Monday, May 8, 2017

CF Awareness Month Day 8 - Non-Compliance

Non-compliance and I have an unfortunate track record.  Growing up, I honestly didn't need breathing treatments very often.   I did them when I had an increased cough, usually when I was sick or the weather was changing, but I did not do them every day.  Somewhere around late elementary school, I did start using steroid inhalers every day, and was pretty good at remembering to do that.  I'm glad I had all those years of not needing to do breathing treatments all the time - but at the same time, I think that made the adjustment even harder when my health started changing and I really did need to do them every day.

I dug my heels in when doctors started wanting me to do multiple breathing treatments every day.  It just took SO MUCH TIME.  So, all through college and my early twenties, when I should have been doing an albuterol treatment, hypersal, pulmozyme, and some kind of inhaled antibiotic every day, along with two Vest treatments, I mostly just stuck to albuterol treatments.  I felt a little guilty not doing the rest, but was proud enough of myself for adapting to do albuterol treatments twice a day that the guilt wasn't enough to make me change my habits.

After my hospitalizations in 2011 and 2012, I got better about sticking to my treatment plan, but still was not great at it, and eventually fell back into my old routine of rarely doing anything more than albuterol treatments and inhalers.  My drive picked up again right before my wedding in 2013, but even that didn't really stick.  It wasn't until after being hospitalized at the end of 2014, a few months before taking the bar, that my compliance routine really whipped into shape.  I was afraid of getting sick again in February, like I had every February for several years at that point, because that was the month I had to take the bar.  So I upped my game, got into a daily routine of getting ALL my treatments in, every morning and every night.  And guys...I did SO WELL.  The routine stuck around for months after the bar exam was over, and that was one of my healthiest years in recent memory.

Then I started back to work full-time, this time in the career I'd always wanted, and though I tried hard to keep up with all my treatments, I eventually slacked off again.  And my health suffered.  And now, I'm still fighting hard to get it back.

We're all human - no one can being compliant 100% of the time for years and years on end as a disease like CF demands.  There are times I/we have to make a choice - like the days when it's late when I get home, and I have to decide,  do I sacrifice sleep so I can get ALL my treatments in tonight?  Or is resting my body more important?   The same question sometimes comes up in the morning - I wake up still exhausted, and have to decide if I should force myself up to do my treatments, or should I let myself get a little extra sleep before starting the day?

As much as parents, doctors, etc., want to force compliance on CF patients, its the patients themselves who have to work out their own personal motivation to stay compliant with treatments.  If you struggle with compliance, know you absolutely aren't alone.  If you're looking for that motivation to establish a compliance routine, I'd encourage you to set aside a block of time - maybe 1-2 months, where you are extremely diligent with all your therapies.  Most likely, you will see and feel a great improvement - and maybe that will be enough of a jumpstart to motivate you to keep at it.  And realize that your motivation levels will likely cycle, and that's ok - just always keep looking for that new thing to keep you motivated to be the healthiest version of yourself that you can be.

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