Sunday, June 23, 2013

On pacing myself

No, no I'm not talking about walking to and fro ala an expectant father in a mid-century hospital waiting room, anxiously awaiting the congratulatory pat on the back and obligatory cigar. 

I'm talking about this definition of pace-
a : rate of movement; especially : an established rate of locomotion
b : rate of progress; specifically : parallel rate of growth or development
c : an example to be emulated; specifically : first place in a competition

If you have a chronic illness (i.e. Multiple Sclerosis, Lupus, Ehlers–Danlos syndrome, Fibromyalgia, etc), there is a limited store of energy you start with every day.  Like a full tank of gas, or as it is explained in the most poignant and well-thought way, the spoon theory. In summary: everyone has a certain number of spoons doled out to them signifying the amount of energy he or she has.  One activity equals one spoon - that spoon is taken  from the handful you've been given and not returned.

My problem is that I usually wind up with a negative spoon count.  Almost twelve years since my diagnosis and 14 years of symptoms and I still haven't learned how to pace myself.

Here's how it goes: I'm out running errands.  I feel great.  I keep going.  The boomerang of tired doesn't slap me in the face until later that evening.  Or the day after that.  And sometimes it takes days to recover.

All activities are interchangeable - running errands, taking a shower, cooking dinner, doing the dishes, getting the scooter on and off the car, getting dressed, walking up and down the hallway.  What I do doesn't matter.  It's the physical action, of whatever, that eats away at my desire to do anything. Because ultimately, anything makes me tired. Even sitting at my desk all day placating clients, sending the same emails and running the same reports I've run for the past seven years is mentally exhausting.

How do I combat that?  Rest.  Oh yeah, that.  Which basically translates to me being holed up in the house while the world is happening outside and all around me.  You want to talk about feeling left out?  And what ultimately happens is that I get stir crazy and bored, only to wind up doing the same things that made me need to rest in the first place.

What else can I try?  Drugs, caffeine, Red Bull.  No.  Feeling tired and jittery simultaneously is such a bad combo.  Don't try it.

I like my independence - even the relevant degree that I have.  My scooter, lift and hand controls have saved me in that regard.  But there's still the chance of a thunderstorm soaking me to the skin as I move at an infinitesimally slow speed getting the cover on the scooter and then hobbling my way to the driver's seat.  And that's just one of the daily details that zaps any bright-eyed bushy tailed-ness right out of me  Let's not even include emotional stress, highs or lows.  I lost a friend last year and the memorial(s) I attended left me drained. Even the things that make me deliriously happy have a similar result.  Ex: Seeing my favorite band of all time for the first time in thirteen years left me in bed recovering the next day.  

What's a girl to do... 

Solution #1: this beauty.  I can honestly say I never thought I'd be so stoked about a minivan - a $46,000 minivan, at that.  Mine's silver and after almost a year of working with Vocational Rehabilitation, it is so close I can almost reach out and touch it.  I'm excited about pressing one button to open the side door and watch the ramp ease down onto the pavement so I can roll right in and step into the driver's seat.  Man oh man, the amount of energy that will save me.  Not to mention the pressure off of my lower back and hips which have been in chronic pain since my miserable failure of a month-long dog experiment in January of this year.  (In short: I wanted a dog.  I pushed for it.  I got him.  I couldn't handle it.  He's with a great family now.  I miss him.  My body is worse for the wear.  In other words, a terrible decision I will never live down.)

Solution #2:  meting out my time like making sure I have enough ketchup packets for a serving of french fries.  It's a silly analogy, but it works. How many ketchup packets/spoons, et al. do I get for daily tasks?  This doesn't include daily grooming or meal prep without which I would be a greasy-haired, malnourished runt.  I do need to take pride in my appearance and give my body fuel.  And working is also out of the equation. My mister can help with dinner prep and grocery shopping.  I wash/dry/fold laundry and he puts it away, which requires the biggest effort.  House and lawn are cleaned and maintained by outside help that we pay (very reasonably) for.  And it's worth every penny.

What's left, you ask? Band practice, physical therapy/exercise, social events, family time, church.  It's going to have to go down like this: one major event a day.  If two are coinciding on the same day, one has got to give.  I hate it, I feel like I'm sacrificing parts of my life.  But if I don't do this, I will pay for it.  

As far as the emotional stuff, I just have to take it as it comes.  I have no control over that.  I know I can control how I choose to react.  But, I don't want to numb myself with medications to the point where I feel nothing.  This is not a scenario where "better living through chemistry" applies.

Welcome to to my world.  It's kind of unfair. That's obvious.  This is not a result or consequence of any choices or decisions I've made.  This hammer came down fast and hard and continues to come at me every. single. day.

I can unabashedly admit that I get a giant pang of jealousy when I hear tired mothers complaining about how exhausted their abled-bodies are from caring for their beautiful miracle children.  Or how exhausted someone is after running a marathon.  Pssh, I run marathons every day just by completing the simplest tasks.  And I have settled with the constant current of heartache that I will never have or be able to care for a child.

Everyone as their relative sadness, their cross to bear.  I am no means claiming the prize for self pity. I would refuse it if handed to me.  I do let myself fall into pockets of despair more often that I choose to admit.  Is it justified?  I think so.  Maybe just not as often as it has been happening of late.

It is what it is.   I'm trying with every molecule in my being to make it work.


Is it working?


  1. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

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    BiPAP Machine