Cystic fibrosis requires a complex and time-consuming treatment plan beyond what many other chronic illnesses require. It’s important to identify the barriers to treatment adherence and find practical ways to address the issues.
We have all been there, the perplexing pause followed by the blank stare directed at the bottle wondering if you just took your pancreatic enzymes with no recollection. Of course, when this happens, there’s never anyone around to ask, “Did I take these?” because that would be just too easy. So, you chance it either way and vow to pay more attention next time.
Yep, been there, done that. Complete honesty: I was just there 10 minutes ago. Forgetfulness has always been a challenge for me when it comes to treatment adherence. You would think after 20 years of taking the same medication before eating, it would be so very simple. However, there is just so much to remember on any given day, that I’m not sure any brain can contain all that information without fail. Also, #mombrain is a real thing.
There are some very easy steps to ensure minor forgetfulness doesn’t make you a noncompliant patient. Alarms set on a smart device are a reliable and simple way to remind you to complete an action. I often set iPhone alarms when I am on IV antibiotics to remind myself when it’s time to hook up or switch medications. The same goes for setting an alarm for blood sugar checks, oral antibiotics, medication refills, etc. It is quick, effective, and produces immediate results (as long as you don’t hit snooze).
Another way to combat forgetfulness is to develop habits that act as “cognitive reminders” or “memory aids” (thanks to my sister turned occupational therapist for those official terms). When adapted to the CF world, a memory aid could be as simple as turning over the enzyme bottle after taking them to signify the task is completed. Checklists, color-coded bottles, systematic routines, or weekly pill organizers can all serve as successful memory aids as well.
Question: What happens when you need to consume around 50 pills a day and complete hours of complex airway clearance while being a mom, working part-time, [insert your crazy life here], etc.? Answer: CHAOS.
Disorganization can make treatment adherence incredibly frustrating, difficult, and time-consuming. Implementing a “system” that works with your routine and care plan is the best way to stay organized. Many CFers have found success in making a treatment cart using a mobile cart on wheels such as the Ikea RÅSKOG Utility Cart. A cart like this encourages compliance because it makes it a one-stop shop to complete treatments with your medications, nebulizer, Vest, and any other necessary parts and pieces.
Another way to encourage compliance is to organize on a smaller scale as well. For example, using weekly pill organizers for daily medications, separating inhaled medications into plastic bins to make them more accessible, and having a place to dispose of needles and syringes are all ways to make your treatment time straightforward. Less thinking, searching, and stressing during treatments can increase compliance if you struggle with disorganization.
Lack of motivation
Lack of motivation is, arguably, the most difficult barrier to overcome with treatment adherence. It’s a tough one to deconstruct because there may be so many factors affecting motivation at any given time: mental health, physical health, relationships, emotional support, clinical support, etc.
When I feel apathy toward my care, I return to the root of why I choose to continue to fight cystic fibrosis every day. It’s true! You choose to fight every single day! What a tremendous source of power and strength we have within us as CF patients. I fight every day because I want to be here to invest in the people I love; my husband, my son, my family, and friends. If I spend some time thinking about the very reasons I choose to fight, something ignites within me, and I gain the spark of motivation needed to start another round of treatments or get off the couch to take a handful of pills. It doesn’t always work, but it’s my primary defense when I feel “bleh” and unmotivated to take care of myself.
(Side note: Please speak to your CF doctor if you believe motivation is a significant issue. Lack of motivation can be a sign of anxiety and depression, and needs proper examination and treatment.)
More realistically, rewards, rewards, rewards! Get yourself that overpriced coffee drink if you have been compliant for a couple of days. Reward yourself with a new cozy blanket to curl up in while you infuse antibiotics. This is your life. No one denies that it’s difficult, so take the necessary steps to make it as enjoyable as you can. You’ve got this!
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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