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)
I still have a long way to go - still haven't really exercised - just walked more - this is all quite slow but I feel like I'm on the right track.