Thursday, June 16, 2011


Having felt fairly good this week, I am very bummed to be here again....that place we land when we "crash" from over-exertion.  Two hours at the park yesterday with my kids right after a doctor's appointment?  Something I ate?  Bickering with my husband?  Writing to my lawyer?

Most likely that last one.  It's a doozy.  I sent comments on my notice to file for my formal EEO disability discrimination complaint.  Several months into the process and it still seems sureal. 

But it is very clear to me that my recent improvements have come from a complete seperation from work and finally being isolated from the needless conflict.  Today, though was a bummer....I had to put myself back into that mental space long enough to write out my comments.  And having recieved the notice last week, I've had several days now for those thoughts to creep their way in.  Today was the first day in a while that I couldn't meditate my way through it.  I thnk I was too tired by then, AND I know that drinking even part of a latte was a mistake, for the caustic chemical effects and the crash. 

It was so warm and nice smelling, and I had all of stronger latte earlier this week without much harm.  But today I should have known better.

So here I am.  Blech!

I would love it if tomorrow turned out to be a new day, rather than a continuation of this (pain behind the eyes, headache, monster-sized irritability, neck stomach pain, no other muscle pain....but I'll stop there so I don't jinx the good parts).

This hypnotherapy sample from youtube usually sets me into the perfect place for yoga, more meditation, or moving on with my day.  I love it and it has helped me a lot (though even this clip couldn't really penetrate today).  If it doesn't work, search for "awaythroughcfs" on youtube.

Tuesday, June 14, 2011

My CFS, Part 1

As fellow sufferers know, there is a beginning that you can point to for this illness, but only "sort of".  There are too many backward pointsplaguing the back of my mind that could be related or causal to really feel entirely certain when CFS (Chronic Fatigue Syndrome (stupid name)) truly began.

The day it felt like it started I was in a tiny tributary of the South Fork of the Flathead River for work, walking up a stream to tiny for the birds we were looking for to be present.  It was easy walking, as streams go, but less than a mile up I was a different kind of tired.  I had been kinda tired the previous day, but there had been more reason, plus I'd been recovering from a different illness that I hadn't fully bounced back from.  But this particular day, heading back down the stream, instead of scanning the brush for bears and looking for tracks or snakes along the shore, my mind was watching for any potential spot where a human could lay down.....a sandbar, a log, relatively comfortable looking rocks.  Not typical on an easy-walking day.  When I got back to the main river I was ready to ford it right there so I could get to our trail faster....not nearly as safe a spot as where we had crossed to get there.  I was functioning safely enough to listen to my colleague, who tactfully suggested I not do that.  Half way up the very steep trail to our truck, it was very clear that I needed to see a doctor, and I very distinctly remember how appealing a specific moss-covered log across a little ravine looked for taking a nap on.  Something was very clearly not right.  I was safe for hiking and safe for the drive back to my office, but something wasn't right.

Before that day....
I've had sleep apnea for who knows how long, and sinus issues always.  In early 2010 I had surgery for my deviated septum and over-sized turbinae and my should-have-come-out-decades-ago tonsils.  I never really felt like I bounced back, and in May 2010 (amidst considerable work stress) I woke up one morning with Bell's palsy (partial facial paralysis, usually temporary, probably caused by a viral attack to the 7th cranial nerve).  After five weeks of rest, I returned to work with my face almost entirely recovered and my energy levels improving.  By the end of summer I was back-sliding and doctors weren't sure why (my face was fine but my body got weaker instead of stronger).  I knew something was wrong, and began the months-long series of tests that led to my CFS diagnosis.

This is, of course, the bare bones, non causal guessing game version of the story.  But as for most patients, I'm sure, there's too much to tell at any one time.

I kept working part time from home, with mostly support from work.  Tragically for me (since I loved my job), the support of those with the most power over the situation ended abruptly at the end of January, just as I was experiencing dramatic improvement.  That improvement was sadly reversed by a traumatic hostile work setting that I still can't get my head around.  I have continued to recieve tremendous support from numerous other management and non-management colleagues (in general and in the form of a humbling amount of donated sick leave), and I have had my Union (especially our Union President) firmly by my side through this entire ordeal. 

Sadly, As the back and forthwith management escalated, my health plumeted, and I am still coping with the impacts to my health and with the anger I feel at having such amazing progress taken from me.  I am keeping as seperated as I can from the situation currently so that I can gain at least some ground toward recovery, but I will have to bear some exposure again now as I proceed to the formal phase of the EEO disability discrimination complaint process.

Meditation and yoga are helping me tremendously, as several months of intense stress and a dramatic and tumultuous conflict are all far above and beyond what I can safely handle with this disease.  I feel very much as though getting into a setting that will really allow me to recover is not just necessary for recovery in the long run, but also necessary for my ability to function at or at any time in the future.

I was an active person with a part-office, part-outside job and almost entirely outdoor, physically oriented hobbies.  I love to run and hike and cross-country ski and I love my time in the woods as a biologist.  I have  not been allowed to exercise more aggressively than light yoga in over a year now.

After months and months of harassment I have put myself in as much of a bubble as I can, and I have been left alone for the last few weeks.....which has made a world of difference.  I am out of bed more, I'm driving more, and I'm much better able to take care of myself and my kids while my husband works.

I am trying to find a balance between my hopes for recovery and my ability to accept and cope with this illness.  And I'm learning to let go of the details of the terrible mess my career has become while still doing what needs to be done for some amount of justice to occur in the end, if that is possible to achieve without losing what little I have of my health again in the process.  This disease may be unavoidable, but my decline over the past several months would have been avoided had multiple laws and policies not been ignored.  I love my job and my life, and while there is no chance for restoring what I had previously in its former state, it is worth attempting some degree of a positive outcome.

The life I'm missing....a couple of pictures of my former work life

Lyme status in Montana (officially?)

As far as I've seen, it's easier to get treated for lyme disease in Montana thatn to get diagnosed or thoroughly tested.  My doctor, I'm certain, would continue further if I brought in compelling evidence.  Which I think is a decent position for her to take.  There were only so many tests I wanted following my Chronic Fatigue Syndrome diagnosis, once she felt we'd cleared all the remaining questions.

But I have so much in common with lyme disease patients (aside from my current recovery) that it has remained a lingering question mark.  Bell's palsy, for example, can be a symptom of Lyme disease.  And I did have a tick on me within a month prior to Bell's, and a red rash on my scalp within a month after.  Although there was no evidence of a bite, there is often no evidence of a bite.

When Lyme disease had not yet been detected in Colorado, a Forest Service employee (as per the movie Under Our Skin) went in to a doctor with a ring shaped rash, a tick bite, and the tick in a jar.  It still took hime two or three years to get diagnosed.  So the idea that lyme is a possibility is not so far fetched.  Montana doesn't have lyme disease because we're not testing for it, though we're not testing for it because we 'don't have it'.

My daughter's homeroom teacher (a junior high science teacher) has helped at least two or three local people get diagnosed due to her familiarity with the symptoms through her son (who almost died of lyme disease).  In one of the cases, a student went home from school talking about ticks and lyme disease to her mother, who had been sick for months or years but hadn't had any luck figuring out the cause.  When her daughter came home describing her symptoms right on the nose, she got tested, diagnosed, and treated.

Many people post in the Bell's palsy and CFS forums I read about their overlapping lyme symptoms, or about how lyme treatments are going.  The two are reported to be indistinguishable by most methods of testing, but that is not an agreed upon fact.  There is considerable politics and contention surrounding the topic.  If you watch Under Our Skin and follow up with your own research, you come away with a pretty strong acknowledgement that some conspiracy theories are just not so easy to disprove.  Some things sound unbelievable and far-fetched because they are attrocious, not because they are untrue.

So, while Montana does not have the right kind of tick, and therefore does not have lyme disease, it is not really disputed that we may have a Lyme-disease like agent adapted to local ticks, which an eye opening article refers to as a possible "cousin" to Lyme.  A similar article citing the same source (Epidemiologist Todd Damrow) describes a patient with the 'mystery illness' having been helped by medication. 

Other doctors support the possibility of lyme disease in Montana and report lyme positive patients who haven't traveled outside of Montana (also noting that insects are not the only transmission method).

Although these sources are all clearly of the same mind and possibly drawing conclusions based on the same general influences of thought, this certainly does not discredit them nor those influences, nor the validity of their doubts.  In a addition to not looking for lyme disease here, reporting may also be flawed, and seems likely to be, at the very least due to the fact that CDC reporting standards are based on east coast lyme disease.

Officially, we 'don't have lyme' in Montana.  Realistically, the degree of certainty with which patients with lyme disease similar symptoms are told they must have something else does not seem at all justified.


I am a novice to meditation and fairly ignorant of Buddhism, aside from sharing the generic generalizations that most of the western world probably shares (peace, chanting, an acknowledgement of wisdom and tranquility without much knowledge or first hand proof of these attributes).  The buddhist analogy for the word renunciation that I just read fits so closely with what I am beginning to experience internally, however, that I wanted to capture it before it flitted away (though I may find later that my ignorance of buddhism has led me to a peripheral or inaccurate interpretation of the concept).  I hope to experience this in a more physical sense, too, when I step free of CFS.

From an article on letting go (

"We can see the Buddhist emphasis on what is gained through letting go by how the tradition understands renunciation. While the English word implies giving something up, the Buddhist analogy for renunciation, is to go out from a place that is confined and dusty, into a wide open, clear space. It is as if you have been in a one room cabin with your relatives, snowed in for an entire winter. While you may love your relatives, what is gained when you open the door and get out into the spring, probably feels exquisite.

One of the nice things about letting go into something is that it has less to do with willing something or creating something than it does with allowing or relaxing. Once we know how to swim, it can be relaxing to float by allowing the water to hold us up. Once we know how to have compassion, there may be times when we not only let go of ill-will, but also let go into a sense of empathy. Letting go of fear, may then also be resting back into a sense of calm."

There are all types of directions I could take this line of thought, but as I am regaining my powers of concentration, I feel that baby steps are the right approach, so I'll let the idea rest for now in its own form.