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

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

Friday, January 19, 2018

My 2017 in review

For those who don't regularly ready my blog, I give myself a daily rating of my overall health and keep it on a spreadsheet along with notes about changes to my treatments, diet, etc. I've been doing this every day since 2011. At the end of every month and every year, I calculate monthly and yearly averages.  The hope is that this will help me figure out what treatments, foods, and lifestyle changes led to improvements or setbacks.  It has worked sometime and other times left me with no answers.

The average of all my daily health ratings for 2017 was about a percentage point lower than 2016.  In fact, it was the third straight year of decline.  From 2013 to 2014, I experienced a major improvement in my health rating average, and the improvement was noticeable "in real life" too.  2014 was my best year, but I have regressed by about one percentage point each year since.  If this trend continues into 2018, I will be back at about the same average as 2013 by the end of the year.

I feel generally about the same as I felt in 2014 -- my best year -- or maybe only slightly worse.  One of two things is happening: One, I've simply forgotten how much better I felt in 2014 as my health very gradually regressed over the course of 4 years.  That's very possible.  It's also possible that I'm grading myself more strictly as the years go by.  I do seem to recall that I used to focus more on my main symptom of ME:  PEM/flu-like malaise.  I think in 2014, I used to rate a day highly if there was little or no PEM but in spite of the fact that I might have another strong symptom like prostatitis, shortness of breath, or kidney aches.  It's possible that in more recent years, I have started to count these other symptoms (which are all obviously related to ME) more in my daily rating.  Maybe it's a combination of both.
                                                                    ________________

In the first half of the year (February) I had to conduct a fairly stressful 2 week arbitration at work.  January was also defined by stressful preparation for this arbitration. After the arbitration was over, my health seemed to crash and I think it took me most of the rest of the first half of the year to get back on track after that.  I had a good run from May to July.  It's unfortunate, but I don't think there was any way I could have turned down the arbitration - I had to do it. 

The second half of my 2017 was defined by the onset of what I now believe is most likely SIBO.  Abdominal tenderness and bloating set in on a very specific day in early August.  I remember the day clearly.  Ever since that day, I have had bouts of tenderness and bloating on and off, but mostly "on."  Recently I had a positive SIBO breath test.  Despite the SIBO, however, my best month ended up being December. I don't know how to explain that except for the fact that I had just resumed taking phosphatidylcholine (PC), which also seems to make me feel better at first. 

1 comment:

  1. Patrick, have you explored the possibility of having Chronic Inflammatory Response Syndrome (CIRS)? A few months ago, I was diagnosed with mold illness, which is the most common cause of CIRS. Often, the two terms are used interchangeably. Other causes of CIRS include Lyme disease, a certain blue-green algae, etc.. One bit of information I've come across is that many people with Chronic Fatigue Syndrome actually have CIRS. If you haven't looked into this possibility, you might want to check out Erik Johnson's story. Here, you can get a free PDF of his recovery story: http://paradigmchange.me/erik. He was originally diagnosed with ME/CFS. Whatever the case may be, I wish you the very best and hope you recover your health. I'm still working on recovering mine.

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