Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Saturday, January 2, 2016

2015 was first year my health regressed

                                                          Quantifying the Regression

Ever since I first became ill in 2011, I've been keeping track of my daily health rating on a chart.  I try to use certain benchmarks to ensure that equivalent level of health get the same rating from month to month and year to year.

At the end of each month, I calculate an average for the month, and and the end of each year, I calculate an average for the year.  I have steadily improved with each year from 2011 to 2014, with a particularly large improvement in the average of 2014 over 2013.  However, 2015 was the first year that had a lower average than the previous year.

Overall, this result isn't too surprising.  When I first became ill in 2011, it felt like there was nowhere to go but up.  (In reality, that's not completely true -- many of my fellow patients have shown me that I could be much worse.)  But the point is, the more one improves, the less room there is for additional improvement.  I knew that eventually I would have to, at the very least, level out or regress slightly.

The good news is that 2015 was still my second best year out of the 5 I've recorded, and the average was much closer to the 2014 high than the second highest year of 2013.  So this is all good news if I can keep from backsliding further.

Explaining the Regression

Explaining the regression is more difficult than quantifying it.  Until April, the year of 2015 was on pace to be an even better year than 2014.  March, 2015, was my best month ever.  I almost felt like a normal healthy person that month.  I was beginning to think that I would soon be considered "in remission."  (By some people's standards, I already am in remission, but not by mine.)

In April, my health started to regress.  Two things happened in or around that time frame.  One was that I began to cut back on some of my supplements, at the recommendation of my new doctor.  The other thing was that I had a stressful arbitration at work.  Is is possible the stress from the arbitration triggered the regression?  I doubt it, but it's a possibility.  

My symptoms seem to evolve slowly over time.  In 2014, my main non-PEM symptom was groin pain.  That issue was mostly resolved by early 2015.  In the second half of 2015, my issue became chronic shortness of breath (SOB) and post nasal drip (PND) (always together.)  Another explanation for the lower rating this year might be that I couldn't ignore the SOB as easily as the groin pain.  With the groin pain, I often wondered if it was even related to my illness.  Some days, even with significant groin pain, I rated my health highly.  SOB on the other hand, more directly affects one's daily activities, so it was more likely to reduce my daily rating significantly.  

I continue to explore an explanation for this SOB and PND through a pulmonologist.  I will update those results in the coming weeks.  

Where Do I Go From Here?

I feel perhaps more confused now than I have at any time since my "acute phase" in 2011.  I have a diagnoses of Lyme disease, which is questionable.  There are many different directions I could go from here, but I don't know exactly how to proceed.  In November, I started adding back in some of the supplements that I had cut out earlier in the year, particularly ImmunoStim (an immune modulator) and B Complex, among others.

My plan is to continue to try to confirm or rule out the Lyme diagnosis.  At the same time, I will try the herbal tinctures my doctor recommends.  The question is: how long do I give these Lyme treatments when I'm not totally certain Lyme is my problem?  To be honest, I don't have a plan for that right now, but hope to have one by the end of January.  In other words, my only plan right now is to make a better plan.

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