By Carla Lee
First of all, can we all agree that the pacing thing works?
Secondly, other than the one monk with ME who lives on a mountain in Tibet, may we all acknowledge that – in the real world as we live it – events, situations, and conditions, and people often make pacing completely impossible?
Thirdly, shall we confess this makes us cranky?
Here is why I am cranky.
Not a monk, so I have two college-aged sons. And apparently at the end of the spring term each year, they expect fairies with wands to appear, clean up their dorm rooms, and pack them up for the trip home. Fairies do not appear, again, because this is the real world.
Then there is the long trip home. And then quantities of laundry defying belief emerge and flow through the house carrying levels of contaminants that warrant Hazmat team response.
(And did I mention that my also exhausted husband put a garment in the sink to soak and then ran off to the gym forgetting to turn off the faucet, leading to a flood in the bathroom?)
Home from college, as are all their friends. Our house is now a zoo. (A loud zoo with heavy nocturnal creatures who thump about loudly through the wee hours and scream at soccer matches on TV.)
Mom and dad need to sleep, because, unlike our darlings, we are not on vacation and need to work.
Mom (me, in case you’re wondering), is now in the throes of a major (MAJOR) ME relapse.
Unable to focus, with a desperate desire to flee the house, but unable to do so because she’s too brain-fried to drive, she staggers downstairs to her home office and goes onto email to catch up on what she’s missed while hauling sons and sons-related items.
Apparently there is now an urgent work emergency and everybody’s been trying to reach her, but nobody remembered HER email saying she’d be away on the trip to college.
On top of everything else, there’s global warming. A sudden heat wave has struck the Northeast and mom cannot tolerate heat.
But hubby, who wants to have a life and sometimes desires to actually do things, has scheduled a fun afternoon and night out with another couple. Luckily they are good friends. As anyone who has ever seen someone with ME in 90-degree weather would know, it’s not a pretty sight.
There is apparently a new paper out on the experience of partners of people with this illness (or its amorphous blob chum CFS). I know this because, over the years, when the ME is particularly awful, I find it bizarrely soothing to go on the computer and check out the latest ME studies. Happily, the partners of sufferers paper is not available for public access.
I’m in no mood. I have a blistering headache. I am hot. My joints ache like the blazes. Neurons in my brain have utterly ceased communicating through synapses.
I ask my husband for help finding something on the computer I need to find to deal with my work crisis, and he patiently explains – in the most patronizing way possible – how I could be so much more productive by doing something the way he “and everybody else” does it.
Dear readers, fill in the rest.
I’ve had ME for over 9 years now. I’ve been through these spring, and winter, and summer, and fall cycles where everything pours down at the same time. All kidding aside, when life delivers these periods, it seems unendurable.
Still, the near-decade of experience has given me the following wisdom: The mudslides always come. There’s no way to pace out of them. But they pass.
As for that monk with ME, truth is Tibet has mudslides too.