Sunday, June 06, 2010

Being a Crip is a Full-Time Job

I was struck today by the realization that way too much of my time every week is spent doing crip-related tasks, i.e. things I wouldn’t have to do, or could take care of a of faster, if I wasn’t disabled. 

It was my meds that started this train of thought barreling down the tracks.

I take an insane amount of drugs every day -- between prescription and over-the-counter meds and supplements, it’s somewhere in the neighborhood of three dozen pills, some liquids, and a couple of puffs of inhaled breathing meds.  Somehow I’ve managed to work all this into a four-times-a-day dosing schedule, but when you add in the time it takes for me to refill the weekly pill boxes I use, get prescriptions filled, and most of all, the time I spend waiting for meds (especially pain meds) to kick-in, I spend a lot of hours dealing with drugs. (If any DEA officials, my doctors, or my pharmacist is reading this, please note that reads “dealing with drugs”, not “dealing drugs.”  Can‘t be too careful about that distinction these days.)

The big time suck, of course, is personal care.  I feel some days like I spend half my life tending to stuff that used to take me maybe an hour a day total.  Okay, make that an hour and a half -- I drink a lot of water and have a really tiny bladder, so I’ve always made more than the average number of trips to the loo every day.  In the before-chair days, I could jump in the shower, wash and condition my hair, shave the pits and legs, get out and dry off, apply lotion/makeup/deodorant, brush my hair, get dressed and be out the door in just under an hour.

These days I’m lucky if I can get in and out of the shower in 30 minutes.  The assisted transfers from my chair to my shower bench add a few minutes in each direction, as does getting some of my gimpier body parts *cough*righthandandarm*cough* to cooperate with what I need them to do.  Even taking Navy showers, necessary both because I can’t just step out of the shower spray to soap up and to conserve water, doesn’t seem to speed up the process.  One of the things I miss most about being a walkie is the ability to take a quick, unassisted shower whenever I feel like it. 

The time spent showering, however, is nothing compared to the time involved with getting dressed and taking care of non-bathing personal care and hygiene. (Did you hear that noise? That was the sound of every ’plegic reading this simultaneously saying, “No kidding!”)  The damage to my spinal cord means it takes longer for me to get dressed and undressed (even with some help), brush my hair and teeth (don‘t get me started on the subject of flossing), and putting on make up and jewelery.  And without revealing TMI, it’s geometrically increased the time I spend attending to the call of nature. 

All that’s probably intuitive.  But what most TABs (shorthand for temporarily able bodied) don’t realize how much time and effort I, and many people who use wheelchairs, put into keeping our skin healthy.  If you’re not diligent, sitting for upwards of 12 hours a day, every day, can do some serious damage to your body’s largest organ -- pressure, friction, trapped moisture, and the most-dreaded of all for me, wrinkles, bunches, seams and elastic, are all  bombs with hair triggers.  Add to that the problems that can result when you’re not able to tell if you’ve developed a blister or cut yourself, and you’ll start to get a picture of why I devote hours each week to checking for and trying to prevent skin breakdown.  It’s worth every second I spend doing it, though, because the primary treatment for pressure damage is staying off of the area until it heals.  An hour a day of shifting my weight off of this, lotioning that, and having a look at those other things beats the hell out of laying on my side in bed for weeks, months, or even years at a time.

The rest of the extra time comes from ordinary tasks like getting me and my chair in and out of the car, preparing food, etc.  Each activity may only take a few minutes longer than before, but those minutes can add up pretty quickly.

All totaled, I figure disability-related tasks eat up almost 40 extra hours of my time every week.  Who the heck knew being a crip would be a full-time job?

I stand sit in awe of all you ‘plegics out there, especially you quads, who also hold down a job and/or take care of a family.  I have no idea how you find the energy to do it all.

1 comment:

Nicky said...

couldn't say it better myself!