Colin Noden:

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An Update on my Life with ME/CFS through 2012

The end of 2012 was the same as the end of 2011 in regard to my condition. However the year brought some insights and practical helps for my ME/CFS.

My current condition is also the same as how I began 2011.  Upper body with searing general pain.  Eyes burning and barely able to keep open.  Short term memory limited.  Concentration limited.  Inability to filter audio.  Unable to converse because of delayed processing.  Barometric intolerance is most notable during the winter storm season.

My physical functionality is also the same.  Orthostatic intolerance.  Unable to walk more than at a slow pace.  Unable to perform an activity more than 30 minutes without searing blinding, breath robbing pain.

The good news about 2012 is that I learned some valuable coping techniques. 

Banking energy seems to work.  Also strategic episodic activity helps get the most out of times of obligation.

An example of this would be on our vacation trips.  We try to go when there is a stable high pressure barometric pattern.  I do minimal activities for a period before our travel.  We time our flights to take advantage of the most direct routes.  We spend extra on hotels to give adequate rest periods and comfort.  And our days are structured to supply periods of long deep rest.  We still do a lot of things during our vacations because we also prioritize our activities.  In fact a lot of fellow travellers may think that I have an excess of energy.  But that is due to the fact that I am performing at the peak of my ability, while most others are relaxing.  I pay for a week’s activity for weeks and months after, but the memories are worth it. 

The trick is to space my times of increased activity.  If I have a demanding situation presented before I am back at a functional level, I will severely relapse.  I think that part of this is due to cortisol production.

I was intrigued with the involvement of cortisol when I read a commentary on a rat swim test.  The reviewer said that it showed cortisol as a hormone of despair rather than one of anxiety.  The image of a rat swimming in an inescapable tank, to the point of death is very near to a life with ME/CFS.  So I thought I would experiment with ways to reduce my personal cortisol levels and see if there were any subjective health changes.  Please understand that this is a palliative measure and no research has indicated a link between cortisol production and a cure for ME.

After doing some research into over the counter natural methods for reducing cortisol, I chose Relora (tm) and some brain wave inducing, subliminal soundtracks from Paraliminals ( developed by Paul Sheele at Learning Strategies ).  The Relora would work systemically and the paraliminals would work at a hypnotic subconscious level.  Both of these are passive methods and would take minimal effort. And as a result, they had less of a chance of producing rebound anxiety. The effect proved to be almost immediate and sustained.

The most remarkable effect was an ability to focus and concentrate for longer periods.  One of my most frustrating cognitive problems is what I call my mental circuit breaker.  I can only take in so much information before my mind goes numb.  An example of this is a course I am currently taking.  It can be completed in 90 days according to the teaching guide.  It has taken me over a year so far.  I will read some material and then everything shuts down; body and brains.  It is the old “One Step Forward, Two Steps Back” routine.

When I return to the course, I find I have forgotten what I have read and will have to go back to a point I recognize.  I will then move forward until I break down again.  Two things happen to help me move forward.  The increase in concentration has given me longer periods.  And the repetition of the material slowly filters into my long term memory.

It is interesting to note that I can also scan vast quantities of material with little problem.  It seems that the part of the brain used to learn the lessons is the same, or near to, the part of the brain which makes “cut and paste” activities agonizing for me.

So this year has helped me develop three good coping techniques:
1. Strategic Activity Planning
2. Passive Cortisol Reduction
3. Effective Study Techniques

The core disabilities are still with me and still limit me,  but a growing sense of control is helpful.

Author: Colin Noden

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