Patience

'Patience is a virtue'. Patience helps us accept what we cannot change, and by the same token helps us accept what has to be changed.  The reason I am writing today about patience is because this guidebook rule has shaped many of my most important life choices.

Becoming a physical therapist in about a year from now, patience will be my middle name.  You have to take a great deal of time to not only improve your hands on experiences with people, but also take the time to communicate effectively with them. 

So why is this relevant to CF?

Patience is required of all persons who come into confrontation with CF—patients, dads, moms, sisters, aunts, uncles, brothers, best friends, physicians, supporters—everybody is required to be patient.  Patient with PFT and glucose results, patience with learning how to do a new nebulizer or G-tube treatment, patience with anxious family members/friends—we as a CF population require a little more time, a little more waiting to get the things we want or need. 

I chose the longer route to get to PT school because I knew with treatments, exercise, and sleep needed that I could not, and refused to, make myself struggle to speed up my graduate career. I took the 8 year route instead of the 6 year route, and it saved me a lot of headache health wise. 

I have also recently decided on being patient with my body.  CF is known as a progressively degenerative disease.  I battle with this occasionally, and I honestly get incredibly frustrated at having this disease and how it has scarred me physically. But I’ll always have this thought that my first doctor, Dan Schidlow, left with my mom 23 years ago. She was so worried that CF was progressive and that my life span would not be as long as everyone else’s.  She was devastated that my lung function would be worse than everyone else’s my age for the rest of my life. What he explained to her (paraphrasing) is that yes, CF is progressive, but we as a human race all age.  I would just age a tiny bit faster than the rest of the world.  Everyone’s lung function declines as we age—he explained that it was our job to make sure that we keep my lung function as close to normal as we can.  He did not say I wouldn’t make it past high school, that I’d be in the hospital every 3 months—he said I was simply a small, a miniscule amount different than the rest of the world.  Take that how you will—but that’s my glimmer of hope.

When I get frustrated with Achilles tendon pain from taking antibiotics, chest soreness and headaches, sinus and lung infections, coughing in public, I pull that thought out that my difference is not so huge, and I will be as close to normal as I want to be.  I take steps to make myself better, just like the rest of the world does when they get sick—I get extra sleep, eat healthy, try to laugh as much as I can (without coughing), and mentally restore myself. 

Recently, I tried something new based on this theory of patience. Over the past couple of weeks, I have had a “sinus infection”—meaning I dunno what it is but it involves lots of green stuff, coughing and blowing my nose.  I panicked as soon as I saw the signs—runny nose, coughing, chest soreness, mucus getting deeper in my chest—and immediately thought Antibiotic Time. But I also knew that I have a long life to live, and that antibiotics won’t always fix everything. I decided to try being ‘normal’—and surprisingly, it worked. Sleeping good, eating good, taking breaks when I need to, it all did the trick. What I found was a mental strength too—I had such an inner fire to destroy whatever this ‘thing’ was inside my chest that I fought through a 40 hour week of clinical work, pushing through with a determination I have not felt in a long time.  And guess what? Colors are white today, and I ran 4.5 miles.

Disclaimer: Please, please do not read this blog and think its okay to skip your antibiotics—ITS NOT. But for myself, I know my own body, and I know what I can handle and not handle.   Most people learn this in college when our immune system is so-soàso please, get to know your limits first.

I’ll leave you with one more thing I tell a lot of my older patients and that I will always believe—Age is Just a Number. Do not let the limits of what you are now stop you from breaking your boundaries tomorrow.  You want to break those boundaries? Be patient with your body, take care of yourself, and make your own choices.  As the CF population is beautifully aging, independence is an important lesson for us to learn.  No one, even your closest parent or friend, will understand how you truly feel physically.  It’s your job to speak up and communicate to the world what is going on in those organs of yours.  Age is just a Number, but with increasing age comes an increase in decisions about your health, and you ultimately have to make those decisions.

In conclusion, be patient with yourself.  You owe it to yourself to take time to understand what’s going on with you physically, mentally, emotionally so that you can make confident decisions about your health.  When you get frustrated and cannot figure something out, just remember you have about 99,999 other people worldwide who have equally hard if not harder decisions to make or bodily puzzles to solve.  We are all here with you, breath by breath.

Breathing & Beating,

Meghan

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