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10 Years

Posted Mar 16 2012 5:14pm
March 16 already?  Huh.  Since 2002, March 1 has been a significant day for me, the anniversary of when I got sick.  I am usually very aware of that date each year, feeling some dread as it approaches: "Has it really been X years?"  I usually write a special blog post (like my posts for my 5th illiversary and my 9th, last year ).  March 1 this year was a significant milestone - 10 years with ME/CFS - and yet, the day (and the week) passed without my even noticing.

In part, this is simply because I have been so focused on taking care of my son.  As regular readers know, he has been completely incapacitated for the past 9 months from his treatment for Lyme disease, bartonella, and babesia (two other tick-borne infections). Lately, my life has been entirely revolving around him - taking care of him (he hasn't been to school in weeks) and in the past two weeks, even trying to tutor him so he can graduate on time in June.  So, it's not so surprising that I didn't even notice my 10-year milestone had passed.

But I think the other factor is that, as much as I hate to admit it, ME/CFS has become an integral part of my life.  I often talk about finding a "new normal" (in fact, that is the title of my book-in-progress), and I think it has finally happened.  Life with CFS is now normal to me.  I have become used to living with the restrictions and limitations, used to popping pills all day, used to the routines that define my days.

Through avid, nonstop exploration of treatments, I have improved enough that I can live my life; it's not my old life, but it's my life nevertheless.  I have accepted that I may never completely get rid of ME/CFS, as much as I hate to admit that.  But I have learned that it is not the end of the world.  I am still here, still happy (for the most part), still living and finding joy in my life.  I feel hugely grateful for the things I do have - a loving family, wonderful friends, the means to keep pursuing new treatments - and it has become rare for me to become depressed or slip into despair.

I would still give absolutely anything - including my own moderate health - for my son to be well again, but we are working on that.  I will continue to be just as tenacious in finding ways to help him improve as I have been for myself.

This level of acceptance in no way means that I have given up hope of further improvements or even, someday, recovery.  I find lots of reasons to feel optimistic in the direction that ME/CFS research is finally taking, with more studies focused on unraveling the physiological mysteries of our illness and more possibilities for treatment.

10 years...yeah, that seems about right.  It is what it is.  10 big deal, just another milestone passed.  I have found a new normal, and I am living my life.
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