'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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