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?

Wednesday, April 3, 2013

A Day in My Life

So, what's my day to day life like? Not nearly as cool as this.

I wake up, stretch my legs (kind of a pointless venture, as they are in constant protest against bending) and hobble my way down the hallway to the bathroom.  Do my business and then head into the kitchen to make some coffee.  Imagine how much longer it takes to put a pot of coffee on when you only have one hand free because the other hand is holding on to the counter top for support.  I can get a good 5 to 10 minutes of standing in before my knees start to buckle and luckily the coffee is done by then.  So I fix a mug (with a lid) and craftily maneuver my way to our home office, my mug of coffee sitting on my walker tray while I walk down the hallway in an ungainly lurch ever so slowly so I don't slosh any hot coffee on me or our wood floors.

Then, I gulp down the myriad of drugs needed to counteract the symptoms associated with my diagnosis.  Drugs for anxiety, muscle spasticity, leg strength, walking speed and bladder issues.  And a bunch of vitamins, too.  What the heck, let's take 'em all.

I am lucky to work from home.  When I had a daily commute, the energy needed to get dressed and get out the door required me to rely on a drug called Provigil (basically speed) to get me through to the end of the week.  I got off that train when I got this job, which allows me to contribute to the household in a professional capacity without running my body into the ground on a daily basis.

The next 8 hours involves sitting at my desk, interrupted by many, many trips to pee.  Because of the interrupted signal from my brain to my bladder, I have no warning.  When I have to pee IHAVETOPEEOHMYGODI'MGOINGTOPEEMYPANTS.

At some point, I get dressed.  Getting dressed means sitting down and grabbing each leg to put them in a pair of pants and standing up just long enough to wrangle zippers and buttons before I smack my booty back down on a chair. Don't get me started on the frustrations known as wearing tights, leggings and/or spanx. Those are events entirely unto themselves.  Everything is done sitting down: getting dressed, hair and make up - all the necessary prep and primping that being a girl involves.  I have learned over the years to avoid clasps, buttons and earrings with posts at all costs because the loss of dexterity in my hands make them nearly impossible to wear.

Next, I make my way out the door, strategically planning for all of the things I need to grab before I go outside and then (of course) making a final stop to pee before I head out.  Leaving my walker by the front door, I clumsily execute the path to my car (only after my husband thoughtfully turns the car around so the driver's side is closest to the door).  I take a few ginger, precarious steps to head  to my carport, holding on to the railing, then the garbage can and then kind of falling on my car to open the door, like I'm leaning in to do a push up.  I get into the car using the grab handle and pick up my legs to swing them inside. Using hand controls to accelerate, brake and turn the wheel - I get to my destination: physical therapy.  I  waddle to the back of the car and wait a mind-numbingly long time for my scooter lift to lower to the ground so I can ride inside.

Leg press machine, practice walking with one crutch, balance and core exercises - and one hour later, I'm exhausted.  I head down the elevator back to my car.  Oh awesome, it's raining.  Thank goodness for covered parking, otherwise I would be drenched and feeling totally defeated.  I get the scooter on the lift and wrangle a cover on it so it isn't completely ruined.

Once I'm home, there's dinner to worry about. Since I can't traipse all over the kitchen all night long, I carefully assemble all of my ingredients - down to the measuring spoons - and get started.  I sit on a stool to cook at the stove top and use my one handed technique to get things in and out of the oven while I hold on to the counter top for dear life.  I'm always afraid I'm going to lose my grip and fall into the oven.  I have a picture in my head of falling on the open door and letting out a ripping scream of pain. Ridiculous, I know.  But it could happen...?

Dinner's ready and Keith comes to the rescue to carry our plates to the living room.  And my drink, too.  After a little t.v., it's time for a shower.  Can't remember the last time I showered standing up.  My balance and leg strength make showering a dangerous pursuit; that's what my bath seat is for.  Every time I get out, my eyes are completely bloodshot from the nonstop stream of water hitting my face. If the water was too hot, I have to sit and cool off before I go anywhere - heat + MS = a bad scene.  My legs turn to Jell-o.

On the weekend, there's errands and church to think of.  Target and Whole Foods = lots of stares and kids asking their Momma what happened to me.  Handicapped stalls are usually occupied by said moms with said rug rats, or just jerks who like the extra space.  At church, I have to make sure I sit in the "handicapped" section so they bring me communion - otherwise I have to head all the way around to the center aisle, jump the line and make a big ol' scene.  Oh, and at the grocery store I can't buy too many groceries unless I park my scooter at customer service and ask them to ride the Andre the Giant sized scooter to me that has no turning radius and makes that awful beep when you back up.  Fingers crossed that it's charged and it's the one good scooter out of the 5 or 6 they have. Once I get my groceries home, how do I get them inside?  Very carefully - sometimes in 3 or 4 trips.   oof.

Bars, restaurants, clubs: are there steps? Are they accessible?  What about the space between tables - too tight for me to fit through?  And if we go to a party at someone's house - do I use the wheelchair, scooter or walker?  Are there steps to get inside?  Is there a bathroom on the first floor?  How crowded will it be?  Will we be inside or outside?  No mingling for me - I just have to find a seat and park it - hoping people will come and talk to me.

Yes, I am complaining.  But why?  When I was able-bodied I took the simplest things for granted.  It's a humbling thing to constantly ask people for help.  And they do, without blinking.  I have the best kind of friends.  Brandi to go grocery shopping with me.  Vanessa to drive 45 minutes from her house to mine, bringing me dinner when she knows I'm too tired to cook.  Kim to deliver hooch when I need a drink.  And the countless other friends who don't even think twice and jumble their way through my unclear directions for getting the scooter on the car, bring dinner, do the dishes, set up my gear before a show, carry my drinks etc etc etc. And Keith, my rad husband.  It doesn't go without saying, so I'm saying it.  He is the best, brightest spot in every day and helps me with pretty much everything.

It is what it is.  And what it actually is: a giant pain in the ass. Now you know why I look so tired all the time...?