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

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

Sunday, October 21, 2012

I try not to feel sorry for myself

My first eight months of sickness were marked by a difficult emotional coping period.   Looking back, I  seemed to have turned a corner at around the nine month mark, when it suddenly became easier to cope with my new limitations.  I reached a certain level of acceptance.  I didn't realize it was happening at the time, but I can see it now, especially when I review my old blog posts.

One of the things that helped me turn the corner was that, for some unknown reason, I stopped thinking so much about the activities that I used to enjoy.  First among those activities was surfing, but there are many, others, like jogging, drinking, yoga classes, snowboarding, and spontaneous road trips.

Well before I became sick, someone whose wisdom I value told me that "nothing in life is guaranteed." I keep coming back to that statement now whenever I'm tempting to dwell on thoughts of what I'm missing.  I try to remember that health, and the freedom to pursue superfluous recreational activities isn't guaranteed.  In fact, it's a privilege of a relatively small number of spoiled inhabitants of wealthy western countries. 

Sometimes I take this thought process a step further and remember the extreme unlikeliness of my existence here, on this planet.  There's an excellent quote on this topic from Bill Bryson's book, "A Short History of Nearly Everything."  
Not only have you been lucky enough to be attached since time immemorial to a favored evolutionary line, but you have also been extremely- make that miraculously- fortunate in your personal ancestry. Consider the fact that for 3.8 billion years, a period of time older than the Earth's mountains and rivers and oceans, everyone of your forbears on both sides has been attractive enough to find a mate, healthy enough to reproduce, and sufficiently blessed by fate and circumstances to live long enough to do so. Not one of your pertinent ancestors was squashed, devoured, drowned, starved, stranded, stuck fast, untimely wounded, or otherwise deflected from its life quest of delivering a tiny charge of genetic material to the right partner at the right moment in order to perpetuate the only possible sequence of hereditary combinations that could result - eventually, astoundingly, and all too briefly- in you.
Not only that, but I find myself remembering that, for most of human history, the average life expectancy of most humans was less than thirty years.  Even today, in many parts of the world, one can't reasonably expect to live past the age of 40.  Of course, I realize that these figures are a bit skewed by high infant mortality rates.  But the point is that, in at least one view of the cosmos, I'm living on borrowed time.  Every ounce of enjoyment I can squeeze out of life from this point forward is pure gravy.  It's bonus time.

Add to that the fact that, for most of human history and in many parts of the world today, life is/was often a full time exercise in survival.  It's hard to imagine that quality of life was too good when we (humans) were foraging for each meal, dodging predators, and walking miles for clean water.  Before modern medicine, a person was always one infected cut away from an untimely death.  Basically, life has always carried with it a heavy amount of suffering just based on the cruelties of nature (not even counting all the suffering that man inflicts on man).  This is why, I believe, that Buddhism grew out of the maxim that "life is suffering."

All this is to say that I'm trying to take life with ME/CFS in stride and put it into perspective.  Many of my fellow PWME's are much worse off--sometimes homebound or even bedbound.  I try to think of them when I'm tempted to sulk.  Or I think of those with terminal diseases and remember how lucky I am despite the challenges of ME/CFS.  Or I remember that, from a historical perspective, I'm on borrowed time and that everything from here on out is gravy.
  

4 comments:

  1. Great minds think alike! I wrote about the same thing! This week I was grieving for my old life. Most of the time I'm like you. I feel lucky to have had a good life so far. I ended up in a good marriage, with a good kid and a great job. I was getting pretty good at figure skating for a 40+ year old chubby lady. I practiced Buddhism for several years so I totally agree with the precious life idea. It is a miracle that we are born into this privileged life. It is a miracle that our bodies worked as long as they did as well as they did. Every once in a while the grief sneaks up on me though and I have a good cry. Then I go back to enjoying the stars and the flowers and even the bugs. It is a privilege to be here even if we can't move through this place as well as we once could.

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    1. Baffled, great comment. I'm glad you mentioned the part about how, every once in a while, the grief sneaks up on you. When I originally conceived of this post, I was going to explain that I still find myself feeling sorry for myself sometimes, especially during a crash. I did't want to leave the impression that I'm 100% rosy 100% of the time. I like the way you put it...the grief can sneak up on you sometimes, but then you put it away and go back to enjoying life...even if it is a different life than the one you knew before.

      Great comment. Thank you!

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  2. I think anyone w/chronic illness has a change in perspective that is needed for survival. My "acceptance" point came about 14 months into my illness, where I realized that life was not over for me, but different now. I moved from fighting it, to managing it. By doing that I actually helped myself to regain some energy. Fighting takes mental energy, and brings stress. Do I have moments of pain/sulking? Sure. I think that is normal. When you spend a huge part of your life doing something, and then you can't, your brain has memories that can activate at certain times. For me, I see someone really running hard down the road and have a moment of "I wish I could be doing that". But, I look back on 48 years of a great illness-free life and relish it for the times I had. Now we all move forward w/a different perspective on life and enjoy things that we didn't see before (or took for granted). I spend time with my daughter now that I soak up, whereas before it may have been seen as ho-hum (like taking a walk looking at bugs, etc.)I see my wife differently in a way where I know how lucky I am to have her. I know this is deep, but CFS has shed that light on me. Great insight again Patrick, enjoy your week.

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    1. Bret, great insights. Sometimes I think you should be the one doing the blogging and me the commenting. LOL.

      I hope you're doing well.

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