Wondering How to Get Organized With IPF? Here’s What I Do
Last Monday was one of my favorite holidays here in Canada. Victoria Day, which honors Queen Victoria’s birthday, kicks off the summer season, and we have an unwritten rule among the cousins in my family to gather at our family lake house after a long winter. Being able to see everyone again last weekend felt extra special after two years of pandemic lockdowns.
Yet, despite how great it felt, a conflicting feeling I often experience was quick to emerge again.
There are few places I’d rather be than at the lake house with my immediate and extended family members when the warm weather arrives each spring. The days are filled with cold beverages on the beach, dips in the water to cool off, late dinners on the grill, and even later nights around the fire. I often joke that I have to return home after a long weekend at the lake to rest. However, that isn’t entirely a joke.
Since my diagnosis of idiopathic pulmonary fibrosis (IPF) in 2016, I’ve done the best I can to keep up with social activities. IPF is a progressive, life-threatening lung disease that eventually causes respiratory failure. Due to being oxygen-deprived, IPF patients suffer from breathlessness that can lead to debilitating fatigue. Understandably, late nights and excessive stimulation and socialization worsen the fatigue, and I’m often exhausted after a weekend at the lake house.
As much as I’d like to keep up with my healthy cousins and avoid proactively organizing each week, I just can’t. Being organized is the only way I can thrive with IPF and accomplish everything I need to during the week while working full time. The need to be organized often trumps my ability to enjoy weekends to the fullest, including long holiday weekends.
Since my diagnosis seven years ago, I get a conflicting feeling in my gut each Sunday afternoon during a long holiday weekend. It’s caused by the need to choose between staying and maximizing my time at the lake house or returning home a day early to get myself organized ahead of the work week. Last weekend was no different. I decided to return home and run a few errands before everything was closed on Monday.
Following are the things I do to prepare and organize for the workweek, which in turn helps me preserve energy while living with IPF:
Meal prepping
After a long day of work, I have little physical or mental energy left for cooking dinner. Eating a healthy and balanced diet is important for anyone living with a chronic illness, including those with IPF. If I can spend a few leisurely hours on a Sunday preparing meals, I’m much more likely to eat healthy food throughout the week. If I don’t meal prep each week, I’m far more likely to have meals delivered, which disrupts my financial planning and is less healthy.
Medication management
Like most chronic illness patients, I manage a lot of medications to stabilize my disease as much as possible. Every Sunday, I spend time organizing my medications ahead of the workweek, including filling my pillbox and taking note of medications that need to be refilled at the pharmacy.
This task doesn’t take long, so it may seem strange that I dedicate time to doing it each week. However, I find it too easy to miss medications if they aren’t organized.
Budgeting
Sadly, patients living with a chronic illness have a lot of unexpected expenses. To account for these expenses, I must keep a fairly tight budget that I revisit weekly. This doesn’t take me long, either, as it often entails just a quick review of my finances and some adjustments to my online banking profile. Checking my accounts each week also helps me to halt any fraudulent activity.
Activity planning
Living on my own requires certain tasks around the house to be completed, such as taking out the trash, mowing the lawn, shoveling snow, and doing light housework. I can’t do some of these tasks anymore due to IPF, so I hire others to do them.
There are a few activities I can do, however, if I space them out. Writing a weekly activity list allows me to account for all the tasks that need to be done and plan when I’ll have the most energy to do them.
What are some of the ways you organize your week to preserve energy and avoid fatigue? Please share in the comments below.
Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Bernie Pack
I,ve been diagnosed with IPF. Just wanting to follow this post to be updated on new medications and procedures.
Phil Sasser
Thanks for the post. Some good stuff. Where I make mistakes is in scheduling. I often overdo it just because I underestimate how exhausted I get doing things I used to do so easily.
Kathie
This article spoke to me and my newly diagnosed Pulmonary Fibrosis. Still undergoing testing but feel the fatigue and fear of what lies ahead. Thank you for posting this.
Delores threatt
Just want to connect with others who have those disease