Rest For the Weary?

Having a job and a family and a handy dandy dialysis cycler beside your bed can make for a demanding life.  Even after having been on Peritoneal Dialysis for a little over two years, I find myself occasionally feeling overwhelmed with the unexpected challenges that seem to come from out of nowhere.

Like yesterday morning.  I woke up to get ready for work when my alarm sounded at 6:30, disconnected myself from the machine, and stepped into my bathroom (which conveniently is about three steps away from the bed).  Now, I stopped using drain bags a long time ago, probably three weeks into dialysis, when I figured out how much easier it was to run the drain tube into the toilet and just flush it in the morning.  However, yesterday morning when my bare foot hit the bathroom rug, I stepped into a soggy, cold mess.  At some point during the night, the tube somehow got pulled out of the toilet and the fluid that drained from my abdomen was pooled up on my bathroom floor.  My clothes from the night before, left lying on the bathroom floor were saturated, the rug was saturated, and I had to use about 4 towels to sop up the rest of the mess.  Thankfully, the tube wasn't lying on the floor all night, otherwise the folks living in the apartment beneath me would have suffered some rather unpleasant leakage through their bathroom ceiling.  Lesson for the future:  Tape that sucker to the toilet from now on.

It wasn't a great way to start the day, and coming home to a bathtub filled with dialysate soaked towels, clothes and rugs wasn't a picnic either.  I found myself thinking, "Oh great! Something else to stress about."

I work part-time and I have a 9 year old son.  I'm a single mom with no family that lives close by to help out, so yeah sometimes I get overwhelmed.  Heck, I think I would get overwhelmed without PD in the mix.  So when I have days when I'm beating myself up for forgetting to sign an important form for school, or for having dishes in the sink, or for not wanting to go out with friends on the weekend, I remind myself of all the "extra" stuff that has become a part of my life as a result of dialysis.

No one else that I know woke up to a bathroom flooded with bodily fluids yesterday.  No other mom at my kid's school has to worry about throwing out 5 extra bags of garbage every week (and that's not including breaking down dialysis boxes and throwing them out).  None of my co-workers have to wake up and disconnect themselves from a machine every morning, or plan their bed-time so precisely that they know they'll be able to be up and Adam on time the next morning.  No other mom in my kid's school has ever made her kid late in the morning because her cycler (for some reason) took a little longer to finish its job and she had to lie still in bed until it finished because if she got up and started moving, the drain-pain would be excruciating.

At my last doctor appointment I bragged to my nephrologist (the ever-affable Dr. Tsai) that I am often amazed at my level of energy and the amount of "stuff" I can accomplish in one day.  I think back to 3 years ago and remember how completely useless I would feel after a day at work, and I'm amazed that I can work, run errands, decorate for a party, buy groceries, pick up my kid, go for a walk and make dinner all in one day and still have enough energy to take a shower before I go to bed.  Dr. Tsai never discourages me.  He encourages me to stay active and reminds me that keeping my life relatively normal is the best thing for me; but he's also realistic.  "That's great," he said with his kind smile, "you just need to make sure you're taking time to rest."

Rest?  Really?  I take my sleep medication at night and I usually get a good night's rest, but I don't exactly give myself permission to just spend a day taking it easy.  If I do spend a Saturday on the couch because I'm tired, I guilt myself all day about not doing laundry, not taking my son to the park, or not going to visit family or spend time with friends.  It sounded like Dr. Tsai was giving me permission to be lazy sometimes.  After I left my appointment I started thinking about my own perception of "rest" and I realized I don't know how to do that.  In my mind "resting" and "being lazy" seem like the same thing.

I realize where this perception comes from.  My mother always employed the word "lazy" whenever we didn't feel like doing something we should have been doing, like cleaning our rooms or helping her in the kitchen.  My dad referred to me as "lazy" one time when I had cramps so bad that I couldn't go help him in the garden.  My ex-husband and a couple of ex boyfriends (even the ones I dated while in the exhausting grip of ESRD) loved calling me "lazy" when I would come home drained and ready to collapse in a heap on the couch.  I've never been allowed to do this "resting" thing.  But I need to learn.

On the days I feel great, I go, go, go!  That's my Monday-Friday grind.  I work, I manage my life, I deal with the garbage and the shopping and the routine that keeps me on schedule for the next morning.  I work in a field that requires me to be giving, thoughtful and present for meeting the needs of other people but I often fall short when it comes to paying attention to what I need.

So today I am giving myself permission to sit on my couch.  I'm going to read and watch junk TV and maybe even take a nap.  Perhaps I'll watch some movies with my boy, and for lunch, we are having peanut butter and jelly sandwiches.  I vow to not let myself feel like a lazy slob because there's a load of laundry in the hamper, or because there are 4 dialysis boxes sitting in my bedroom that need to be thrown out.  I'm not going to make myself feel bad that I'm not at some festival, or visiting my family, or going out for a night of fun with my friends.  I'm going to put my feet up and pat myself on a the back for all I did accomplish this past week.  I'm going to feel good about all the "stuff" I'm going to get done starting Monday morning when my feet hit the (hopefully not soggy) floor.

If you are a dialysis patient, I hope you can do the same.  Give yourself credit for all that extra stuff you have to deal with, and for all the stuff you get done every day despite the challenges you face.  Be good to your body by giving it time to relax and recover from all you put it through every day.  Your body will thank you.  And your nephrologist will probably be proud of you as well.

Here's wishing you a perfectly guilt-free "lazy" day!