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, October 22, 2013

Taking Risks In Life: Harder with ME/CFS

First, this is the longest I've gone between blog posts, but I've always promised myself that I would not blog just to blog -- that I would only blog when I had something I felt needed to be said.

August and September were by far my best months since getting ME/CFS.  They both averaged at least 3 percentage points higher on my daily health rating chart than my next highest month. That may not sound like much, but it is quite significant.

I'm sure the improvement would have continued into October if it weren't for cold & flu season.  Each Fall that I've been ill (this is only my third), a little bit of a "funk" sets in as I realize that I will be battling a continuous string of bugs for the next 5 months.  Maybe you've heard of the term "chain smoker" for people who light their next cigarette with the smoldering butt of the last, and so forth. Well, with my weak immune system, I'm basically a "chain sicker" throughout fall and winter.  The next sickness rises right out of the ashes of the last.  It can be a quite frustrating when that first cold of the season sets in and I know I'm in for a long battle ahead.

For many patients, ME/CFS puts their dreams unequivocally out of reach.  Bedridden or housebound patients have no choice to but completely reset their goals and expectations.  Their lives are profoundly and irrevocably thrown into chaos.  To them, I'm sure my problems must seem like a joke.  For those of us lucky enough (or early enough) to be only "moderately" affected, ME/CFS works differently.  It casts a cloud of uncertainty over nearly ever significant life decision.  Every decision that involves future events of any kind, from meeting a friend for lunch, to moving residences, becomes a leap of faith. Contingency plans must be built into everything.  Flakiness becomes a part of who we are (and this kills those of us who, prior to ME/CFS, abhorred flakiness.)

My wife and I recently decided to buy a new home.  We are in escrow now.  The new home is near to our current home, but with a little more room for our recently expanded family.  A tad more charm.  A little more character.

This was one of the toughest decisions I have had to make, and all because of the unpredictability that ME/CFS presents.  Without that hitch, it would have been a "no-brainer."

The new home will, of course, come with a larger mortgage payment.  This payment would probably not be affordable on mine or my wife's salary alone.  Our combined salaries are necessary.

I know from conversations with veteran patients that many would caution me against taking this risk. Taking this risk assumes that I will be able to continue working at my job, and potentially adds some of that worst-of-all triggers: stress.  Undoubtedly, the safe decision would be to stay in the current home, especially since many patients don't experience their first major downturn until around the 3 year mark (and I'm not there yet.)  And for a while, this was the plan: to play it safe and stay in the current house until I got a better sense of where my disease progression was headed.

Then the economists began saying that interest rates would likely spike in 2014, and may never be this low again.  Suddenly there was a "now or never" urgency, and I weighed the risks again.  Looking at it with fresh perspective, I figured the worst that could happen is that I am forced to quit work and we have to move back to a more affordable house.  (We are keeping the old house as a rental, so it would be logical to kick the renters out and move back).  So, there is a potential fallback plan.

What ultimately changed my mind was when I considered that there is risk in both acting and not acting on a dream.  Before, I was only considering the risk of moving and then later regretting it.  But when I considered the risk of not moving, only to discover that my health would hold steady or improve just as interest rates climbed, I realized that both options seemed equally risky.  So I might as well go for the one that gives me at least a chance at one of my dreams.

If things go wrong and we are forced to downgrade, I will accept that.

Our move date is currently set for late November, assuming escrow goes smoothly.  Now the challenge is to accomplish this move without a major crash.  I have corresponded with several patients for whom moving was a trigger for relapse.  I have already "pushed it" too hard this past weekend, even though I only packed a handful of boxes.  I am paying the price now, with a major return of flank pain and PEM. Yet it goes against every instinct I have to pay people to do things that I could do myself (like packing).  It may come to that anyway...

Thank you, as always, for reading.  If you have any moving advice, I would love to hear it.