I feel like my life is shrinking down to the size of a postage stamp. Yeah, my life is like a postage stamp. I made these statements to my pal Diane the other day. She paused and quizzically inquired, "You mean you feel like your life is worth 44 cents?" She was quite serious. Oh, the concrete, quantifiable thinking of an accountant! No, no, not the value. Egads, I seriously didn't want to go there. I have trouble these days seeing any decent conclusion from that line of questioning. And, is that my value to society, myself, my cat? No, no, I was talking about what I can do and participate in - it's shrinking.
Much more than most folks, Diane usually gets it. As my life has dramatically changed in the last couple of years, she's understood that plans are always tentative and that little outings are big deals now. Between the fallout from brain surgery and dealing with atypical multiple sclerosis, fatigue reigns supreme. It feels like a god that must be pandered to and delicately revered, or else.
I plan my life strategically now to avoid hitting the big fatigue wall before I'm safely home. Sometimes it works. Grocery shopping, putting gas in the car, and laundry are for the weekends. I usually plan nothing else during the workweek as working is enough of a challenge. Hopefully I've made it to the afternoon and accomplished some good work before I begin the familiar decent into a mass of buzzing and vibrating in my body knowing that soon my thought processes and ability to move will slow way down. Although each day is never quite the same. As my legs become heavy, sometimes it's like walking through molasses. Well, ok, you're right. I've never walked through molasses, but you get the idea.
I avoid scheduling afternoon meetings and dread the phone ringing at 3:30 or 4:00. Will they have an easy system use question or a fuzzy gray policy question? Occasionally I get really stuck attempting to articulate what I know. I usually use my outgoing personality to laugh it off and make a joke. However, these moments are becoming more frequent and awkward. I attempt to go home at the right time to avoid my fatigue turning into full-on staggering and slurring. And, while I'm safe to drive. Once home, I'm done. I may cook, play with the cat, or I may be pretty much leveled. If I recover later in the evening, I'll go for a neighborhood walk. I usually don't walk pretty at that point.
So many people could tell a similar story. In this context, the label doesn't matter. It's invisible chronic illness and it's relentless. Folks dealing with this often look fine, or even really good as they're probably supplement junkies. Yet they must exert an incredible effort to get through the day. Sometimes the cracks in the veneer show if we're paying attention. But overall, the struggle is invisible. I know mine usually is. This will be confirmed when a co-worker recommends the evening concert series at the zoo not knowing that doing anything beyond crashing in the evenings is a radical concept in my world. Or when they assume my funny walking is due to a knee injury even though I may have told them about my condition. I'm still working on how to respond graciously as they don't understand this world. I don't expect them to know that my postage stamp isn't that big these days.