(This brings my story on the website up to date)
After 25 years plus with ME/CFS I had tried all sorts of treatments. For about the first 10 years nothing worked and then all of a sudden lots of things began to work. Zinc solution, for some reason, all of sudden, bumped up my energy noticeably. A single dose of transfer factor briefly seemed to almost transport me back to my former period of health leaving me with the uncanny sensation that I had temporarily touched a realm of clarity that had been sitting there unaccessed for over a decade.
Many other lesser ‘triumphs’ occurred but all ended in the same strange way – first came the painful spots on the inner elbows, following by the pain in the knees, the joints crackling and popping, the jitteriness when I tried to talk, and then finally the foot sweating, fluey feelings and the descent into fatigue. The really strange thing was that my little bursts of energy seemed to unleash a whole different pattern of unwellness for me; usually I was ‘wired and tired’ and unable to settle down – but energy bursts threw me into the must sleep a lot, fluey, joint achy immune symptoms.
To demonstrate how close and at the same time how far I was from getting well, even meditation for a short time worked splendidly. After just a couple of sessions my energy shot up and, to top it off, all that deep pelvic breathing actually sparked a minor but much welcomed revival of my long lost libido. In relatively short order, however, even meditation triggered when I had come to call my ‘reaction’. Visits to several doctors including Dr. Cheney, during a short financial renaissance, had been fruitless. (Dr. Cheney’s comment was something to the effect of “Well, we’ll to give you something that doesn’t increase your energy” – not exactly what I was looking for).
I looked at the complex protocols other people were on with dismay; not only were they beyond my means financially but it generally only took one supplement to put me over the edge. Eventually I simply stopped searching for new supplements.
I was stuck. I was still quite ‘functional’ – able to get around and go to school and work but inside I was a mess with lots of muscle and other pain and fatigue and always feeling drained and edgy.
S. California Desert – Then a period of forced exercise that seemed temporarily to actually work appeared to trigger a new and more limiting foe – chemical sensitivities. Over time, they became strong enough to push me completely out of the workforce and I ended up camping in the desert for a time. Over the next couple of years my sensitivities both faded and increased; eventually I became sensitive to many plants in the desert but at the same time became more tolerant of the urban environment.
A New Approach – By the Amygdala Retraining (AR) rolled around three years ago I was mostly back in the city, sleeping outside or in my car. The AR was completely different from anything I’ve tried. For one thing — it asked me to keep a close eye on my body, thoughts and feelings. I had done anything but keep a close eye on the seething turmoil that was my body; in fact I tried to ignore it as much as possible. On the outside I probably appeared to be a sober enough individual but inside, often enough, all was chaos with often painful body sensations cascading across it sometimes at the smallest of incitements. A little exercise helped; a little more than a little however, exacerbated everything.
Ashok Gupta postulated that the fear center of the brain, the amygdala, was turned on in ME/CFS. After taking a closer look at my body and my mind I concluded that he amygdala retraining and CFSmight very well be right. Anything, it seemed could set my body off ; talking to a checker at a grocery store could send chasms of change spreading across my body. A walk to the store was always an adventure – who could tell what would happen? My shoulders were hunched, my teeth were gritted, my muscles were tight….was my body in a state of tension? It certainly was – system arousal, hypervigilance, turned on Amygdala…..call it what you want – I just couldn’t settle down and I had some pretty good evidence that my body didn’t really want to settle down; after all every time it did settle down after those nice clean and relaxing bursts of energy from my treatments- it fell apart.
In any case Gupta’s model appeared to fit my situation like a glove and I started looking at more closely at the things that set my body off. Clearly too much activity did and I started to pace myself more rigorously. (The real exercise had disappeared decades earlier but there were still those 15-30 minute walks I was taking a couple of times a week) . I also started meditating again – unfortunately without the really positive results I’d gotten 15 years early but it did settle me down and induce feelings of calmness. I found that as my breath settled down my mind did as well and vice versa.
Gupta’s instructions on catching and stopping negative thoughts and then sending my body back to times of peace and energy were difficult for me. I was rarely able to catch negative thoughts and I had problems envisioning times at which I had lots of energy. Nor did I do well incorporating the rather long conversation he suggested into the process. I also found it difficult to devote the time to it that Gupta suggested. Overall my progress was intermittent and consisted of some temporary but impressive gains followed by slow (and often no) gains.
Eventually I focused on tamping down my body as it roused itself and putting it into a more relaxed state. In the end, Gupta was good for me; there were many times that it really didn’t work, in fact, I would guess that it didn’t work more than it did work but when it did work it worked quite well. I kept at it intermittently but over time I slowly drifted away from it.
A Safer Environment – Last year for the first time in decades I had a living space to myself and the tension of having to impede on the other members of the family dissipated. With the clean tile floors in my apartment I was able to work for much of the day without my chemical sensitivities overly bothering me. The downside was increased financial hardship to my family.
A New Approach – After my brother offered to help pay for a ‘life coach’ to help me get on my feet financially. I picked Christine Silvey – a woman who had experience in the Landmark Forums, the successor to the EST training and other disciplines. The EST training was my first experience of the power of ‘mind/body’ or mindfulness work. Taking the EST training, a transformational course designed to increase one’s vitality and quality of life, had been an important event in my journey with ME/CFS.
The training was designed to help people experience themselves as separate from their thoughts, considerations and stories – basically to view themselves as a space of nothingness from which their experiences emanated. Few people came out of ‘the Training’ without increased vitality and I was no exception, I was still severely exercise inhibited but my pain was reduced and my energy increased.
Mind/body exercises – Christine initiated a series of exercises that were at times quite helpful – none of which were specifically devoted to CFS. As with Amygdala Retraining process I quickly clarified how responsive my system- was to small stressors. Even minor events could send my heart pounding, my breath to shorten and painful sensations to cascade across my body. Physical activity would definitely trigger these reactions but so would thoughts and I noticed that many of these did not have anything to do with my body or CFS -they were simply negative frustrated thoughts.
Of course it made sense for me to be frustrated and angry. After all my expectations growing up hardly accorded with the reality I was living in; dependent on my family, extremely limited physically and basically feeling not well -contantly bothered by aches and pains and fatigue. Heck yes, I had a lot to talk to myself about. When I engaged in conversations coming from anger and disappointment, though, I noticed that my heart rate increased, my muscles tightened, my jaw clenched – all actions that clearly used up considerable amounts of energy.
I found that most of my frustrations and worries and upsets had nothing to do with CFS, per se, but with the everyday problems this chronic illness threw up for me in daily life. I seemed as I was in a state where any kind of resentful, angry, worrisome or fearful conversation about anything would take its toll. I didn’t appear to over sensitized to my symptoms – I simply seemed to be getting wiped out or amped up or wired by normal every day problems. (One study, in fact, suggests that simply imaging a negative situation can throw their breathing off causing the CO2 levels in their blood to rise – contributing to fatigue and other problems. ).
This exploration of the mind/body interface I undertook with Christine was broader than with Gupta. First I was asked to create a vision of what I wanted in a year. Besides financial security, a house and a dog and the sense that I was making a difference what I really wanted was serenity and I found that simply by focusing on that I could create for a time, conditions of serenity. As I did that I was activating areas of the brain where serenity was created – carving out stronger connections to that area – and deactivating areas where anger, frustration and the like were produced.
In the broad outlines much of it was doing exactly what Gupta, Parker, Freidberg and other mind/body practitioners were doing – creating openings for pleasure and for more happiness and stepping into them – and turning away from conversations and thoughts and feelings that sent what was apparently weakened stress response system cascading into turbulence. In some ways it was ridiculously simple – it was about find ways to be happy and letting my body relax but I had never approached happiness like it was a job or a goal before; I felt that happiness was something that either happened to me or didn’t. Now I was learning – to my surprise – I had a real choice in the matter.
I created a series of ‘inner intentions’ – such as being the possibility of joy, or love or well-being that I would attempt to bring to the work throughout the day. I looked at my beliefs frequently or how the world was occurring to me at that moment. I found that there were many times I could create a more comfortable existence for myself simply be looking at what assumptions I was coming from. Generally I engaged in this type of work better in the morning, then ‘lost it’ during the middle of the day, and then regained it as my energy crept up at the end of the day, in the late afternoon. It was clear that it took energy to marshall ones thoughts and to pick out distinctions and employ them.
When it worked though, it worked and I was able to work more calmly and peacefully and at times I enjoyed feelings of peace and contentment I had not for many years. Like Gupta it took ‘work’, repetition and a kind of attention that few people engage in. It was also quite slow – punctuated at times by small breakthroughs, and other times by almost imperceptible progress or none at all.
The CFSAC Test – As I slowed down my body seemed to relax into a healthier state, my posture improved and I began breathing more deeply than I had in years. (Earlier I had viewed Ashok Guptas admonition to breathe deeply with alarm – my body seemed too tense to be to accommodate that).
At times I felt almost ‘wellish’. I carried this increased sense of health into the CFSAC meeting where Dr. Klimas commented on my improved posture (proving once again how much more perceptive women in general are). She said “My patients always start to stand straighter when they start to get better”.
Overall I did better. Usually the carpeting drove me out of the conference room by the second day but this time I hung around until the afternoon of the third day. By then I felt weak and had trouble marshalling my thoughts and experiencing vertigo. (While I was holding the ACT NOW sign I almost fell over on Kim McCleary as she spoke.) It time to get out there.
During the meeting and for the next couple of days I did more walking than I had in quite a while – not a lot….Not more than most people walk in a day – but more than I was used to. Of course I went too far – I am still, several decades later, all too unfamiliar with the subtle danger signs (muscle tightening, more difficulty thinking, heart pounding) that signal I am approaching the end of my metabolic rope.
I paid for my exertional transgressions over the next 10 days with my own peculiar type of crash; painful, burning muscles, reduced concentration, heart pounding, naps galore, and interestingly enough – poor posture – it seemed almost as if my muscle had been put in a state of contraction, shoving my head down and collapsing my chest.
My mind/body work took a severe hit – it seemed as if I lacked have the energy to access it. My 3 day period of overexertion took a full ten days to dissipate from my system.
Complications at Home – Things had become complicated at home. I was able to sleep on my brother’s balcony in DC but my balcony at home had become off limits.
As the weather heated up the fumes emanating off the stucco balcony made it impossible to sleep- so now I was sleeping in my car again. Then my apartment, now nicely aligned with my work – clean as a whistle and with helpful quotations keeping me on track – become off limits after the driveways were retarred. For two months I had essentially been living out of my car again – typing away in Starbucks – never a good place for me because of all the coffee fumes.
The mind/body program was being severely tested and it did bow to the circumstances. I kept at it but my progress slowed, my energy declined and some of the really good feelings dissipated.
Mind/body exercises for ME/CFS – Still, over time I became more vigilant. I was sleeping better and was able to engage in the ‘work’ earlier in the day. Thoughts do have power and my guess is that when you’re weak they have more power than ever, and when the stress response is involved in your particular illness they can present a world of trouble. Some conversations produce healthy states of being and others produce unhealthy stress-ridden states of being.
I can’t understand how someone with ME/CFS or any other chronic illness, who is often isolated, dependent on others, have seen their ambitions drop away and hopes and expectations shatter and feeling lousy to boot could not help but engage in negative, energy depleting conversations that leave them frustrated and angry – and their systems riled up.
Healthy people, after all, are filled with negative conversations. It was during Christine’s coaching that I started to look at other people and I can tell you that very, very few people seem to be enthusiastic about their circumstances. Mostly what you see are people mulling over things with somewhat darkened expressions – not a pretty sight really. For whatever reason they can easily physically handle those kinds of stressors. It was more and more clear to me, over time, that I, physically, could not.
Mind/Body Work – For the third time mind/body work (EST training, Amygdala Retraining, Coaching) has revealed for me it’s positive aspects and it’s shortcoming. One the plus side it is able, at times, to bring a kind of piece and resilience and joy that I had forgotten about. On the minus side it’s never been able to significantly impact my physical functionality; that is, while I feel better within my sphere of activity I haven’t been able to enlarge it much – I am still about as exercise challenged as before.
I much clearer, after all this, at what I need to do to increase or maintain my sense of wellness.
Watch My Body and Mind– my body reacts much more quickly than I do to events. I have found that angry, resentful or fear mongering conversations mostly take place (as Gupta suggested) in the subconscious and they manifest themselves in shortened breath, contracted muscles, etc. I can pull myself out of that state in any number of ways -by shifting my attention, by understanding what they are and by employing various techniques. Sometimes it works and sometimes it doesn’t but when it does I can feel body settle down.
Taking Care with Exercise – Being careful about the amount of ‘exercise’ I am getting is, of course mandatory – I find it very difficult engage in this type of mind/body work fruitfully if I have overdone it. On the other hand engaging in no ‘exercise’ is detrimental as well. Engaging in restful and meditative practices every day is helpful. Actively creating and looking for more joy and pleasure is at same time – not easy- and very helpful when it works. Taking more time off is important.
Clean Environment – Having a clean (non-toxic) physical environment that supports me is essential as chemicals tend to deplete me in much the same way that exercise diet and CFS does. Diet is quite important; my diet has always been ‘excellent’ but grains, soy and sweets are all energy drainers for me and cutting them out or reducing them has helped.
If I can keep working on these things – I believe I can look forward to a continually increasing quality of life – albeit one that still comes with some rather remarkable physical limitations – but still increased health and well-being, just the same, and that is, after all, what is essential.
I also recognized that I had allowed my frustration over my ‘reaction’ to energy producing treatments to overcome the fact that they have, for short periods, been quite effective at times – much more effective, in fact, than my mind/body work – at producing energy. (I did a trial of COQ10 recently – one of the supplements that I love – and received the same results – increased energy that exceeded anything I had been able to produce with mind/body work – followed by a crash.) Exploring them more will play a bigger role in the future.
I regard treating ME/CFS for me – with our crude understanding of it and the crude treatments available – as doing a lot of little things correctly – things that reduce stress on the mind and the body and allow some healing to take place. If I got well tomorrow I would continue doing mind/body technologies /transformational / spiritual practices (and I imagine I would accelerate them) because they can play a major role, I believe in creating wellness in sickness and in health. I will be blogging on my continued explorations in this area.