Amygdala Retraining Diary III by Cort Johnson

09/06/08 – Finding the Sweet Spot

Another interesting couple of weeks. An emergency dental problem drove me out of the heat of Las Vegas and into better conditions in San Diego. I think I’m starting to find ‘the sweet spot’ – a feeling of relaxation and health that I can return to. I had a nice trip down in the car. I could feel the turmoil in my body rise and I was able to consistently turn it off and settle into a nice comfort zone. Once I got to San Diego I started my vegetable garden again – with predictable results – but have worked myself out of that and am back again – and getting back into what I call the ‘sweet spot.’

I believe that there’s a real movement problem – i.e. an inability to efficiently coordinate movement – in CFS. But lately I’ve been moving well – efficiently – cleanly and in a relaxed fashion. If you’ve read this blog you know that my experience of CFS is associated with increased breathing, stiffened muscles, etc. and this state if particularly with movement. When I’m in this state it feels like my torso is lifted upwards, my shoulders are hunched and my teeth are gritted. For many years I’ve noticed that when I walk I hold my feet in a rigid almost claw-like posture. This is all in preparation I believe to force myself through the difficulties that are sure to ensue.

Anyway I feel like I’ve been slowly been relaxing enough so that my torso is settling into my pelvis and I’m finding a real ‘sweet spot’ – place of peace in my body athat I have not felt for many years. Oddly enough getting into the sweet spot simply takes a minor adjustment – a slight postural change. I remember contorting my body in all sorts of postures trying to find that elusive feeling of well being when I first came down with CFS. This could be very significant.

It’ll be interesting to see how this goes because the AR has had mostly positive quality of life effects thus far with me – but has done nothing to help with exercise – I have seen no changes in my ability to exercise (or unfortunately my libido). I think, though, if I can really settle into this ‘sweet spot’ I think I should be able move more and more. I really think its the result of months of slowly relaxing the mind and body so that it starts to returning to a more natural state.

This takes work – doing the process – doing the meditation but over time it also works. Speaking of work I still haven’t listened to the DVDS as I promised to….

 

(09/16/08) Settling in – this has been a pretty good week. I feel like I am ‘settling in’ more and more into this mode of relaxation. When I started this process months ago I was at the mercy of the turmoil that CFS wreaks but bit by bit I have been able to slowly tamp it down. I am so much better at catching the turmoil – the stress response – in the bud than before and I have more of a ‘sweet spot’ to settle back into as it recedes. So my emotional turmoil is much less and I’m calmer and I feel better.

How much stronger I am is another question. I don’t know if I’m physically stronger. I’m probably physically stronger but not to the point where I feel I could test it with physical exercise. I did just put in 45 minutes in the garden – guaranteed trouble and trouble I got (had to get those beds in though) – the tight constricted muscles, the inability to communicate well, the irritable feelings, the anxiousness – it was all there but it wasn’t as bad.

I can’t but think that hyperarousal is a key element in this disease at least for me. My body seems to be set off by so many different factors; a thought, some interaction, some physical activity.

Each time this happens I can feel my abdomen heave up, my breathe shorten or stop and muscles constrict. Its almost as if a circuit breaker is cut continuously during the day leaving my body and mind in state of confusion. Oddly enough as I mentioned before this little process is at its peak when I’m feeling really good and the question slips in “Is this it? Am I getting well?” What turmoil that little question arouses. Indeed simply asking myself how my body is doing is all but certain to send a lightning of anxiety through my body.

One way I can tell how I’m doing is to just monitoring how fast my mind is buzzing; if its flying around I’m in my stress mode. If I look closely I can see that the muscles of my torso are tight and I’m breathing rapidly.

I’ve been kind of bedeviled by this ‘thought’ problem. Ashok notes how these negative thoughts set off our hypersensitive stress response system. I have trouble again and again finding those thoughts; I can feel the my body jack itself up – the process coming on again and again – but its been difficult to find those thoughts – they are buried deep! Sometimes I can look back – I actually look back – and can find some worrisome thought – some fear – that set it off and poof! the reaction is over- its quite astonishing.

I don’t need to do that all the time by the way. More and more often now I can find the sweet spot – a state of relaxation – that I can settle into.

Do CFS patients have more ‘bad thoughts’ than other people? I would be surprised if that was so. There are some people who have nothing good to say about anyone – and they’re healthy. What I do think is that we are effected – physiologically effected – more by negative thoughts, negative incidences etc. than normal. One study actually found this – it indicated that when exposed to negative incidences CFS patients breathing became shallower and altered – and here’s the really interesting part – it stayed that way for quite a while. It could be that CFS patients are simply sitting in or on the edge of the stress response all the time and it takes just the littlest nudge to tip them into a stress response.

There certainly may be more to it than that – but at least in my case it seems clear that that, at least, is happening.

9/28/08 — Snap, Crackle – Pop! - Another week of improvement. I am beginning to wonder if all these symptoms – the heart pounding, the constricted burning muscles, the fatigue, the disorientation, the sensitivities, even the cognitive problems – can be controlled. At times I can see them start up and then just vanish and at times I can settle back into my ‘sweet spot’.

This has taken me a long time and I have not been a good patient; in general I’ve put the time in but I haven’t gone back and redone the course and re-examined what I was doing – which is a mistake because I’ve doing many things incorrectly or at least not completely correctly. Then again I’m probably not dissimilar to many people who are working more or less full time. This thing is fairly time intensive and it’s not ‘easy’. It’s not ‘difficult’ either but it is different; this kind of inward looking is not something our culture really prepares us to do and it requires a shift, a kind of jolt away from our everyday lives that is not easy to do all the time.

I’ve been doing better. Throughout I’ve been very poor at one key part of the process – going back to a time when I was healthy and feeling those healthy, relaxed feelings rise up in my body. That has been so difficult and in fact I gave up on it altogether and just tried to generate those feelings – which helped – but which often left me somewhat tense as I was tried to force them to come. Anyway I decided to give it another try and reached back over 25 years to just before I became ill. I was actually at my peak health at that point – getting immersed in the forests of Santa Cruz, Ca – in my first time away from home. I was leery about going back there because that’s also when I fell apart – would I be dragged into the morass that that place became?

It turned out no – this time I have been able to access those healthy feelings and my being able to do so has markedly boosted my progress on the program. I think one reason I’ve been able to do this now as opposed to earlier is that I’m more settled and less anxious. I’m willing to spend several minutes quietly searching around for those memories. And in fact as I’ve done it more and more I’ve been able to slowly go deeper and deeper into that state. The first thing that happened was that my ankle region unlocked – with a pop. I think I described my feet as being kind of tense and ‘clawlike’. As soon as I reached back into those good times they relaxed and opened up. In fact my progress has been accentuated in my calves and feet – not a big deal some might say – but as I said they’ve felt kind of frozen for many years. The more I reach back the more they relax and the lighter on my feet I feel – very interesting! This tension – this fear – is definitely held in my body.

After getting a cue from Elly Brosius of the North Virginia support group I’ve also intermittently been practicing ‘gratefulness’ as well as something called ‘mindfulness meditation’. If thoughts and experiences are a key to this disease then practicing gratefulness is a great way to shut them off. As you work the gratefulness muscle you get more and more relaxed and more and more, well, grateful – an unusual emotion in our society but a very powerful one. You simply cannot be tense when you’re in a grateful state. I’m surprised at how soothing and healthful focusing on gratefulness is.

The mindfulness meditation is similar. It simply consists of being mindful of one’s surroundings and one’s self; basically transferring ones attention to things one usually ignores – the way ones big toe feels, or the pattern on a carpet or a breeze across ones face. It too seems to break the turmoil in the body. It turns out that mindfulness meditation is particularly effective at treating anxiety and has been used fruitfully in fibromyalgia apparently. If the nervous system has indeed become kind of locked into a negative pathway then both mindfulness and gratefulness is a way to carve out new pathway’s. Indeed meditation studies show that the brain actually builds pathways in new areas when one meditates.

I’ve been sleeping better for the last week – hopefully that will keep up – it’s so nice to be able to wake up relatively relaxed (if still soaking from these night sweats – the only negative side effect from the training.) Overall it’s been a better couple of weeks – during a time when I’ve been quite busy as well – and have not been doing the practice as much, oddly enough.

10/25/08 – This has all in all been a good couple of weeks. It may not seem significant that one’s feet are loosening up but I assure you that it is quite significant; I believe its one of the most significant improvements I have had since I’ve had this illness. Actually its not just my feet its my lower body but you stand on your feet; they are the foundation of your body and if they don’t want to move – and my feet have given no indication that they want me to go anywhere – then its going to be that much more difficult to go anywhere.

Being able to go back (in my mind) to those prior times of health has been a big step for me. Its been so difficult to do but its really loosening up. It was odd how my feet have played such a prominent role but every time I could really put myself back into those shoes, so to speak, – get back into those memories and experiences of so long ago – that’s where the action really was.

First I noticed that my typical stance is feet spread wide apart and set outwards – a very stable position – almost as if I was standing on a ship whose deck was rocking. – not a bad analogy for chronic fatigue syndrome (ME/CFS) as all. As I got back into that sense of health my feet and legs shifted forward and my stance narrowed noticeably. Then over the past few weeks my feet have kept shifting – almost as they were if finding new ground. Several posts ago I noted how my ankles had kind of unlocked; with a pop they just loosened up. They and my feet are continuing that process and, of course, its lead to more energy and a feeling of more well being and relaxation. Think if how much energy it must take to keep everything in a rigid position – enormous!.

Another thing that has improved is my sleep. I’m still sleeping in the car and I still wake up early but almost every day after I wake up I drift into this more or less profoundly peaceful state. It was so exciting when it first started happening that I would inevitably drive it away at first. I would feel it slowly drift in and I would think ‘Oh here it is – come on, please come, please come” and I would just drive it away. But it kept coming back and I’m more relaxed with it and over time has deepened. I don’t even go to sleep much of the time – I just lie there feeling this enveloping softness that is so relaxing and unlike anything I’ve experienced over the past 25 years.

It hasn’t been all up; I overdid it several times (of course) and have been really busy and haven’t keep up with the training process as well as I should. But it has deepened and I see no reason why it shouldn’t continue deepening. I can go back to times decades ago when I was healthy and my body seems to be conforming to those feelings and slowly realigning itself with them. I still cannot reach myself or visualize myself exercising; there’s just blankness there and I certainly can’t force myself or my body to go back and re-experience what healthy exercise was like. There is no forcing this kind of process; it either comes or it doesn’t. You have to kind of sit there in a state of ‘waitfullness’ and gently prod at it and see what arises.
Sometimes it doesn’t come but when it comes its good!

11/21/08 Re-inventing the Body.

Another good couple of weeks. For the first time I can say that I’ve increased my ability to exercise – a big step for me and something I wondered if this program would be able to accomplish. I seem to be moving more and more into a healthy body – in a sense I think I’m re-inhabiting my body; rejiggering my brains orientation to it and tamping down those negative signals which cause it to erupt in turmoil.

This hasn’t been a easy couple of weeks. I’ve the usual unusual problems that seem to always be cropping; cramps in my legs (from scrunching up my legs to sleep in the car) put a nosedive on my improved sleep, my sensitivities erupted for a couple of days and I had to stop typing because of shoulder pains. Plus I’ve been overdoing it on the exercise front – and suffering because of it.

Still there’s a new me emerging or rather an old me re-emerging. Its kind of surprising really. The Gupta program really has four main parts, the retraining exercise (with two main parts), the soften and flow technique and then the meditation. I have never been able to ‘get’ the first part of the program (still no negative thoughts to interrupt!) or the soften and flow technique. But I’ve done well in the last part and the meditation and that’s what carrying me. Plus I’ve been doing something called mindfulness based stress reduction – a different kind of meditational technique – and having excellent results. And its very natural – its not like hoisting some new state on oneself; its like at times sliding back into that old (and instantly recognizable) sense of grace and health that I had before. Its intermittent but its also slowly building.

Several studies suggest that ME/CFS patients have problems with their ‘motor planning’ – in being able to plan out movements. This is obviously a key area in ME/CFS. I can sit and work and do relatively OK but its when I move that things go really crazy. Could it be that a part of the brain that plans movement has been damaged and the program is rehealing it? I’ve heard that the brain goes through the same activities when it imagines movement as it does when we actually move. I’ve had the hardest time getting back to a state of ‘running’ in my mind. I just draw a blank – I am just barely able to begin to access that -just flashes. I wonder if you put ME/CFS patients and healthy people in a fMRI and had them imagine themselves running if you’d just get blackness in the ME/CFS patients? I wonder if the program is re-building connections that were lost. The brain is, after all, a very plastic organ.

Now that I’ve improved my ability to exercise I honestly don’t see why this process shouldn’t go to its logical conclusion; full exercise at some point. Why not? I’ve made alot of progress thus far. I started off at a very low point. I was so afraid of my body that I literally would not follow one of the instructions of the program – to produce a sense of health in my body. First I built up energy outside of my body. I would kind of create these circles of energy in front of me. That worked but it got little energy into my body. At the time I didn’t even realize I was ignoring my body – it was what I did naturally. Later I was able to get my body to kind of calm down and feel relaxed. Now I’m finally – 9 months later – actually pumping some energy into it at times.

(But why this post-exercise crash? Why is that six hours later I’m really starting to get whacked out? One study suggested that the exercise response in a sense didn’t’ turn itself off in ME/CFS patients, that the muscles remained in a state of contraction. This could suggest an ongoing state of hyperarousal – the body just can’t turn itself off and settle itself down. This seems to be true in so many ways; hypersensitivities to chemicals, to foods, to negative thoughts, to excitement, etc)

1/18/09 – Falling Off the Wagon

Its been two months! Two rather intense months. I have been hammering like mad at this website redesign – I’ll felt a real urgency to get it done and its intense stuff – its very difficult – breakdowns are the norm – and I find myself getting really wound up. My good sleeps are over – I’m in Las Vegas where I find it almost impossible to sleep well. .So my daily stress level has ratcheted up dramatically.

Basically I’ve stopped doing the main process but have continued doing the meditation plus I picked up the body scan and have intermittently been doing mindfulness-based-stress-reduction. I have been doing less of everything – and iI must say it does show.

The mindfulness stuff – casting your attention to things you normally don’t – the touch of your hand on the steering wheel. the leaf on the ground, the breeze on your face -can be extremely helpful. I am the wired and tired type – turning down that motor is, I’ve come to realize, my main goal and doing these techniques can quickly do that at least for short period.

I was getting really good at that but my headlong immersion into this project has really dampened my ability to do it. It’s amazing how wound up I’ve gotten over the past the month. Its takes a practice – a day to day practice – to slowly wind down the system.

What I find really interesting is the different effects the different tools have; the AR packs the most short term punch – at times it really seems to re-organize how I’m functioning.

The meditation gives me a baseline from which to deal with my bodies turmoil. Its allowed me to watch the fits and starts my thoughts have on how my bodies functioning. Its amazing to watch a thought pass by and my body tighten up, my breath to stop and all sorts of shenanigans occur. By the way the thought is not most often about illness or my body – any negative or a bit alarming thought – can send things into turmoil.

This all takes time; short-term and long-term; you have to take time out regularly – and you have to keep at it. Its not ‘hard’ but its easy to fill your day with other things.

Despite all this stuff going on – and I anticipate it will go on for another two months – my health overall has improved quite a bit. I always dread winter because I am forced to stay indoors more which causes my sensitivities to flare but my sensitivities have been much lower this winter and my comfort level much higher.

I was able to do a protein drink fast – something I find very relaxing – for five days (!) – two days longer than ever before. My body feels nice and light, my mind is much clearer and at times I hardly notice my body – I don’t need to do the AR or watch how my mind is doing – I just feel good. This suggests to me that we are hypersensitive at all levels.

My ability to do exercise without flaring has improved as well. I’m not truly exercising but I am walking more without relapse.

If all goes well I’ll have forums on the website fairly soon – and plan to have an Amygdala group – so all who wish to can compare notes.

Watching – Very Closely (1/21/08) – Throughout this process I’ve been doing something psychologists have said I shouldn’t be doing – paying very close to my body- basically watching it. I remember when I came down with ME/CFS over 25 years ago I was advised not to meditate because that would cause me to focus on my symptoms. Now I find that paying conscious attention to my body very closely really pays dividends.

This is of course what Ashok has us do in several of the exercises but I’m doing it all the time right now. It all makes sense; as Ashok notes if the problem is an unconscious, out of control reaction then one way to fight it to use the conscious to turn it off. Think of the crash – the body seems to churning away in disarray – it seems the gears are grinding against each other – muscles hurt, etc. – its very much seems like a fear based reaction. Just the act of consciously examining the body starts to turn the motor off. Instead of fleeing the symptoms turning a spotlight on them settles them down – at least at times!.

May 25th – I am continuing to slowly improve. I had an amazing session a couple of weeks ago. This is the way it always goes for me – have a little breakthrough – and then backslide alot but slowly continue to improve. I’m using a variety of different techniques to do that.This whole field – mind/body, stress reduction, meditation, AR has been ¬†fruitful for me even if its quite slow. I’ll start this blog up again when I get the forums on the site – hopefully shortly. Yours truly, Cort

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