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 all....now 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

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