Saline Chronicles: The Dreaded C Word

compliant

 

I have a pet peeve. It is the word “compliance.”

This word is thrown around quite a bit in CF circles, especially among medical professionals.  It is used frequently in research papers, where there is an understanding of what it means.  Physicians and other researchers are very concerned that people with CF don’t always do everything that they are told to do to keep their disease and all of its various manifestations at bay.  If someone fails to do all required treatments or take all medications or exercise daily, they are coined “non-compliant.” Did I say that I hate that word?

Just do me a favor and check out your friendly thesaurus to find other words that mean the same thing.  Never mind, I’ll help you out. Here are a few:  docile, easy, manageable, meek, submissive, yielding.  In other words, spineless, with no worthwhile opinion on the matter. Now in the olden days, when Doctors were GOD (which is why I capitalized doctor), it was just assumed that one followed one’s doctor’s orders, no questions asked.  But times have changed, and if you don’t believe me, turn on your TV and count how many different pharmaceuticals tell you, the patient, to “ask your doctor if this could be right for you.”  Like it or not, patients are a very important part of the equation now.  This is a good thing (not the television commercial part…that is a very crazy and ridiculous thing).

I’m not harping on CF doctors.  I actually think most realize that the patient has very important information, like how much it is really possible for them to do in a given 24 hour period.  So why can’t we drop the word?

I have an alternative.  How about instead of the word compliance, we use “consistent.”  How consistent someone is with their thrice daily aerosols, or 250 pills to swallow, or blood glucose monitoring, or airway clearance technique of choice, or exercise, or any of the myriad other things we must do daily, sounds SO much better than “compliant.” There is no judgement in the word consistent.  It implies that we are all trying hard, but sometimes life gets in the way.  Check out some of the synonyms of my substitute word:  dependable, persistent, rational, steady, true, regular.  I like dependable and steady so much more than meek and submissive, don’t you?

What say you, CF peeps?

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The Key To The Comeback: Small Wins

So far, 2014 has not been my favorite year. Three hospitalizations in four months is a personal record that I do not want to break.  But, the good news is that I have learned quite a bit about “comebacks.”

I am writing this as I walk on a treadmill, sucking on a nebulizer which is providing hypertonic saline to my recovering respiratory mucosa.  I have to stop frequently to cough of course…that is the point, after all.  But it has dawned on me that this act is a win.  It’s a small win, but a win, nonetheless.  For the last month, my treadmill has been motionless, as I’ve either done my treatments from a hospital bed, or from my bed, or from the recliner in the living room.  Simultaneous walking was out of the question.

This is big!  I will celebrate by going to go to the gym today for the first time since mid-March (I cringe as I think of the monthly fee).  Even though I am forced to be extremely cautious with lifting due to the effects of ciprofloxacin on my poor shoulders, this will be a huge step in the positive direction.  The energy of that place feeds my soul in a way that is hard to describe.  The gym is my happy place, and I have missed her dearly.  God knows, my shriveled muscle fibers need to be awakened so that I can gain back my lost weight.

I’ve discovered that one small win a day keeps the frustration at bay (that could be a bumper sticker).  CF is frustrating.  Any illusion of control is busted at any time, with no warning. This wears on my psyche.  It taxes my patience.  It drives my worrying, monkey mind crazy. There is no way to stop the relentless progression of this disease.  All I can do is my best to slow it down.

Indeed, the only way to win is to find small victories…every day.  Some are much smaller than others.  Some are so small that I long for my old microscope to find them.  But they are there.  A friend flying all the way from Texas to spend time with me and try to help me out.  A funny thing that my son says.  A dog licking my foot.  A quiet weekend with my partner.  A walk, even if I can only go 10 minutes, is after all, a win over a hospital bed.

They add up, the small wins.  I’ll be back to my normal Julie eventually.  Or, maybe I’ll just be a new Julie, still winning.  Because I won’t let CF beat me.  As long as I am in charge of the battle, I win.

 

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Julie vs Her Body

downloadI’ve recently had direct experience with a concept called “self-limiting exercise.”  This term was introduced years ago by Gray Cook, a well known physical therapist, lecturer and author.  According to Cook, self-limiting exercise “requires mindfulness and an awareness of movement, alignment, balance and control. Self-limiting exercise requires engagement.”  Think the polar opposite of cranking on an idiot-proof weight-lifting machine or sitting on an exercise bicycle while reading the latest hit romance novel.  A great example of a self-limited exercise is running barefoot.  Without shoes on, the runner gets immediate feedback from sensory neurons in her foot when she over strides or strikes the ground heel first.  The feedback is, “ouch, don’t do that,” and she immediately corrects.  But any exercise that imposes natural obstacles and requires technical attention is self-limiting.  When form breaks down, the exercise must be stopped, or else bad things happen.

My current “natural obstacle” is a herniated disk between L5-S1 in my low back.  I was stupid and lifted a heavy, water-logged raft onto a dock at a weird angle.  Then, just to further prove my complete idiocy, I proceeded to carry a heavy basket full of wet towels up a hill to the house.  At that point, my back was screaming bloody murder, and I couldn’t bend over.  This was a few of months ago and I’m almost healed, but man, have I been knocked over the head with the concept of self-limitation!

One would think after an injury like mine, I would rest my back.  And I did for a couple of weeks because I literally couldn’t do anything other than walk…slowly…at first.  But, thinking it was just a back strain, as soon as the pain relented a bit, I eased back into jogging (no problem) and then weight training (BIG mistake).  The dumbbell rows kicked my ass, and I was back to square one–walking slowly. At this point, I realized perhaps I had been a bit premature and promised myself (and others) that I would cool my jets and rest.

Then I had to blow an FEV1.  As you know, pulmonary function testing requires major effort from every single muscle from the bottom of the pelvis to the tiny muscles of facial expression.  In the middle of the “Keep blowing…keep blowing…come on….a little longer” (you know the drill), my entire back contracted into a huge knot with the density of the universe just prior to the Big Bang.  Yes, it hurt like hell and my score was pathetic.  I know what you are thinking:  “What was she thinking?”  Well, I didn’t have a choice.  It was for a certain research study in which I may or may not be a subject and about which I cannot speak.

Then came the MRI and the diagnosis, and the beginning of my very mindful manner of movement.  Here is what I have learned from this experience:  My body is boss, not my brain.  I wanted to swing a kettlebell so badly…they were taunting me from their home in my garage.  But I couldn’t even pick up the lightest one I own without major pain.  I actually had a back spasm from picking up my month supply of colistin from the Kaiser pharmacy.  How embarrassing!  And how extremely humbling.

So for the last month, my badass routine has been a daily dog walk, followed by some planks and hip bridges.  Of course, I’ve been deathly afraid of losing strength and wasting away into a waif-like creature, not to mention junk accumulating in my lungs.  But, alas, this did not happen.  In fact, this period of actually listening to my body tell me what to do (and what not to do) has provided a much needed break from lifting.  I’ve lost exactly one pound (and this was probably due to a miscalculation of the enzyme requirement for a bacon cheeseburger yesterday).

Back at the gym now, I’m slowly getting back in the saddle, swinging a very light kettlebell, doing some easy Turkish Get Ups, and body weight exercises.  The squat rack is beckoning, but I am not tempted yet.  My PT has cleared me to do “whatever doesn’t hurt.” Sounds like that means self-limiting exercises.  Lesson learned.

 

 

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Where is Your Mojovation?

imagesI know…it’s not a word.  But it should be.  Especially if you have CF and you deal with the ups and downs of exacerbations followed by hospitalizations and the frustrating loss of all of your hard-earned fitness gains, there needs to be a unique word to describe what enables you to keep on plugging away at the goal to be fit.  I call it “mojovation.”  I define it as the desire to get your mojo back.

I know you can relate to the following:  There you are lying in your hospital bed, all packed up and ready to go home, waiting the inevitable extra hour or two for some random event to happen before you can leave (a wheelchair that you don’t need but is mandated by the hospital gods, your discharge meds that somehow ended up on the wrong floor, a nurse who needs to come in and “teach” you how to administer you IV’s even though you are 10,000 times more qualified than she is to teach this shit, etc), bored to tears wondering what to do?  I have a great idea.  This is the time for building your mojovation.

Face it, you lost your mojo as soon as you had to put the gown on backwards.  After a day or two of lying flat on your back, your quads probably started shaking when you got up to pee, even though you squated 180 lbs the week before you got sick.  You have likely lost five pounds of muscle in a fraction of the time it took to accumulate it, and your skin has taken on the color of hospital eggshell white.  You want to smash the tiny mirror above the tiny sink in the tiny bathroom and scream at the unfairness of it all, but you know this would result in further delay of your discharge as you would then have to wait for the psych consult. I say, harness this anger and grab a pen and paper…or your iphone if you are younger than 40 years of age and have forgotten how to use a pen.  Your mojo is not gone forever…you just need to locate it.

I learned the following exercise from Dr. Heidi Grant Halvorson, a social psychologist who researches, writes, and speaks about the science of motivation. Since we are speaking of regaining your fitness mojo temporarily lost in Tropical Storm CF, I’ll use a related goal in my example using Dr. Halvorson’s techniques.  The first thing to do is write down your goal.  Make it specific and make sure it is something that you not only really WANT to achieve, but also something that you are confident you CAN achieve.  Then ask yourself, “how will I know when I have reached this goal?”  If you don’t know, go back and work on it until you can answer this question.  Assume, for example, that my goad is “I want to squat 180 lbs again.” This is specific…I will know when I’ve done it (ouch).  I both want to do it (to prove I am bigger and badder than CF) and know that I can do it (I already have).

Now that the goal is defined, Halvorson suggests doing something called “mental contrasting.” I list 4 reasons this goal is important to me, in order of magnitude of importance. Then, I’m to write 4 obstacles, again in order of their obstacle-ness.  New word.  The hardest obstacle to overcome is number one, next hardest number two, etc.  This is easy enough.  Then I write a paragraph expanding on the number one reason this goal is important.  I go for it and just write whatever comes to mind.  Next, I do the same thing for obstacle number one.  Then, again I write about reason to do this goal number two, followed by obstacle number two.  So, four paragraphs in total.  I can stop here.  According to the research, this exercise makes my brain able to hold two ideas at once!  Who knew?  I am able to face an obstacle squarely when it arises, but still retain that little voice telling me why my goal is important and not run and hide at the first indication that life is not always a piece of cake.

The next idea is the gem and really the best part of this whole article.  There is a very simple planning task that, if you do, increases your chance of reaching your goal (assuming it is a goal that you really want and one that is achievable) by 150%, according to numerous research studies.  It is so simple that when you read it, you will say, “no way that is going to work.”  I know, that is what I said too.  But the fact that I am actually writing this is proof that it works!  The exercise is called “if/then” planning. Very simply, I come up with the time and place I plan on accomplishing the task I want to achieve, and write it down.  That’s it.  My first attempt at this was very small–and I suggest you do the same thing.  I decided that “when (you can substitute when for if) the coffee is brewing, then I will do my morning stretching.”  Morning stretching is something I know works well for me, but I often forget…or am too lazy… to do.  My if/then plan worked like a charm on this first test drive.  I was successful every day for a week, seemingly without any effort on my part.  It just happened.

Next, I tried, “when I drink my first cup of coffee, I will write in my journal.”  Again, it worked like a charm.  Magic.  In the past, my journaling efforts have gone roughly the same as my old Buick Skylark, which tended to die every time I turned left. Suddenly, I now automatically sit down with my Bulletproof coffee and write away.

My current if/then strategy is, “if I am Vesting, I will also be writing something in my blog.”  Oddly, this works in the morning (now), but I am having trouble with it at night.  So, this will be the topic of my next blog post…willpower, use it and/or lose it.

So now, back to the exercise goal you want to create while you are waiting to rolling out of the hospital.  First, try the mental contrasting writing exercise about why you want to regain your lost fitness, and what obstacles you will need to overcome.  Then, use the magic if/then technique.  Remember to start very small…test the waters a bit.   Take a tiny baby step in the direction incredible Superman/woman fitness levels. Something like, “when I wake up in the morning, I will do ten pushups,” is a great example.  Remember, make it very easy!  Then, after it becomes automatic, add something that is a bit harder…just a tiny bit.  These little steps build confidence in yourself, which remember is very important when it comes to setting and achieving goals.

Give it a try, and let me know how it works for you!

 

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The Slight Edge

I’m currently reading a book called “The Slight Edge,” by Jeff Olson. The basic message is that significant change is made quite easily if taken one small and consistent step at a time. As a wellness coach, I have read quite a bit about change psychology, and the directness and simplicity of this author’s approach is very appealing to me. I’ve decided to take it on a test drive, and am trying to revive my blog with this approach. When I first started blogging, I loved doing it and felt like it was an awesome way to get my message(s) out about living well despite having ongoing and serious health concerns. Then, life got in the way, and blogging took a back seat to just about everything else that I could think of. Enter the Slight Edge.  I will be posting more.

It seems to me that life is somewhat unfair in that good habits seem to require effort to develop, while bad habits form quite easily simply by being unconscious about choices we make.  The Slight Edge basically refutes this, by making the very obvious point that over time, simply taking one small action each day will compound into huge and lasting change.  On the other hand, not taking that one action will also compound.  Unfortunately, compounding in this negative sense can be disastrous.

A very clear example for the cystic fibrosis peeps out there is doing your daily aerosol treatments.  These are very easy to do (note that I didn’t say “convenient” or “pleasant”).  Seriously…you just sit and inhale stuff.  It’s not like you aren’t going to inhale anyway!  And sitting in a chair holding a nebulizer is not exactly manual labor.  So it’s easy to do treatments.

But it is also very easy to blow them off.  There are a myriad of things that, in the moment, seem way more important than that hypertonic saline, right?  Sleeping in, stopping for coffee before work, playing with your cat, browsing favorite websites, cleaning your closets, plucking your eyebrows…you name it.  Who wants to sit and cough?

But now imagine what happens if that decision to blow off your treatments is compounded, day after day.  Then compare that image to what it looks like if you make that simple decision to do the treatments every day.  Stretch your imagination out to a month or two (here is where I wish you were a pathologist, because my mental image is a slide of healthy, pristine lung tissue vs. nastiness on a slide).  Two very, very different images as a result of two sides of a decisional coin, compounded over time.

Of course, this relates to just about any area of life…not just medical treatments.  Decisions about fitness habits, what you eat or drink, how you relate to people, how you work, and how you deal with stress all compound over time this way.  On a day-to-day basis, it doesn’t matter in a huge way whether you take your daily walk or sit for your meditation.  Not doing them ONE day is easy, and it won’t make a dent in your overall fitness or stress level.  Alternately, actually doing these things probably aren’t going to matter a huge amount on that particular day. But compound these decisions over time and see what happens.

What one life-enhancing thing, something that is both very easy to do but also very easy to blow off, can you to do, today and every day?  Gotta go do my saline now.

 

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