Monday, December 27, 2010

an ode to CFS

Chronic Fatigue Syndrome (CFS) doesn't sound very serious and it's not life-threatening (unless you consider that some resort to suicide vs living any longer in the state CFS brings). It's not the same for everyone, and it can't be tested for. It's a condition diagnosed after everything else is ruled out. Most people don't understand it or they mock it or they flippantly say things like "tell me about it, I'm tired too." Hell, I don't fully understand it even though I've been living with it for 3 years now. I have fought the fact that I even have it (figuring it's GOT to be something else), until I started reading others' stories about it & realized I was indeed in THAT boat.

You look fine--there's no obvious signs of disease or distress or markings or red flags. It is a thief, dressed in black, moving stealthly, unnoticed by the outside world. Not only does it steal your physical energy, it steals your mind's energy, your motivation, your joy, your zest, your comfort, your rest. It's often misdiagnosed as depression for this reason, but any depression is a side-effect, not a cause. Some people can't get out of bed. I get out of bed most days around 4am, I go to work, I come home to the couch, I lie in the tub, I get back into bed around 8pm because I can't stand to be up any longer. And in between these auto-pilot movements & foggy thinking, I dream of so many things that I want to do, but with my gumption & motivation & zeal stolen, nothing but the basics get done.

There are days of energy, days of doing. But I've learned they are mirages; they don't last...sometimes not even for a whole day. I grab hold of these when I can, do things that have been wanting to get done, and sometimes let myself feel hopeful that I'm fixed. But invariably the hour comes...I don't know when it'll be. Sometimes it's 8am, sometimes not til 10am or just after noon, but it comes. The light disappears, the motivation vanishes, and I'm back on the couch maxed out, a fog of non-doing now filling up my head. This is the cycle CFS takes in my life--in my heart I want to go & do & be out & be seen & get heard & be happy, but my body/energy/head can't be bothered with such things. It just wants to be still, be quiet & hide. I don't sleep, mind you, it's not that kind of tired for me. I lie around, concious but unable. Like I'm trapped in a bubble filled with a haze--I can sorta see out, but I cannot get out.

I am hopeful I can break the cycle. I am hopeful I can bust through the fog & reclaim who I used to be. But it's hard when you slide back & forth; daring to hope is a vulnerable place to be, especially when disappointment is never too far behind. But I keep trying--new doctors & alternative practitioners, new treatments, new food plans, tactics, mindsets, books, therapies, theories, support & attempts. It's all I can do, here alone in this fog-filled bubble, on my couch of hope.



  1. As odd as it may seem, this is a very uplifting post. It's terrible that you have to suffer, heartbreaking in fact. But--you force yourself to see some light, and that is a truly wonderful thing. Don't let that go--don't give up that one part, as it is the most important part. Even talking about it here is important, so be glad that you are doing more than most would, and be proud of that.

    (At first I thought the post was going to be about chicken fried steak, which also would have been great.)

  2. Chicken fried steak would have been awesome! Thanks to the CFS--I can't eat CFS.