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

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

Monday, December 24, 2012

What a week! (Cold weather and CFS - a personal update)

It's been one of those weeks where I look back and think, "Patrick, you're pushing it too hard.  You need to learn to cut back on the activities."

Last Saturday, my wife wanted to take our daughter to the local zoo.  At first I declined; my body was warning me that it needed rest.  I said they should go without me.  But then the thought of missing my daughter's first trip to the zoo sort of became unbearable and I changed my mind.  I figured, "I'll just sit down as often as I need.  We'll make it a leisurely stroll through the zoo.  No big deal."

My daughter barely blinked as she stared at the exotic animals, particularly the hog-sized bald eagle.  She's fascinated with birds.  Her mother and I, it seemed, were more content watching her watch the animals.

It wasn't the walking that got me so much as the weather.  It was freezing by Southern California standards--48 degrees--and I made one of the cardinal mistakes a CFSer can make...I went out underdressed.  And to make matters worse, the zoo had a policy (probably for liability insurance reasons) against selling hot beverages of any kind.  Damned lawyers!

I made it through the day without crashing, although I shivered through much of it.  By the next morning, still feeling somewhat robust, I thought maybe I had gotten away with "the great zoo caper"....until around noon.  I went from light housework to couch-locked in the span of a half hour.  The crash hit hard.  

And boy did this crash have legs.  It just went on and on all week.  Before this crash, I thought maybe I'd passed the stage where weeklong crashes were possible.  It turns out I just needed to push myself a little harder.

My work schedule didn't make the situation any easier.  (Here I'll insert the my usual acknowledgement  that I'm indeed lucky to still be able to work. Many of us aren't.)  In one of my cases, I'm up against a team of lawyers from South Florida whose ethics have always seemed questionable.  Last month they filed three large motions on a date that would ensure all three of my oppositions would be due on Christmas Eve.  I guarantee that was not a coincidence.

Planning ahead, I made it my goal to finish and file all three oppositions by Friday the 21st so I could enjoy the four day holiday weekend.  Not to prolong the suspense: I did it, but last week was fairly miserable.  While I'm lucky that brain fog is not one of my usual symptoms, working so hard while physically crashed was brutal.  I was a cranky, angry bastard by Friday afternoon and I may owe one or two of my coworkers apologies.

We (the family and I) have now returned to my "ancestral homeland" about an hour up the coast from our house: my parents' house.  We're here for four days, and it's a little like regressing to childhood.  I take long naps on the couch and pretty much just watch football and enjoy my family's company all day.

My mom, who knows about my diet from reading this blog, secretly purchased the same "Low Carb Gourmet" cookbook that my wife uses and is making a few paleo-friendly dishes for our big Christmas dinner.  My brother is giving me a good-natured ribbing for being "difficult."  But, hey, I didn't ask for that.  But I'll certainly take it!  Just wait until I get my hands on the pumpkin chiffon stevia pie.

My brother and his family are here from San Francisco.  This is the first time that my daughter (16 months) and his daughter (23 months) have spent any significant time together.  They toddle around from room to room, following each other and exploring all the knick-knacks of grandma and grandpa's house; a couple of curious little two-foot princesses.  I think (hope) we're watching the beginning of a life-long bond.

With that, I want to wish everyone Happy Holidays.  Stay stress-free and warm and enjoy whatever it is that makes you happy this time of year.


  1. Sorry to hear about your crash. It happens to many of us around this time of year. Have a Merry Christmas and rest up!

  2. I had to respond to your blog, and on enduring the 48 degree day. Here in MN we are at 6, and I went ice fishing yesterday. Actually a good time, and not much work (sitting in a chair in a heated hut)thankfully. Quick update on my recommended treatment...cortocosteroid IV, 3 times, once at the beginning of each month Jan-March. Meant to re-set the immune system and hopefully shut off production of this one anti body. Doc says that if this doesn't do anything, then my immune system is not to blame for all of this. Oh, let me know again how amantadine did for you. Seeing what others have success/failures with is so valuable. Stay warm Patrick!

    1. Haha. Yeah, when I was writing about that 48 degree day, I thought, "I better clarify my understanding that 48 is really not very cold." I guess I forgot. 48 is only cold to us Southern Californians. We think we can get away with going outside in T-shirts and flip flops year around, and that's not always the case. You take me outside in 6 degree weather and I'd probably lose an appendage to frostbite. Glad you had a good time ice fishing though. I'll have to try that some time.

      I haven't heard of cortocosteroid IV...but I plan to look it up. I hope it works for you.

      Amantadine did not really do anything for me. I tried it for a month with no noticeable benefit, and my doctor said that if I didn't improve after 3 weeks to give up. So at least that's another thing I can cross off my list.

      Let me know who that cortocosterioid works out.