this thought makes it even more clear that the two complementary thoughts – my body shouldn’t be so tired / my body shouldn’t be so energetic – are both thoughts. They are literally imaginations.

REFLECTIONS

I did this inquiry during the session, and it was very helpful. I found a lot more than I wrote down here.

In the past, question three and the turnarounds were the most interesting to me, and I often couldn’t find so much with question four. These days, it seems that question four is the most powerful one. In this case, sitting in it felt rich and transforming.

I haven’t done The Work in a structured way for a while, and with a facilitator, so it feels good to come back to it. It feels more fresh and real, and something has shifted. (Especially really enjoying question four and what comes up there.)

Why I don’t drink coffee

Some say that caffeine gives us energy, so why don’t I drink coffee or tea?

DON’T LIKE THE EFFECTS

The simple answer is that I don’t like the effects of coffee. I enjoy the taste well enough, especially when it’s good quality and well made. But I don’t like the effects in my system, I don’t like how it feels. And it also doesn’t really give me anything I want. So it’s an easy choice. I’d rather drink something else.

STIMULANT

More to the point, caffeine is a stimulant. It makes me feel wired, and my mind can use this wiredness to ignore my body’s signals to slow down and rest. That’s not good for any of us. It can lead us to ignore these signals for too long, which can lead to burnout and crashes. I have even less wiggle room here since I have Chronic Fatigue Syndrome (CFS). If I ignore my body’s signals, I’ll crash quickly.

CAN INTERPRET WIREDNESS AS ENERGY OR ANXIETY

So what about the meme above? Why do some experience the effect of caffeine as anxiety?

I assume it’s because our mind notices the effects of the stimulant, and then interprets it as energy or anxiety. If we are not so conscious of it as a stimulant, we may call it something else.

WHAT DO I DRINK INSTEAD?

What do I drink instead? In, daily life, I typically drink herbal or spice infusions.

And if I want something that actually gives me (deep) energy, I’ll drink bone broth. (Ideally made from beef bones cooked for a couple of days in a pressure cooker or slow cooker.)

REAL ENERGY HELPS MY SYSTEM RELAX

Real energy calms down my system, and it gives me better and deeper sleep. I assume this is because my system has the energy to do what it needs, so it can relax. (If my energy is depleted, I can feel wired and have trouble sleeping.)

The quickest way for me to bring up my energy is through energizing with Vortex Healing. And this has shown me, many times, the difference between feeling depleted and wired, and the deeper relaxation that comes with real energy.

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How will future generations look at CFS?

How will future generations look at Chronic Fatigue Syndrome (CFS/ME)?

Of course, nobody knows. But it’s possible to make some educated guesses.

CFS IN HISTORY

It’s not much of a stretch to assume that CFS will go down in history as yet another illness that the medical profession – and society as a whole – didn’t take seriously enough.

Anyone with a more direct connection with CFS knows it’s a serious, debilitating, and very real illness, and one that often comes after a viral infection.

WHY IS IT NOT TAKEN MORE SERIOUSLY?

So why has the medical profession not taken it more seriously? Why doesn’t society take it more seriously?

There are several likely answers:

It impacts more women than men, and “women’s diseases” have traditionally not been taken as seriously as the diseases that impact men.

We don’t have an easy method for detecting CFS. It’s an exclusion diagnosis. We need to exclude a lot of other diseases it could be and are then left with CFS.

We don’t have a clear understanding of the mechanisms behind it. It’s easy for some doctors to assume it’s psychological. Or it’s something they don’t want to deal with because it’s difficult to diagnose and they can’t do much about it.

It may not be so attractive to most researchers. They may not know where to start. And even if they did find some answers, there hasn’t been much money in it. (That may change now that so many have some form of long covid.)

Those with CFS are typically in no position to speak up in a strong or well-organized way. We don’t have the energy or resources.

CFS AND COVID

We knew that the covid-pandemic likely would lead to a lot more people with CFS, and that has turned out to be the case. The media is giving it more attention. And I assume there is more research now than before the pandemic, although the research is likely focused specifically on long-covid.

Long-covid is a post-viral syndrome and a form of CFS. It can take different forms, as can CFS in general. It often comes with fatigue, post-exertion malaise (PEM), and brain fog, as does CFS in general. And it does sometimes have characteristics more unique to covid, like lung damage. (In my experience, it impacted my memory and gave me Teflon brain, which CFS from the EB virus didn’t do in the same way.)

MECHANISMS

What is the mechanism behind CFS?

Nobody really knows. We may find one clear mechanism, and even then, I assume we’ll find a lot of factors that play a role. (In my case, I assume the trigger may have been a combination of genetics, stress, mold, and the Epstein-Barr virus. The second time I got strong CFS, it was following pneumonia.)

SOLUTIONS

What will the solution be?

I have no idea. We may eventually find a medical treatment that works wonders. In the meantime, the best approach seems to be a combination of nutrition, herbs, rest, and cognitive and behavioral strategies to deal with the condition in the best way possible.

Chronic fatigue and what people see and don’t see

Yesterday, I met with two friends from art school that I haven’t seen for many years.

From their perspective, and if they didn’t know better, they met someone who looked and seemed well and engaged. And it’s easy for them to extrapolate and assume that’s how I am all or most of the time.

The reality is quite different. I rested for days before this meeting. The meeting was brief enough so I was able to stay engaged most of the time. (In groups, I also have a strategy of allowing others to talk while I rest.) And I am spending today in bed.

This is one of the classics for people with Chronic Fatigue Syndrome (CFS/ME). We are often able to mobilize for short periods. (Especially if we can plan ahead and schedule rest before, during, and after.) And if someone only knows us through those glimpses, it’s easy for them to assume we are doing pretty well while the bigger picture is quite different.

I don’t always say anything about this to people. But if someone is a little more central to my life, I tell them what’s going on: I am able to mobilize now and then, especially if I can plan ahead and rest before, during, and after. It does cost, and it’s often worth it.

The same goes for what I write here, in its own way. I am only able to write now and then, often for a few minutes early in the day. Most posts are written in a few minutes. And I chose topics that are the easiest for me. Topics I know well from my own experience and where I don’t need to look up any background information.

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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