CFS and bodymind

 

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

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

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

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

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

My approach to managing and healing from CFS includes:

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

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

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

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

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

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

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

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

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

Chronic fatigue as a modern form of monasticism

 

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

I can see how that fits.

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

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

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

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

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

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

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

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

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CFS and how my body puts functions on rotation

 

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

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

For instance:

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

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

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

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

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

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

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

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

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CFS, Lyme and personality changes

 

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

In my case they include:

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

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

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

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

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

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

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

Chronic fatigue (CFS) means…..

 

I am also reminded of how the chronic fatigue (CFS) label really says “we don’t know what’s going on”. And for dedicated doctors, it says “we are going to find out what’s really going on with you”. (For other doctors, it says “I can’t help you”.) In my case, I was lucky to finally find a doctor who could diagnose it and help with treatment.

From a previous post.

The CFS label is a temporary and somewhat lazy label. It can be helpful as a label that includes a typical cluster of symptoms, and it does give some doctors an idea of what to look for.

I have certainly had my share of doctors who half-heartedly asked some questions and did a few tests, and for whom the label really meant “I can’t help you”. And now finally, one for whom the label meant “I can help you. I won’t give up until I figure out what’s going on with you. I have found several reasons for your fatigue and brain fog, and it can be treated”.

Chronic fatigue and spirituality

 

I have wondered about CFS and spirituality. It does seem that more people with CFS are into spirituality than average. It may be that people with CFS get into spirituality as a way to deal with it. Or that there is another connection. For instance, it’s possible that both CFS and getting into spirituality has to do with a wish to find refuge or escape from this world. That may be part of it for me as well. (And that doesn’t mean that spirituality can be reduced to wishing to finding refuge or escaping.)

From a previous post.

In my case, I got CFS at age 15 a few months after mononucleosis. There was a sense of the world becoming very far away, my head felt filled with cotton, I was severely fatigued, my brain didn’t work properly. (I didn’t think of it as CFS then, but looking back the label fits.) After about a year, there was a spontaneous opening or awakening where everything without exception was revealed as God, Spirit, consciousness, love. And that opening never really closed down. The CFS continued, although I learned to regulate it more following high school, and it was compensation for by my passion for what I did.

I then got severe CFS again some years ago, and a few months after pneumonia. (I was bedridden for 3 weeks and terribly sick. My doctor called it “walking pneumonia”! I normally don’t like to take medicines, but at that time I strongly felt I needed it, but my doctor didn’t agree.)

In both of those phases of my life, I felt quite lost and off track. Initially, combined with or because of typical teenage angst. More recently because I found myself in a situation that didn’t feel right at all, and it felt difficult to get out of it. (Getting out of it in a real way meant I had to go against or confront some very core beliefs and fears.)

So it may be that CFS is connected with feeling off track. Or seeking refuge from a difficult situation or world. Or there may be personality characteristics – such as being highly sensitivie – that makes us both interested in spirituality and susceptible to CFS. Or that may just be the mind trying to make sense of things.

What’s more real is that CFS and other illnesses does bring up our fears, beliefs, and identifications, and we can look at these. It tends to bring up what’s unfelt, unloved, and unquestioned in us, with an invitation to us to feel it, find love for it, and question the stories behind or associated with it.

Chronic Fatigue & Lyme Update

 

I just spent two weeks in Poland and went to the Lyme/CFS clinic almost daily. It’s good to get some answers, and yet the treatments this time had less effect than last summer. I think it is because the treatment mainly focused on repairing the mitochondria, while what I more acutely need is to focus on active infections.

Here are some highlights:

Lab Reports February 2016

Active Epstein-Barr, Lyme, and two pneumonia bacteria. (I am not surprised about this. For instance, my Lyme symptoms return when I am off Artemisinin for two days a week.)

Epstein-Barr (these should be less than 2)

EBV LTT antigen 1 ug/ml  6.6

EBV LTT antigen 0,5 ug/ml  2.9

Borrelia (Lyme) (these should be less than 2)

afzelli 5.5

sensu stricto 3.1

garini 5.4

OspC 3.7

Pneumonia (these levels have increased since July 2015, which matches my experience)

Mycoplasma pneumoniae IgG  118 (has increased, was 96 in July 2015)

Chlamydia pneumoniae IgG  159 (has increased, was 118 in July 2015)

OK vitamin D3 level.

Vit. 25-OH D3 73,4 ng/ml
Not active candida.
Candida albicans IgA    < 10 U/ml
Candida albicans IgM    < 10 U/ml
OK B12 level? This was very low (127) last summer and I have taken sublingual B12 (methylcobalamin) since then. The reason my body doesn’t absorb B12 through the intestines may be parasites.

Methylmalonic acid  17 ug/l   normal range 9-32 (an indirect indicator for B12)

Magnesium are at normal levels. Selenium is at 135 ug/l (normal is 50-120) so it’s a little high, and the symptoms of high selenium fits with what I have. (It seems that just about all of the positive findings have similar symptoms, and fit with mine….!)

It’s also possible that I have heavy metals in my body (increasing the load) and parasites.

A “Food Detective” test found that my body reacts strongly to almonds and cow’s milk, and mildly to wheat, rye, oats, mushrooms, and yeast. (None of these are surprising to me. I have known about my reaction to sugar, what, and diary, and also some other grains and almonds.) It may be even more important for me to stay away from these foods since my body mobilizes against them, which means it will have fewer resources to take care of the real threats (intracellular EBV, Lyme, pneumonia).

Lab Reports from June 2015

EBV IgG 284 U/ml (Epstein-Barr antibodies, over 20 is positive)

C3A / C4A serum levels. These were low and suggested Sjøgren’s disease. Later results were negative for Sjøgren’s.

C3A serum level 0.27 (low, o.58 – 1.90 is normal range)

C4A serum level 0.37 (low, 0.57 – 1.68 is normal range)

VEGF 0.86 (within normal range)

Glucose 6 phosphate dehydrogenase 10.2 U/g Hb (normal range 7.20 – 10.50. This is a metabolic pathway providing energy to cells.)

ADH antidiurethic hormone 5.0 ng/l (normal is below 8)

Epstein-Barr

Antibodies p/EBV IgM 0.25 S/CO (negative, below 0.50 is negative)

Antibodies p/EBV IgG 59.16 S/CO (postive, over 1.00 is positive)

Vitamin 25-OH D3 37.0 ng/ml (normal/optimal range is 30-50)

Vitamin B12 127.4 pg/ml (very low, should be 200-800 range – or really 400-800 from what I read other places)

Borrelia IgM Western-Blot – negative, no reaction. (This is likely a false negative based on symptoms and other tests.)

CD3/CD8 (T-cell co-receptors)

% CD3+CD4+  13.3 (low, normal range is 19.0-38.9)

CD3+CD4+ 242  (low, normal range is 300-1200)

CD4/CD8 3.54 (high, normal range is 0.80-2.50)

CD57

% CD3+CD8+ 14.6 (low, normal range is 19.0-38.9)

CD3+CD8+ 266 (low, normal range is 300-1200)

Cortisol 472.3 nmol/l (normal range is 171-536)

Pneumonia

Antibodies p/Mycolasma pneumoniae IgA  negative

Antibodies p/Mycoplasma pneumoniae IgG 95.7 RU/ml  (over 20 is positive)

Antibodies p/Chlamydia pneumoniae IgG  118.39 RU/ml  (over 22 is positive)

Antibodies p/Chlamydia pneumoniae IgA  negative

Minerals

Sodium  146 mmol/l (little high, normal range is 136-145)

Potassium 3.97 mmpl/l (normal range is 3.5-5.1)

Chloride 109 mml/l (little high, normal range is 98-107)

ALT 24.1 U/l (normal is above 4 – not sure what this is)

AST 25.4 U/l (normal is below 39 – not sure what this is)

Hormones

TSH 2.480 ulU/ml (normal range is 0.270-4.200 – thyroid stimulating hormone)

Free thyroxine FT4  17.89 pmol/l (normal range is 12.00-22.00 – thyroid)

Triidothyrine FT3  5.68 pmol/l (normal range is 3.10-6.80 – thyroid)

Testosteron 22.36 nmol/l (normal range is 9.90-27.80)

 

Lab results from Ahus (hospital in Norway, February 2016)

Cytomegalovirus

CMV IgG Negative

CMV IgM Negative

Epstein-Barr Virus

EBV EBNA-IgG Negative

EBV VCA-IgG  345 (The Norwegian doctor says this suggest past infection. When I look at it, I see a higher number than the results June 2015 which suggests active infection.) 

EBV VCA-IgM Negative

Hepatitis

Hepatitis B virus core antigens  Negative

Hepatitis B virus surface antigens  Negative

Hepatitis C virus antigens Negative

Treatment February 2016

While at the clinic this time, I received i.v. to repair mitochondria and remove heavy metals from my body. I also did two hyperthermia treatments.

What I was prescribed while I was there:

Multimessenger (for immune system). Consists of: Colostrum/ betainehydrochlorid / Larix occidentalis/ Green Tea extract/ Punica granatum/ astragalus membranaceus/ Lentinula edodes/ Grofila Frondosa
Artemisinin 500mg x 2/day
Black cumin oil 5ml away from food – black seed oil “Ethiopia” from El-Hawag
Cholestyremine (to remove heavy metals)
Plaquenil (for parasites + possible Sjogren’s syndrome)
LDN 4.5mg
Vit D3
Probiotics

As I suspected, my doctor also recommends I go back to using antibiotics to take care of the EPV, Lyme, and pneumonia.

I also take vitamin A+K, magnesium, and eleuthero (Siberian ginseng for strength) and echinacea (for immune function).

What I am prescribed from my herbalist:

Echinacea 5g

Eleuthero to max comfort

Kapi kachu to max comfort

Methyl Folate work up to 5g

Weakened system and accumulation

Here is what I suspect happened:

I had mononucleosis at 14 or 15 followed by an initial CFS a few months later. I was sick most of high school.

I did better after high school, as long as I was careful about what I ate and to get rest when I needed.

I had a severe pneumonia 6-7 years ago which never left my system, and I had a strong return of the CFS a few months later.

I got Lyme May of 2015 (numb arms, legs, face, tongue, poor memory, severe fatigue).

It seems that each of these – the Epstein-Barr, pneumonia, and Lyme stayed in and increased the load on my system. The two periods of CFS both came a few months after a serious infection (mononucleosis and pneumonia). It’s likely that my body was initially weakened by the EPB and was then less able to fight off the rest.

It’s also possible that my system was weakened by feeling lost and off track, which I did both at age 14-15, and 6-7 years ago. During times when I have experienced a strong sense of purpose and being on track, I tend to do better.

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A few words about sensitivity

 

Since childhood, I have been quite sensitive to a range of stimuli, especially sounds (noise, eating sounds, paper rustling), certain foods (sugar, dairy), chemicals, heat, physical exertion, and more.

I notice that my sensitivity is related to how well I feel in general. When I feel stronger and/or feel good about my life, I tend to be less sensitive. When I feel more fatigued or vulnerable, and I am less happy about my life, I become more sensitive.

Also, I assume these sensitivities are a type of “allergic” reaction. It’s my system reacting strongly to stimuli that in themselves are relatively harmless. My system seems to respond as if it’s a life and death situation, when it really isn’t.

That’s why retraining my system’s response seems important. How do I retrain or reprogram the stimuli-response reaction? How do I help my system respond with calmness to the stimuli that previously have triggered a strong reaction? One way is to feel the response in my body, and rest with it. As I rest with it, I am signaling to my system that it’s OK. There is no life-and-death situation here. It’s OK to relax. It’s OK to be OK with it.

Joey Lott writes about this, and it’s also an inherent part of Natural Rest and the Living Inquiries. In Natural Rest, I notice what’s here and allow it as is. I may even say “I love you, stay as long as you like”. In the Living Inquiries, I look at images and words, and feel sensations, which invites the “velcro” to release. (Sensations that seems “stuck on” images and words, lending them charge, and a sense of reality and solidity.) Both signal to my system that it’s OK. The stimuli is OK, whether it’s a sound, image, or sensation. It’s not life threatening. It’s OK for my system to respond in a relaxed way. It’s even OK to find love for it.

Said another way, when there is velcro (or a belief, or identification, or a psychological knot), the stimuli may trigger a strong and unpleasant reaction. It’s an over reaction, in a conventional sense, although the reaction is appropriate to the underlying belief, identification, velcro, or trauma. And this looks like sensitivity.

There is a sound. The sound itself is harmless. My system responds strongly, with a fight or flight or freeze response. It’s alarmed. It reacts that way due to a belief (or identification, velcro, trauma). And that stimuli-response pathway can be changed. My system can learn to respond in a more relaxed way, through inquiry, or Natural Rest, or just feeling the sensations of the reactions and resting with these sensations. In each case, I am showing my system that it’s OK. It’s OK to respond in a relaxed way. There is no life-and-death situation here.

Another way to work with this is Tension & Trauma Release Exercises (TRE), allowing the body to release tension and trauma through it’s natural and inherent trembling mechanism. (Spontaneous trembling, shaking, rocking, stretching.)

A couple of notes:

I included physical exertion above. I suspect that chronic fatigue fits into this pattern of stimuli followed by an exaggerated response. The stimuli is physical exertion, and the response is fatigue. It may be a type of freeze response. This is not the whole picture of CFS, but it may be a part of it for many. (I suspect there is a great deal of individual variation here, and another part of the picture is physical problems such as mineral and vitamin deficiencies, viruses, auto-immune illnesses and more.)

Similarly, fatigue itself may be the stimuli, and the system responds with increased fatigue. This can also be retrained, in the way described above. It’s at least worth a try. And inquiry can be invaluable in this process.

Is X a threat? The physical exertion? The fatigue? The brain fog? These sensations I label in that way?

Can I find X? Fatigue? Exertion? Brain fog? Someone who has these?

Is there a command to X? To escape a situation? For the fatigue to go away? For the brain fog to go away?

I am intentionally avoided using the term “nervous system” above. It’s obviously important in this context, but there is clearly a lot more going on than just the nervous system. Our whole body-mind is included.

One way the nervous system plays a role, is what happens when the sympathetic nervous system (flight/fight/freeze) is chronically activated. This leads to the parasympathetic part of the nervous system being less active. And this, in turn, leads to diminished immune function, digestion, and more, which in turn can lead to a range of health problems.  Teaching the nervous system to relax – in general and when faced with certain stimuli – helps our overall health. It makes the body better able to heal itself.

Health update

 

As mentioned in an earlier post, I went to a doctor in Poland this summer. He is a specialist in Lyme, and – as it turns out – also in chronic fatigue (CFS). He sent my blood off to a number of labs, and I received the results in August. The results show a number of things that all contribute to fatigue and brain fog (including poor executive functions and shaky/raw emotions).

These include: Very low B12 levels (127), epstein-barr virus (mononucleosis, often associated with CFS), two pneumonia viruses, an auto-immune disease, and Lyme.

It’s a relief to finally have more specific information about what’s been going on with me. Now, I can say it’s the things listed above, instead of using the fuzzy term CFS.

I don’t know the exact sequence of how I got these things, but here is my best guess:

When I was 14 or 15, I had mononucleosis. Some months later, I got CFS for the first time and this lasted 2-4 years quite severely. I felt I never recovered from this, and that may be true if the Epstein-Barr virus is still in my system (intracellular). After this, in my twenties and early thirties, I was able to function reasonably well as long as I could organize my own schedule and include rest when I needed it. (I was unable to follow a regular work schedule, and fortunately didn’t have to.)

Seven or eight years ago, I had pneumonia, and I never felt I got over this too. It now turns out I didn’t. The viruses are still there (also intracellular). This pneumonia preceded (and may have led to?) my second severe CFS episode some months later, much more severe than the initial one in my teens.

I assume the B12 deficiency developed over several years. It may have made me more susceptible to the pneumonia and Lyme by weakening my system so I couldn’t fight them off. It’s also possible that some of these led or contributed to (?) the B12 deficiency (not sure if that’s how it works).

It’s also possible that I have had Lyme for far longer than just this summer. Several people have suggested it, although I didn’t have any tests until now.

My doctor thinks that these are all treatable, so I am optimistic. I also know how important it is to help my system relax and strengthen in general, through diet, sleep, nourishing relationships and activities, moderate physical activity, helping my nervous system release tension and relax, doing inquiry on stressful beliefs/identities/apparent threats, and more.

Any prayers for my full recovery are welcome.

My experience with Lyme in Norway

 

IMG_1597

In mid-May, I noticed a numbness in hands, feet, and face, and weakness in my hands. Two weeks later, I discovered a red ring on the underside of my arm, near the armpit. I went to a doctor who thought it could be Lyme disease and gave me a five day antibiotics treatment (this was in the US). The numbness went away after one day.

Two weeks later, in Norway, the symptoms returned and were much stronger. The numbness was back in my hands, feet, and face, and now also tongue and mouth (and a bit later lower arms), along with stiff neck, very strong brain fog and grogginess, and fatigue. (The initial extremely strong fatigue and brain fog could be related to jet lag, and I also have a baseline fatigue and brain fog from the CFS. Although the unusually strong grogginess remains now even after the jetlag is gone.) I also have weak grip (things slip out of my hands), and when I get up after resting I move and feel like an old man.

I had gathered that Lyme is a controversial topic in Norway. The official position seems to be that the infection itself doesn’t last very long. (If the symptoms are longer lasting, it’s something else.) Doctors who treat this “non-existing” disease in Norway risk loosing their license, and one did even last year.

When I called my regular doctor, I got an appointment the same day by the receptionist. She called back within an hour and said that when the doctor had heard why I wanted to see him, he cancelled the appointment and said I could possibly get an appointment two months later. A bright spot: Some days later, I was able to get an appointment. My doctor looked at the red ring, did some neurological tests, and agreed that Lyme is a probable diagnosis. He gave me a relatively mild two-week antibiotics treatment.

From what I understand, it’s important to treat it more thoroughly, especially early in the process, to prevent problems later on. I got the names of some doctors who may be more knowledgeable about Lyme, and contacted several of them. The pattern was the same with all of them: When they heard why I wanted to see them, they either didn’t respond or said they possibly had an appointment about two months in the future (and to call them then to set it up).

The last one I talked with was initially friendly and welcoming, and when heard why I called responded “that’s a controversial topic in Norway, I need to go now and will call you back later, goodbye”. And then didn’t respond to my later attempts at contacting him.

The essence is that it seems impossible to get quality treatment for Lyme disease in Norway. That’s why most Norwegians with Lyme disease go to Germany or Poland to see doctors there.

Several things come up for me around this:

I had expected Norwegian doctors to at least have the integrity to tell me they can’t treat me since they may loose their license if they do. Instead, they either cancel my appointment, don’t respond, or tell me to call back in two months. (Which seems irresponsible considering my symptoms,)

Since there is disagreement about Lyme internationally, I would expect the Norwegian doctors and government to take a precautionary approach. To treat any possible or likely Lyme disease thoroughly (initial four or six week antibiotics treatment + anti-cyst medication). Instead, they chose to not treat it, avoid patients who may have it, or they treat it in a minimalistic way that may make it worse in the long run.

I don’t know the politics around this, but the official policy on Lyme in Norway does seem to be influenced by politics, and perhaps arrogance and wounded egos.

I should mention that I am among the more cautious when it comes to using medication and antibiotics (also to reduce the risk of creating more antibiotic resistant strains), but in this case, the risks of leaving it untreated or wrongly treated seem serious enough so I chose to go the medical and precautionary route.

This also triggers the victim identity in me, since it comes on top of my existing struggles with CFS, and it happened just as I left the US (where I could have received proper treatment) for Norway (where I can’t).

Update: It seems there are three possibilities when people are infected by Lyme. (a) It lasts for a relatively short period of time, and then is gone, perhaps due to antibiotics treatment. (b) It can become longer lasting, due to continued infection. (c) There may be an auto-immune response which creates problems. I am sure there are other possibilities too. I haven’t read much about it yet.

Update 2, mid-July 2015: I went to Poland to see a Lyme specialist there. It turns out that he also specializes in CFS. It’s possible that there is a weakness in my system that makes me more susceptible to both CFS and Lyme. He took a good number of tests to get an idea of what’s going on, and what the best course of treatment may be. One of the main questions is why my mitochondria seem compromised, and unable to produce as much energy as they normally would. I feel a little better, partly from what he gave me, and partly from feeling I am in good hands and that someone actually takes my case seriously and may be able to do something about it.

Update 3, July 16, 2015: I had an appointment with my regular doctor in Norway (about referal to nevrologist for CFS), and he interrupted me and changed the topic as soon as I tried to give him an update about the Lyme. I still have numbness in arms, legs, and face, a stiff neck, strong headache, very strong grogginess, memory problems, diarrhea, and more, so it seems irresponsible by him to dismiss it – to the point of not even wanting to hear about it. (The symptoms are stronger some days than other, and obviously quite debilitating.)

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Tiredness

 

Tiredness is very interesting.

It can be physiological, often from lack of sleep. It can have a significant mind component. And perhaps quite commonly, there is some of each.

In inquiry sessions – both as client and facilitator – I notice that an almost overwhelming tiredness can set in, often when the client is looking at something with a lot of velcro and seemingly threatening. When tiredness is brought consciously into the session, the experience of it can shift, and it also tends to mysteriously vanish after the apparently threatening images, words, and sensations have been more closely looked at. It may be that this tiredness is a form of protection.

In life, it may be similar. I wonder if not a part of chronic fatigue is the same impulse to protect. The tiredness is a form of protection, and if so comes from innocence, deep caring, and worried love. Tiredness protects me from being out there in the world, with all its apparent dangers, risks, disappointments, and more. (And that doesn’t mean that there isn’t a very real physiological component to chronic fatigue, and perhaps even in the cause of chronic fatigue.)

Some ways to explore tiredness:

Living Inquiries. 

Rest with the tiredness. Notice. Allow.

Feel the sensations. See how it is to be curious about them. Feel the sensations as sensations. (As much as possible. This may be much easier after doing the following inquiry.)

Inquire into the sensations, and any associated images and words. Is it a threat? Is it tiredness? Is it someone who is tired?

Kindness.

I love you.

I am sorry. Please forgive me. I love you. (Ho’oponopono.)

Holding satsang with.

You are welcome here.

Thank you for protecting me. Thank you for your love for me.

What would satisfy you forever?

What are you really?

Dialogue/mining.

How does X relate to you? What advice do you have for him/her?

What does it mean? What would is say if it could speak?

What does it need from you?

In my experience, the kindness can be very helpful in reorienting and relate to it differently, and the dialog can do the same. What really helps is resting with what’s here, and especially feeling the sensations of tiredness, and looking at the associated images and words. When the velcro is loosened, it’s much easier to feel the sensations as sensations, and the associated images and words are recognized as images and words.

The sense of tiredness may get thinner or lifts. Or there is still a more physiological tiredness here (from lack of sleep usually) and it’s OK, it doesn’t seem like a problem, and it doesn’t have as many overlays of images and words.

This is similar to how physical pain can be explored.

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The gifts of fatigue

 

It’s easy to see chronic fatigue (CFS) as a disaster.

That’s how we (most of us) are trained to see significant health problems. And if that’s all we see, and we hold it as true and real, that’s how we create suffering for ourselves.

And yet, as with just about anything else, there are also gifts there, and it’s good to acknowledge these. It helps balance the picture in my mind, and how I relate to it and my life.

So what are some of the genuine gifts in CFS for me?

When I thought of fatigue, the first that came up for me is I love you. (To the fatigue and associated symptoms.) This shows that something has shifted in me since I first got it.

I learned to befriend ordinary rest. I used to be driven to always do something productive (studies, work, photography, meditation). I didn’t want to “waste” any time. From the fatigue, I learned the value of rest.

I learned to find peace with being dependent on others. I used to be strongly invested in being independent and take care of my own life. And I learned the gifts in being dependent on others. In receiving. In letting people give. We are always dependent on others, in innumerable ways. And I found the gifts in being dependent in a more obvious way too.

I learned to find kindness for my very human experience, even when my human side didn’t like it at all. I learned the value and relief in finding peace with and love for what’s here. And I am still learning.

I had to face beliefs about health, value, roles in society, success, failure, and more. I have worked on and looked at many of these, although there are some left.

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TRE and fatigue

 

There may be many reasons for chronic fatigue (or not), and many ways through it.

For me, Tension and Trauma Release Exercises (TRE) is one.

I assume that chronic tension binds energy that otherwise could be used for healing and living life. And it may also block energy flow, in a more eastern view, with a similar result.

At the very least, it certainly takes a lot of energy to hold tension in the body. (As it does to hold beliefs, identifications, and velcro. This is what creates the mental and physical tension, which is why natural rest and inquiry is apart of this exploration for me. I want to go to the root of what’s happening, and TRE alone doesn’t do that.)

When I do TRE, I feel relaxed, whole, and more myself. And as I do it over time, chunks of tension soften and gradually release, starting from the legs and hips and moving up the body.

For me, now, the main tension sits in my shoulders, and that’s also where – in my throat – I notice a consistent body contraction. My hip area and lower back feels much more soft and open, and it seems that it’s largely due to the TRE.

Need for rest

 

I have experienced an unusual need for rest over the last few years, following many years of being very active.

This shift is connected with what some would label chronic fatigue and a dark night of the soul. And, yes, I realize that those labels can be helpful for communication and navigating what’s happening, and they may also be limiting and stressful if taken as too solid and real.

Why this need for rest? There may be several answers.

(a) The body & mind is exhausted and needs rest to recover. This exhaustion may be due to previous years of high energies, both in form of kundalini and in a more everyday sense. And also living with and relating to what was unloved and unexamined in me…. being stressed by it, setting it aside, wrestling with it.

(b) It’s a time for healing. A time for being with myself, for loving and examining the unloved and unexamined. It’s a retreat. It’s nature’s way of ensuring I get time and opportunity to do this, since I didn’t chose retreat on my own.

(c) It’s an invitation for natural rest. For allowing what’s here as it is, allowing this field of experience as it is here & now. And finding myself as that which already allows it, and is it, this field of experience as it is in immediacy. Perhaps first in through rest in a conventional sense, and then living this also in activity.

(d) It may also be related to identifications. (i) As mentioned above, identifications themselves can be tiring. They can lead to stress, unease, struggle and more. (ii) Also, there may be a sense that rest – and perhaps fatigue, isolation – is safer than being active and exposed in the world. Rest becomes a form of protection. An attempt to protect the imagined self. (iii) There may also be beliefs about the fatigue itself and what it means, which can solidify or amplify the sense of fatigue and need for rest.

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Chronic fatigue and TRE

 

I have chronic fatigue (whatever that is) and have been doing TRE (Tension & Trauma Release Exercises) for a while.

Many have reported good success in healing from fatigue using TRE, and it’s perhaps not so surprising.

Neurogenic tremors allow the body to release tension and trauma (physically and emotionally), and this – in turn – releases and makes available the energy and resources previously tied up in maintaining the tension and trauma.

I have found other things helpful too:

Inquiry into my thoughts about the symptoms (labels, what they mean) and any stressful stories, including the most basic ones.

Loving kindness. Meeting what’s here – including the symptoms and my reactions to it – with love.

Gratitude. All-inclusive gratitude practice. I am grateful for…… and include anything in your life, what’s easy to feel grateful for and what it’s more challenging to find gratitude for.

Natural rest. Allowing what’s here – this field of experience – as it is. Noticing it’s already allowed as it is. Spending time with this, now and then through the day.

Feeling sensations as sensations, especially any sensations associated with the fatigue. (The sensations interpreted as fatigue, brain fog, resistance, fear, sadness etc.) This can be made easier through inquiry into words and images associated with these sensations.

Following my guidance and my heart. Inquiring into the way my mind stops itself from living this. Following my guidance even if there is fear. (Feeling off track can be draining.)

A good – and not very strict – diet, consisting mainly of simple and ordinary foods, similar to that our ancestors would have eaten. (Not much processed food, or sugar, dairy or wheat.) Drinking plenty of water. (Mostly in the form of herbal and spice teas, enough to keep the urine light colored or clear.)

Spending time in nature. Find your spot. Go for walks. Sit and rest. Soak it in. Allow nature to gently work on you. Walk barefoot.

Strength training, although not in excess.

Herbs. (Eleuthero, rhodiola, chulen, Stangelands Urtete etc.)

Engaging in nourishing activities and relationships. Dropping, as far as possible, draining activities and social engagement.

Welcome fogginess

 

I still have some symptoms thoughts label fogginess, fatigue, poor executive functions and so on, and another thought ways it’s part of what’s left of the chronic fatigue.

So I can hold satsang with these parts of me. For instance, when I notice brain fog…..

You are welcome here.

Thank you for protecting me. Thank you for your devotion for me. Thank you for your love for me.

How would you like me to be with you?

What would satisfy you forever?

What are you really?

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Executive functions

 

There is a sense that a part of my mind/brain has not yet “clicked into place”. These used to be among my strengths, and then took a vacation during the chronic fatigue. Here are some as they show up for me:

Verbal fluency. Planning and decision making. Attention. Working memory. Learning/writing. Inhibition of impulses. Intentionally relating to emotions.

Today, I realize that these are all part of what’s called executive functions in psychology, and they all may well be related to the same area(s) of the brain.

It’s a relief to see this, even if it’s perhaps not helpful in a direct or practical sense. My herbalist tells me that this is typically among the last to return in the recovery process from chronic fatigue.

Chronic fatigue

 

Some of the things I have found helpful for chronic fatigue syndrome (CFS):

Walks, ideally in nature, and at least once a day.

Nurturing food. Slow cooked stews. (Current one: Beef, brussel sprouts, tomatoes, carrots, potatoes, peas, barley, beef stock.) Oatmeal for breakfast. (Steel cut with coconut flakes, raisins, sunflower seeds, soaked overnight, cooked with apple or banana.) Beef broth. Local fruits, berries, seeds and nuts, nori flakes. I also take ginger and cloves capsules with each meal to aid digestion, and eat just enough so I don’t feel uncomfortably full.

Staying well hydrated. I tend to drink enough so my urine is pale to clear. I mostly drink herbals and spice teas (ginger, licorice, nettle, many from the Yogi tea company), and also at times – especially at winter – beef broth.

Reducing or eliminating certain foods. For me: sugar, dairy, wheat, processed foods. (Based on the effects I notice for myself.)

Nurturing body centered activities. For me, Breema, TRE, massage. (Also yoga, tai chi, chi gong etc.)

Tension and Trauma Release Exercises (TRE). These invite the natural neurogenic tremors initiated and guided by the body, allowing for a gentle, gradual and eventually deep release of tension and trauma from our body-mind system. This thaws frozen areas of the body and mind, gently releases chronically held energy, and enlivens the body and mind. From what I hear, and what I experienced myself, it seems very helpful for chronic fatigue.

Taking care of myself. Saying an honest yes or no. Being more honest and transparent with myself and others.

True Meditation. Noticing what’s here is already allowed. Adyashanti’s guided meditations have been very helpful for me.

Inviting in a more stable attention. The easiest for me is to bring attention, gently, to the sensations at the nostrils as the natural (unmanipulated) breath goes in and out.

Identifying and inquiring into stressful thoughts about the fatigue and anything else in my life, using The Work.

Identifying and welcoming deficient selves, noticing they are not what I fundamentally am.

Welcoming what’s here – fears, discomfort, fatigue etc.

You are welcome here. Thank you for protecting me. Thank you for your love.

Herbs, vitamins and minerals. For me, vitamin D, magnesium, siberian ginseng (deep energy), echinacea (immune function), huperzine-a, rhodiola (mental clarity, quick energy), probiotics, and more recently Hanna Kroeger’s B.E. Kit (for chronic fatigue) and Tibetan Chulen (deep, full, soft energy). Adaptogens such as siberian ginseng and rhodiola help build energy and improves immune function.

Supporting deep, restful sleep. For me, with small doses of melatonin. Also, rest and take naps during the day, the more the better.

Nurture nurturing relationships – with my mind, body, others, life. Finding and connecting with understanding, loving and supportive friends.

Nurture nurturing and enlivening activities. For me, photography, being in nature, Breema, TRE, inquiry, reading, learning, being of service to myself and others.

Nurture a nurturing environment. In my case, beautiful, simple, peaceful, near/in nature, wood fire.

Engaging in activities that are fun, rewarding, meaningful, that spark passion and joy.

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Fatigue as protection and love

 

In my session with Pamela Wilson, fatigue, numbness (of the heart and brain) and brain fog came up.

You are welcome here. Thank you for protecting me. Thank you for your love for me.

In what way is it innocently protecting me? Fatigue keeps me from being out there in the world, from meeting other people, from risking being hurt. And numbness and brain fog does the same.

TRE, cf and dark night

 

I am still in a quite intense process of “bubbles” of confusion surfacing to be seen, felt and loved, and find liberation from their suffering. It seems to happen every other day or so, and usually last for about half a day. It’s a natural process, and it’s beautiful in it’s own way, although painful too when it’s resisted.

This isn’t very important, but I had a curiosity surfacing of how this relates to neurogenic tremors (TRE), chronic fatigue, and the dark night of the soul, all of which are visitors right now.

The dark night of the soul happens after an initial awakening, and it allows our confused parts to surface to find clarity and liberation from their suffering. It’s a cleansing and realignment process. Some of my human parts were especially wounded from beliefs, and now surface to heal, align more with reality, and mature within more clarity.

Chronic fatigue allows these confused and suffering beings to surface to find clarity, as there is less energy available to push them away or set them aside. The usual filters are not there.

TRE – neurogenic tremors – joins this process. It allows a natural release of old tension and trauma stored in the body, guided by the natural intelligence of the body.

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