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An Update on my Life with ME/CFS through 2011

 

It is early in January 2012 as I begin this update.  My immediate state of health is perhaps a good summary of 2011.  I'm at my keyboard exhausted and in pain.  My eyes can barely stay open through the burning tension.  My back is doing all it can to support me in an upright position.  Every thought is run down and captured through that over described fog.

So what did I do to bring on such a state?  I slept in until awake.  I did 10 minutes of mild exercise on a rebounder.  Drank a nutrient dense, but easily digested smoothie for breakfast.  I read a few emails and had one 10 minute telephone conversation. And I had a shower.

I will get up and do some chores soon.  They must be done.  I will go out and shop for a few items.  All this will be done, climbing a sandy bank of pain and cognitive decline.  I will prioritize, push, and pay.  But why not?  There is a life out there to be lived and it is a sunny day.

Moderation?  The 50% rule?  Those margins of activity leave only bed rest as an option.  I have had quite enough of that!  I'll continue this article when I am back home and able.

................. 

Several days have passed.  We had a high pressure system which brought greater energy and resilience.  There was sunshine, which was a bonus in this land of winter grey,  but the energy seems to come more from higher barometric pressure.  I awakened in a blacked out room, feeling refreshed.  We are back to grey now ( an intense low system), and I'll resume my summary of the past year.

..................

2011 was a good year to test my abilities to perform, adapt and cope with some unusual life demands, under the limitations of ME ( Myalgic Encephalomyelitis).  Two major factors ruled most of the year.  My spouse had her contract in Ottawa extended, and so my lifestyle included a monthly transcontinental commute and sole upkeep of our Vancouver Lower Mainland residence.  Also I tried to help as much as I could with my parents' health concerns.

My commute to Ottawa and back involved a variety of forms of transit, and would take up to thirteen hours.  It would also take me up to three days to recuperate on each leg of the journey.  Ironically, the disorienting exhaustion helped me to cope with the time changes.  I also learned that I could withstand the demands of travel if I carefully regulated every aspect, and gave myself adequate time for each portion. 

For example, the walk to the first bus stop is 5 minutes.  I found that I needed a good 15 minutes to comfortably achieve this.  Also, I had to leave the house at 5:15am, which meant getting up at 3:30am.  I needed that extra time to allow my brain to achieve the house closing tasks without overwhelm and shutting down.

And so I learned an inverse to the 50% rule ( do 50% of what you think you are capable of achieving).  When faced with an obligatory task, I have to give myself at least double the amount of time it would take a normal healthy person.  I also have to give myself structured resting periods within each stage of a greater task. ( e.g a 10 minute rest at the first bus stop. Closing my eyes, using ear plugs ( or earphones) and napping on the train. Using a brainwave inducing meditation soundtrack on the first leg of the air journey.)

My travelling and my day to day routines taught me to use passive methods to cope.  But dealing with my parents' health challenges taught me more active methods and also revealed my limitations.

My father has dementia which is progressing at a steady rate.  He was also diagnosed with an abdominal sarcoma which required extensive surgery, and then experienced post surgical complications.

I offered to help as much as I could.  This meant spending nights at his hospital bedside post surgery, communicating with family and health providers, and using transit to commute to and from the hospital.  I also helped with my parents household affairs, as they had recently moved into a smaller home.  And once my father was discharged, I helped my mother set up the various home care services.

These demands helped test my abilities and resources.  Spending the nights, sitting up in a hospital chair was one of the easiest tasks.  ME/CFS has disturbed, unrefreshing sleep as a symptom, so I was used to it.  The hospital routine is well structured and easy to take.  But hours of repetitious conversation quickly wore me down.  Of course it also drives my mother to the end of her nerves, so I can't blame ME/CFS for this.  The difference is in the ability to recuperate.

I noticed that within the month I was actively helping, I went from being able to accomplish several chores a day to barely able to accomplish one.  And once I returned home, it took a good 2 months of enforced rest to bring my reserves back up.  This continues to be a pattern.  I build myself up and then become depleted in a very short amount of time.  But life has its demands, so I plan as far ahead as I can. 

This past year also gave me insight regarding some popular misconceptions regarding ME/CFS

The myth of graded exercise therapy for ME/CFS:

The challenges of this past year have given me a clear perspective on the concept of graded exercise for ME/CFS.

I have incorporated regular exercise in various forms from the very beginning of my illness.  Graded exercise has never worked for me.  In fact it has been instrumental in some of my greatest relapses.  In 2010 I did a graded exercise program and suffered from injury and fatigue.  What has worked for me this year is " episodic exercise".

I am a fairly strong person, considering my health limitations.  When I am rested, I can walk for extended periods in dry sunny climates.  I wrestle a 50lb suitcase from bus to train to subway and across airports on every trip.  I dead lift a 120lb garage door while awaiting repairs.  I climb and descend 3 stories in our townhouse without a thought during periods of ability.  I have a good base level of fitness and strength. 

I've learned to achieve and maintain this level of strength by exercising during my times of increased energy.  The exercise will not be to the point of fatigue, and will incorporate lifestyle activities ( gardening, walks, house chores) as well as movements to build strength and flexibility ( rebounding, sit ups, triceps dips).  All these activities are done when the energy is there.  If I try to do them when I am fatigued I will be nearly bedridden for weeks.

Also, graded exercise for ME does not explain why I will suddenly wake up and not be able to make it down a single flight of stairs without holding on to both the rail and the wall.  Or why I go from walking for miles to barely having energy to breathe.  There is more to the physical fatigue and weakness and pain than deconditioning or overexertion.

( There was some interesting data regarding the inability of ME/CFS patients to achieve VO2 max during stress testing, perhaps indicating some other factor at work than simple deconditioning and CP deficiency.  But that is for bigger brains than mine to solve.  Like all easy answers, look closely at the details and parameters and duration of follow-up of the testing in the research papers.)

The flaw in Cognitive Behavioral Therapy for ME/CFS:

This past year has given me enough stress points to challenge the validity of cognitive behavioral therapy.   I was sent to a University of BC hospital program quite soon after my diagnosis.  I like the concept of CBT, but never found that it worked for me with my symptoms.  Also there always seemed to be something wrong with the techniques.  They never solved anything.

This year I was introduced to The Sedona Method which seems to have added the missing piece to cognitive behavioral therapy.  It still didn't get rid of my ME/CFS symptoms, but it made an amazing difference in my ability to cope with the stress of the year.

The difference between CBT and The Sedona Method is that The Sedona Method focuses on "welcoming" the disturbing feelings, where CBT focuses on "interrupting" the thoughts.  The thoughts inevitably return, whereas the feelings, once dealt with, seem to vanish.  And honestly, most of the distress is in the feeling aspect.

Also there seems to be an ME/CFS personality type which makes CBT redundant.  We are reported to be people who naturally resist limitations and push past barriers.  We don't need more lessons on how to snap out of it and move on.

There is much more to The Sedona Method, and too much to get into here.  It is a simple process with deep roots and worth exploring for anyone.  I'll personally spend more time exploring it in the future and relegate my CBT elastic bands to the desk drawer.

Brain Fog Clarified:

I've recently gained a better understanding of what we call "Brain Fog".  The Sedona Method allowed me to gain some distance from the experience and observe what is going on.  There seem to be two basic experiences.  I'm sure they are both part of a common whole, but the experiential distinction is worth noting.

One aspect of brain fog is in output.  The struggle to assemble a thought is surpassed by the physical expression of the thought.  It is as if my brain has to push the thought through my body, down to grudging fingertips, or even worse, my vocal apparatus.

The practical result of this is that I am often brushed aside or abandoned when doing any sort of collaborative work.  And group discussions will inevitably leave me as a mute observer, still trying to form words for a long abandoned topic.

The second aspect of my brain fog is sensory.  This is where the word "fog" is a misnomer.  It is actually an overwhelm of information.  I seem to have no cognitive filters.  So the fog is more like a cascade of information.

This cascade of information has its good points.  I am an excellent driver.  The car isolates me from all sensory input other than that which is needed to operate the vehicle.  I can then process much more information than most drivers and anticipate patterns and dangers. ( needless to say, I do not use a cell phone while driving)

I am also very good at research.  If I can control the amount of stimulus in my environment, I can then process huge amounts of disparate data. 

The lack of filtering has had its challenges and will be the focus of my efforts in the coming year.  I've fallen into some unhelpful habits in the effort to quieten down the bombardment.  But again, the perspective I've gained this year shall be put to good use.  Habit, structure, containment, and disciplined selection of stimulus will be tried.  I'm not going to live in a bubble.  But I am going to be more conscious of my choice of adventures.

 

A summary of my ME/CFS for 2011:

Orthostatic intolerance:  Same

Inability to process multiple audio sources: same

" Brain Fog": same

Barometric related symptoms: same

Fitness level: same

Reactive Arthritis: still episodic, but somewhat improved

Cognitive Abilities: Worse ( but better understood)

Stress Levels: reduced 

(note: the 2nd half of this article took 7 hrs to write)

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