I DON'T SPEND my days lying on the floor now. I do things, which is lovely. It is a great pleasure to blast the radio on the way to the grocery store, or walk from a parking spot near the lake to the gym, where I yoga and sauna.
It is difficult, then, to explain how Pain infects my life. So many of my dreams and ambitions feel stunted by Pain. One might suppose the operation of Pain on my life would be logical, a static set of limits, within which I function freely. The truth is more chaotic. Pain can overwhelm, even when it's not at its worst. Everything becomes hard. Thinking becomes hard. At some point Pain becomes a sickness. It's not just discomfort felt in one place; the whole body becomes incapable, lethargic, like when you can't run or speak in a dream.
There are things one must do in a day, in order to maintain a life: hu$tlework and dishes and errands and the rest. When Pain is bad--shit, even when Pain is only kinda bad--small tasks become stressful burdens. When Pain is bad I expend much mental energy on task triage: which things absolutely must be done today and which can be safely neglected? Many of those neglected tasks are things things I really wanted to do. Seeds I wanted to plant. Outings I wanted to take.
Variable disability is confusing. It's damnably confusing to me, and I assume it is confusing for those who know me. There are many cycles of reinjury and repair, running over decades, years, weeks, hours, overlapping and conflicting. What is possible one week offers only conjectural clues about what will be possible the next week, never mind many weeks hence. If a friend sees me out and about one week, will she be offended when I say I'm unable to visit her the next?
EACH TIME I drive or walk or dance or sit I withdraw from a modest account. Because I can do any of the above activities I am sometimes tempted to just do them, and skip the usual neurotic calculation of what I can 'afford.' Then come the overdrafts and the penalty fees. I have to go back to doing nothing. My house becomes a mess and my friends have to bring me groceries.
Most people have a natural tendency to urge me toward activity. Usually, I think, they have no idea they are doing so. It's just that activity is the normal mode of many people; inactivity makes them twitchy. I tend to feel embarrassed pointing out that I can't, so I fake ability pretty often, especially with people I don't know well. I'll sit up for a while and pay later, when they're gone. Alone, or with those who know me well, I am safe. No pressure.
I can pass for able-bodied, very easily. So if you are wondering why I don't acknowledge more freely to those around me what my limits are, well: I'd rather be mistaken for fully able. It's nicer than being worried over, pitied or treated like a child. It's nicer than watching someone speculate why I have not managed to fix myself. I never consciously decide to pretend to be something I'm not. It's just pretty fucking tempting to let my able-looking body speak for itself. Do I really want I have a shitty spine to be one of the first things a person learns about me?
I probably ought to flaunt myself, Chronic Pain Barbie-style, and say, Take me as I am, world! But I suppose I'm often too lazy or cowardly for that. Pain itself is tiresome enough.