An Update of my ME/CFS through 2013
This past year added some distinct
challenges to the mix. Our relocation and some training programs added time and task demands which were measurable
and unavoidable. I also had several personal trips and social obligations which presented their own unique
My core symptoms remained pretty
much the same except as noted :
* Disabling Fatigue Levels: same
* Orthostatic intolerance: same
* Inability to process multiple audio sources: same
* " Brain Fog": same
* Barometric related symptoms: same
* Fibromyalgia: same
* Fitness level: improved through weight bearing activities
* Reactive Arthritis: still episodic, but somewhat improved
* Cognitive Abilities: worse ( but better understood)
* Transient neuropathic pain: same
* Stress Levels: increased ( see below)
* Cardiac dysrhythmia: reduced
This continued to be the
case throughout 2013. The stress levels were increased more because of practical outside demands than because of
internal response. For example: meetings had to be attended, flights had to be taken, deliveries and deadlines had
to be kept. These kind of stresses were practical in that they took away the flexibility and opportunity for any
recovery time I needed.
Other stresses could be seen as responsive, but were also
exogenous and unavoidable in a social context. I could have stayed away from any farewell functions, or events
which demanded attention to too many stimulus sources. But that was not socially feasible. These events bombarded
me beyond my capabilities. My response was to accept them and understand the social benefit, but that did not
lessen the physical pain and damage.
I mention this because I realize that CBT (
cognitive behavioral therapy) enthusiasts sometimes preach that everything can be ameliorated through perspective
and control of response. However, an athlete is told to “rest, ice, and elevate” when faced with injury, but ME/CFS
patients are told to cope and carry on. This shows the denial of the physical element of the disease by those who
push for CBT. I only mention this now because the opportunity arises to make the distinction
The practical demands of various
tasks also gave me good perspective on my abilities. For example, I was given several writing assignments with
deadlines. This showed me just how slow my processing is. It also showed me just how slow my physical abilities are
ie. typing and walking and the ability to remain upright in a stationary pose for any sustained period of time. It
is one thing to perform tasks in an isolated situation, and quite another to perform on demand. I’m afraid I was
retarded on a number of fronts.
Dealing with others while reading
and assessing documents also exposed the deficits in my cognitive function. To be blunt, I am slow. Painfully slow.
But I am stubborn. I cannot read and process as fast as is needed to be considered normal. This is often masked by
the fact that once I do understand something, I understand it more thoroughly than most. But this comes at great
physical and mental cost. I literally inch my way through material. I read, and then loop and reread, and then
again, ad nauseum, until the information soaks its way into my brain.
My numerical skills suffer from a
combination of deficits. One is the simple mathematical processing. But I’ve noticed that the other is some sort of
physical cognitive disconnect, which manifests in other ways as well. For example: If I pay for a $4.70 loaf of
bread with change, I can work out that I need a certain combination of coins, even before I pull them from my
pocket. However, once they are in my hand I cannot recognize the right combination. Then as I count the coins out
on the counter, I cannot add them. Part of my brain is telling me that this is the right combination. Another part
is in pure bewilderment at the cluster of silver in front of me. Both perspectives hold equal weight and so I am
stalled and end up having to ask the clerk to confirm the amount.
Pain, cognitive dysfunction and
exhaustion continue to be ever present and only vary in the dominance of experience. They interact but are
separate. The pain is at the very least a constant burn, and at its peak, blinding, searing, and piercing. Breath
and sight are taken away when pain is at its peak. So of course there is pressure on my cognitive
The cognitive abilities go from
hardly noticeable, to an inability to form words. I’ve written about the various manifestations of my cognitive
frustrations at length in other places, so I’ll just point out here that there is a link to my fatigue and my
The fatigue is the most
frustrating because there is no good handle on it. There are rules of thumb, which are constantly broken. I’ve
written about banking and structured rest, and low rep weight bearing exercise, but these are only loose
guidelines, which work more often than anything else. This does not mean they can be considered therapy. Merely
coping skills which work for me...when they do. When they do not, they wreck any advance I’ve made. So is this just
perceived influence of random chance? I don’t know. Perhaps it is just a chronically ill person’s version of a
gambler’s ritual or athlete’s lucky charm. My physicians have just pointed out that there is no harm in exercise,
rest and structure. And so I continue to use these to battle the fatigue.
The fatigue is mercurial. One
minute, or one day, I’ll feel great. I move, I get up, and bang, I’m incapacitated. This is why I like the gambling
analogy. The gambler thinks he knows the pattern and thinks his rituals cast influence on the outcome. But in
reality he is just projecting the human brain’s need for patterns upon random chance. I think this might be the
case in much of the therapy targeting fatigue in ME/CFS. So my attitude is to constantly try to do the most and be
willing to be surprised at my limitations.
I joke that the neuropathic pain
is what will eventually kill me. But that is because of its random nature. I’ve gone blind in one eye. I’ve had the
toothache to end all toothaches. I have been unable to hold onto anything with my right hand. I’ve spent endless
nights in searing agony. All due to a few nerves misfiring. I am lucky that my doctors have had the reserve to
postpone radical treatments. They could have done more lasting damage than good. Yes I lived through pain, but in
the end, the body was intact.
Of course this means that I
discount any serious pain, and don’t pursue any investigation or treatment. And I’m a guy. So I do the guy thing
and try to wait it out. Part of me knows that one day that pain will be the signal for something more serious that
a backfiring nerve. But why waste time and medical resources for the hundreds of false alarms until that day? And
why risk getting into the hands of an enthusiastic but misdirected health care provider? I know, bottom line...its
a guy thing.
2013 ended with a close to many of
the obligations brought on by our relocation. I am still challenging my physical abilities with settling in to our
home, but have the freedom to postpone or stop any project if it becomes too much. And there are no deadlines,
other than the desire to get our place to a certain point of comfort.
I’m also continuing on with
writing classes. They are done online, so I am spared the stress of a commute. It is a way to keep my mind
challenged in a fun and meaningful way. And a way to measure my abilities through interaction with fellow students
and instructors. I feel it is important to have some empirical standards in life.
I continue to fit travel into my
life with my spouse. It is a shared passion. And a time to relax and rejuvenate. I believe that getting out and
experiencing other places helps enrich my life. It gives perspective to all the other things which fill our
2014 began the same way as 2013 ended. I’ll write more about
this when the time comes for another update.
© Colin Noden 2014