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

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

Tuesday, August 14, 2012

ME proves unpredictable once again

I've been back from New York since Sunday and so far....no crash.  How is it that a day trip to the beach can sometimes lead to a soul-crushing crash, yet this 6,000 mile cross-country trip seems not to have affected me at all?  Again ME is determined to run counter to my expectations.  Maybe I should start expecting the opposite of what I expect!

I also felt relatively well during the trip, which allowed me to truly enjoy the wedding and our free day in Manhattan, not just survive them.  Don't get me wrong, ME was right there with me the whole time, but it wasn't a dominant presence.  I still had to sit throughout most of the cocktail hour while everyone else stood and mingled.  And of course, I was one of the first ones to leave.  But the point is, I made it.  And I got to enjoy the speeches, the vows and connect with my extended family.  After my wife and I returned to the hotel, I fell asleep feeling grateful for having survived the night without a crash - something I would have taken for granted  14 months ago.

The day after the wedding, our "free day," I considered staying at the hotel and recharging my battery for the flight home the following day.  But then I figured, "who knows when I'll be back in New York.  I'll probably crash when I return home anyway, so I might as well go for it."

So I went for it.

I accompanied my wife and daughter to the Central Park Zoo, where we met with old friends and their new baby.  Of course, I had to sit frequently, sometimes slowing the group's pace, but I tried to compensate by adopting the role of event photographer for the day, which I could accomplish well enough from various benches and chairs.

That night, the wife, baby, and I decided to ventured out to a restaurant near our hotel.  I'd asked the concierge to direct us someplace casual, where a baby wouldn't disturb others.  He sent us to Dos Caminos, which turned out to be a Mexican dining experience as only New York can do it.  (The food was terrible, by the way.  I truly believe that most East Coasters have no idea what good Mexican food tastes like.)

But back to the restaurant experience:  I wasn't sure if we were in an eatery or a night club, but it was anything but casual.  The main dining room pulsed with the sounds of a live DJ spinning club music.  Most of the other patrons were dressed for a big night on the town.  Most appeared to be on dates.  And then there was us: the rag-tag Californians in flip-flops...with a baby...and an enormous stroller...at a quasi night club.  I loved every minute of it.

It just felt good to be out in "the scene" again...as cheesy as that sounds.  I discovered that New York's vibrancy can be absorbed passively, but enjoyed nonetheless.  I don't know how or why I somehow managed to avoid a crash this time, but I'm not going to over think it.  I'll just be thankful.

P.S.  I didn't end up wearing the nasal filters on the airplane because I'd forgotten them when I packed.  But after reading Baffled's comment to my last post, I'm glad.  It sounds like they would have been useless against viruses and bacteria.

4 comments:

  1. My first reaction is Oh Thank God you are okay. I was worried that this would cause a huge crash. I am so very happy for you that you not only survived but enjoyed your trip! This is wonderful news. Yes, our illness is very very unpredictable. I'm doing my happy dance for you.

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    1. Thanks Baffled, although I may have spoken too soon. Something is seriously, seriously wrong today. I'm just waiting to see if this is a blip or the beginning of something truly awful.

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  2. Patrick-Wow, great to hear things went well! I just returned from a trip to yosemite park (where is was record heat) with my family, and I too enjoyed it (within limits of course) versus surviving. Pushing yourself every so often gives you a reference to work with....and to gauge improvement over time. I know that a year ago I was surviving many activities and not enjoying them as I am now, which means there has been some improvment. My wife and I even went out dancing a few weeks ago which made me feel alive again...to be out past ten p.m. and see what adults do. Ya, I paid for it the next day, but that was it. Soak those moments up...continue on!

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    1. Wow, that's great that you were able to go out dancing. I tried dancing a little bit at the wedding, but when I say "a little" I mean a little. Honestly, it was little more than standing and swaying ever so slightly. LOL. I doubt that anyone around me would have even called it dancing.

      I'm hoping that in another year's time I'll be where you are. It's good to have examples of people who have improved to look to for encouragement. Thanks Bret.

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