So I’m strolling through Instagram last night, and come across a very young woman who is disabled with ME/
She’s popular, a couple thousand people follow her, and quite open about her
struggles with this illness. She got sick after catching a “flu” virus. A year
later she isn’t better. I stopped trolling for likes on my juicing post, and
immediately started sobbing from the depths of my soul. I know her plight so
well I want to scream into the loudest microphone in the world! CFS
is what first got me sick. Fibromyalgia wasn’t my initial diagnosis. Chronic
Fatigue Syndrome was. And just typing the words makes me wail like a wounded
baby. Because if I knew then, nine years ago in my twenties, what I know now, a
battered and broken warrior in my late thirties, OH MY GOD, what could I have
done to salvage my lost life?????!!!!!! Is there anything I could have done to
make the last nine years not happen? Is there anything I could tell this girl, who
is so upset to be looking at her first Christmas tree after a year of being
sick? Anything I could do to aid her plight or lessen her burden or make it last
less than a lifetime?
No, there isn’t. Because I don’t know much more now, than I did then, about this disease. Christmas 2006 was my first disabled holiday. I was still living in
My family came to visit. I knew I couldn’t cook, I couldn’t even hold a knife
to chop, I was buried in so much fatigue and pain. And I don’t mean tired or overworked or exhausted.
I’m talking, “if I have to stand here for twelve more seconds I will cease to
exist, that’s how weak I am,” kind of fatigued. So I ordered takeout and set
the table. Except I couldn’t do that. I mean I could, if my husband picked up
the food, and after each piece of silverware I placed, I rested for twenty
minutes. But when my family actually arrived, all that ‘setting the table’ business left
me without enough strength to even open a bottle of wine. Literally. How do
you explain that? How do you get them to believe you, to understand how serious
it is, to recognize the world is threatening to swallow you whole, from simply
being unable to exert the energy required to set the table and open a bottle of wine?
Clearly I don’t know how. I’m a failed experiment. My personal relationships are in shambles. Literally every single person I know is either completely disappointed in me, or has given up entirely. My family is still waiting around for me to contribute to a 'reciprocal relationship'. The fact that I keep trying, unsuccessfully, only makes life harder for all of us. Of the few friendships I have left, one of them recently asked me what I needed to be happy in life. How could I do anything but laugh, and bitterly inform her happiness is such a frivolous luxury it’s no longer even in my lexicon? Who the hell, in this industrialized nation chock full of first-world problems, wants to be friends with that? Is this seriously who I’ve become? So angry and alienated from society I can’t relate to someone I've known for twenty years on any meaningful level? Why do I even engage in these conversations at all? In fact, why do I keep going at all?
And as quick as my descent into utter madness starts, I make it stop. Because if there’s anything I know by now, it’s how to survive the ugly condition of despair. How to distract myself with reason, numb myself with distraction, or reason my way into numbness. I've gotta get a grip, or my perceived reality will smack me down faster than any one aspect of my actual reality ever could. And Lord knows I've worked far too hard, been given too many second chances at this thing called life, and haven't even remotely completed what I was put on this earth to do, to let that happen.
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