Wednesday, February 15, 2012

A Valiant Nap

No one talks about living with Chronic Fatigue Syndrome in bracing terms of “a brave struggle” like they do with cancer and other more understood and fatal illnesses. Or perhaps more to the point: more “legitimate” and acknowledged illnesses.

So this is what I have. After a good three years of bouncing from specialist to specialist with every diagnosis from cancer to candida to allergies to Lyme to MS – all of which have proven not to be the case – I finally had several throw up their hands with a diagnosis of Chronic Fatigue, AKA we don’t know what’s wrong with you.

Not so many years ago my friend and I were young go-getters on the studio lot and we prided ourselves on our incredible daily output. We could do our own jobs and at least two other people’s jobs on a daily basis and still have time for a stroll together to the studio café. I had enough energy to go to yoga class before work and a hike after. We were focused , efficient and effective. We were on top of the working world.

One day, my friend got an email from another friend of hers who was struggling with her MS diagnosis. This friend spoke in happy terms about the good days when she managed to brush her pet rabbit. That was all she accomplished that day and it took it out of her. Unless you’re dealing with a certain dreaded rabbit with “very sharp teeth,” this seems like it would, for most of us, be a simple task taking only a few moments. My friend and I scoffed. How could her friend do so little with her day and consider it an accomplishment? Did she have any clue what we worked through on a given day?

And now. Many days I can barely get out of bed. My head spins with dizziness that occasionally makes driving impossible. The fog in my brain comes and goes and makes it hard to remember conversations or sometimes string a sentence together. On bad days there is an annoying sore throat and stuffiness that never quite gets better or worse. I call the fog/throat “The Ick” and when I feel it creeping up, I always know the rest of the day – maybe week – is shot. I often wake up with it as my companion; the obnoxious house guest that won’t move along. Those days something as prosaic as walking to the kitchen to feed the cats makes me want to cry with its immensity.

Staying up past 9pm is a pipe dream and creates days of painful recovery when I do push it. Some days I get out of bed just in time to go teach my classes and return home as soon as they’re over to get right back into bed. My to-do list grows into an unmanageable mountain before me. I just can’t. To put it in what I assume are relatable terms: the tiredness feels like the mid-afternoon crash after an all-nighter with no caffeine to rescue you magnified by ten and nothing to make it go away. And you’re in the middle of an important but boring, long meeting and just have to focus. And you feel flu-ey minus the sinus symptoms. That’s what the bad days are like.

And some days I’m fine. I feel smiley and energetic. Not run-a-few-miles energetic like I used to be, but get up and function like a normal-ish person. On these days I get excited and plow through as much of my list as I can, knowing I may not have another day like this anytime soon. These days friends smile patronizingly and assume I’m faking on the bad days.

That’s the worst part; the unpredictability. I never know when I’ll be good or bad. I try to make plans but I often have to cancel last minute. So my friendships suffer. And that’s the worse worst part; the toll on relationships. Some mornings I’m up to a brief workout. That same afternoon I’ll get The Ick and have to cancel plans and I can hear that “but maybe if you hadn’t worked out this morning…” just under their understanding coos and promises to make plans again soon. But I know there is no cause and effect. It just happens when it happens.

Because what I have is not often recognized as a real disease, people often think I’m faking it, or being a baby, or that it’s not really that serious. “You don’t look sick,” they tell me. On one hand, that’s a compliment. On the other hand it would almost be easier if I had big oozing sores I could point to and say “no, see, it’s real.” Because people expect me to be healthy, I’ve gotten really good at faking health in short bursts. It’s easier than talking about it and seeing the looks on their faces of pity, skepticism, and rarely, empathy. My students have no idea that I often collapse after class. One day The Ick hit me hard just as I was leaving school. I crashed my car into a concrete pillar. I made it home sometime later in tears with shaking hands and a nice deep dent in my fender.

Family eager for another baby in the clan ask when my husband and I are going to get on with it. I smile and shrug. The truth is my body cannot support a pregnancy now. We just hope that this gets sorted out (and out of me) before the few short child-bearing years I have left pass us by.

I am at long last working with a doctor who not only understands but acknowledges what I have and can help me. She’s working with my body to get the root causes routed out and restore my immune system and energy. Thanks to her I have more good days and bad now. But I’m cautious. When the bad days hit they are a stern reprimand against taking anything for granted.

So, valiant fight against a killer? Maybe not but I certainly struggle to maintain a quality of life punctuated by small accomplishments and lots of naps. I’ve learned to be gentle with myself which was never part of my skill set, born as I was to be a Teutonic task master pushing myself harder than any coach ever could. I’m learning to be gentler to others. A friend’s sig file of that famous Philo of Alexandria quote: “be kind, for everyone you meet is fighting a great battle” has special resonance for me now. With that particular brashness of youth and health, I used to think that anyone who didn't accomplish as much as I did daily was just lazy or stupid. Now I understand that my former output level was a gift that I did not honor.

My friend's friend with the bunny doesn't know me but a part of me wants to write to her and tell her I understand now. I'm so sorry I ever mocked and discounted her struggle. It's been the most difficult object lesson of my life. And I am bravely struggling with is whether the world thinks so or not.



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