Post 30: How to Make the Most of Every Day Even With Fatigue - The Five P's
Updated: Nov 26, 2022
"The worst thing is the fatigue. I have no energy to do anything!" Mr. Q exclaims, "I used to play baseball. Last year I was driving and going fishing and hanging out with my buddies at McDonald's. Now I do my laundry, and I'm done for the day! I have a friend who also has congestive heart failure, and it doesn't seem to affect him as much it does me. What do you recommend I do?"
As a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I often hear people who are used to being active and independent make frustrated and despondent remarks about how much they are unable to do, whether it be due to chronic pain, shortness of breath, or overall exhaustion that flare up and limit the day's activities.
Chronic illness of any kind, such as and not limited to multiple sclerosis, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), kidney failure, and cancer, can result in decreased energy and stamina for many people. Sometimes a side effect of the medical treatments themselves is tiredness.
Fatigue is daily, persistent tiredness or lack of energy.
There are many potential reversible causes of low energy, including and not limited to anemia, thyroid disorders, depression, medication side effect, poor sleep such as obstructive sleep apnea, and flare ups of a chronic illness such as COPD or CHF. People who become overwhelmingly tired with an activity may attempt to do less over time, sometimes resulting in deconditioning (that is, being "out of shape"). If a component of fatigue or extreme tiredness is due to deconditioning, this symptom can improve with an exercise program.
Once any potentially reversible causes of low energy are addressed, a person with serious illness or advancing disease may continue to experience fatigue as a physical symptom of their health condition.
Occasionally certain medications are attempted to ease fatigue, each with its potential set of side effects, that are helpful for some people and not so much for others. Even if these medications were to help at a certain stage in a person's life, they may lose their effectiveness as illness worsens or disease progresses.
So how can we approach fatigue, both physical and mental, due to chronic, serious, or worsening illness? We do so by being willing to change our mindsets and daily routines.
Living with fatigue essentially requires a lifestyle change to streamline energy expenditure and reduce unnecessary energy "waste." The goal for this lifestyle change is for a person to retain as much independence as possible or to be able to do as many meaningful activities as possible. The goal is for a person to maintain some sense of control over their life.
There are many specific suggestions online on how a person can amend their day to day activities, optimize their home and environment, delegate tasks that require high amounts of energy, and practice techniques to reduce physical and mental fatigue. This post will highlight a few suggestions for the sake of the example below.
I have heard therapists analogize a person's total daily allotment of energy as their total daily energy budget in the "bank." You have to withdraw and spend energy to complete each activity.
Imagine you have "$100 of energy" each day to spend. It may cost you $20 to take a standard shower, $10 to get dressed as you always have, $5 to brush your teeth, $5 to brush your hair, $20 to carry the heavy load of laundry to the washing machine and another $10 to put several clean clothes away in drawers at various heights and to hang up others on hangers in the closet. It may then cost you $20 to cook scrambled eggs and fry breakfast potatoes the way you normally make breakfast.
This would leave you with only $10 in the energy bank to spend on activities for the rest of the day.
Mr. Q may say, "I feel wiped. I don't think I'll be able to go out to eat with my family this evening."
Performing activities as you always had may not have been an issue when you had $1000 in the energy bank. When the energy "budget" becomes tight, therapists may recommend following the 4 "P's," in no particular order. (Sometimes I see a 5th or 6th "P" added on, and I myself choose to expand with a 5th "P." Note, some therapists may also recommend the 4 "P's" for people whose activities are limited by shortness of breath or chronic pain).
I sometimes prioritize taking a shower, working out, practicing Spanish, hugging each of my four kids, hugging my spouse, writing my patient notes, checking email, drafting a blog post, sweeping the kitchen floor, making a hot lunch for the kids, doing the kids' laundry, spending ten minutes outside, making reservations for our next family trip, calling the kids' speech therapy office to clarify a medical bill, prepping dinner, putting dirty dishes in the dishwasher, and clipping the kids' nails all as "MUST DO." In actuality, most of what I consider priority could be postponed without any effect on my or my family's life.
I imagine many of us are used to categorizing ten items as "priority." When a person has limited energy, they have to change their mindset entirely and truly decide what MUST be completed that day and what pleasurable event, hobby, or activity they MUST reserve energy for.
"Today, I want to shower and I am going to go out to eat with my family. Those are my two MUST activities for the day."
Planning refers to spacing out energy consuming activities, such as making plans to do the laundry on a day separate from going out to eat with family.
Planning also refers to planning out each activity, such as making sure all necessary supplies and equipment are in one location, keeping a chair nearby for rests, knowing when to "let go" and delegate activities that are energy consuming or hold little meaning for a person ("I'm going to ask my son to get my groceries the next time he goes shopping"), and bringing medical equipment such as the rolling walker to use when out and about. The goal is to reduce extraneous movements, such as backtracking.
"I asked Chris to get me a shower chair and install a detachable showerhead. I'll have my towel and clothes on the bathroom counter. I'm going to set up a chair with a towel for me to sit on, placed next to the shower. I'll sit there while I dry myself and put on my clothes. Chris already placed a pack of toilet paper upstairs so now I don't need to climb down the stairs and back up again to replace a roll."
Therapists consistently recommend good posture with sitting and standing to decrease unnecessary strain on muscles and joints. The gist of good posture is "sitting up straight" and "standing up straight."
Standing uses more energy than sitting, and a person should sit as frequently as possible to complete tasks. The goal is not to "become lazy" and to "sit around all day." The goal is to be able to accomplish the activities a person wants to accomplish through the course of a day. Sit during bathing, dressing, prepping meals, and folding the laundry. This may require rearranging furniture in the house to allow for strategic placement of chairs.
Minimize bending over and reaching high above the shoulders, both which require more energy expenditures. This technique may require placing high frequency use items at waist height, such as leaving the salt on the countertop rather than in a spice rack in an overhead counter. A person may opt to use equipment such as reachers or "grabbers", sock aids, and long handled shoe horns.
Most importantly, maximizing energy efficiency may require accepting assistance from family, friends, or home aides for positions that require a lot of energy, such as keeping the arms lifted to wash hair. Again, the goal is to balance personal independence with saving energy "dollars" to spend on meaningful activities.
"I'll use the shower chair. I'll sit while I'm toweling off and getting dressed and while I'm brushing my teeth. I'll sit while combing my hair. I suppose I could set up the eggs, bowl, whisk, washed potatoes, and peeler on the table and drag the garbage pail by my seat. Then I'll only have to stand up once everything is prepped to make my breakfast at the stove."
Purposely plan on taking frequent short breaks while completing an activity, stopping to take breaks BEFORE exhaustion sets in. Frequently people have "good days" when they accomplish as much as possible and then they are set back two to three days attempting to recover.
In order to have as many "good days" as possible, we should deliberately do things at a slower, steadier pace than what we are probably used to. It takes a conscious effort - and perhaps a timer or alarm - to take a break before a person is actually tired.
Some people may find they start to feel tired after twenty minutes of light work, whereas others after one hour. Schedule breaks just short of these time intervals.
If a big activity is planned such as a reunion with friends or going out to eat with family, schedule rest before and after the big activity.
Rests and breaks mean sitting or lying down and physically doing nothing. "I'll fold the kitchen towels and chop up the vegetables while I'm sitting" does not count as rest.
"Okay, I don't know about a timer. I'll think about it. For now, I'm going to stop completely, rest my arms on my lap, and do those deep breathing exercises my daughter showed me. So I'll take deep breaths at the end of my shower, after I towel down and get dressed, and after I walk to the kitchen and grab my breakfast items. It'll drive me nuts, but I'll try. Maybe I'll get used to it."
5. POSITIVE THINKING
Sometimes I see therapists add a fifth "P" such as "Practice" or "Positivity." The positive thinking resonates with me, so I am choosing to add it as a recommendation.
Having met with many different types of people at various stages of illness, I have observed that perceived quality of life seems to differ whether a person focuses only on things they used to be able to do and now no longer can versus focusing on the things they are currently able to do.
The person who focuses on the things they are able to do is usually much more willing to adapt and try new techniques or new equipment in order to continue doing the activities that they want to do. They are better able to control which tasks to delegate and what kind of help to accept. They seem to have an overall better sense of well being.
"I'm still living on my own. Even if I need help in some areas, at least I'm able to do most things for myself and I can still drive. I just need to remind my brain that I need to baby my body."
Using the 5 "P's" to get the most mileage out of his tight $100 energy budget, Mr. Q is able to save energy "dollars" in the morning so he can enjoy dinner with his family later in the day.
He decides to save $30 by postponing laundry to the next day. "Today I just want to focus on having a good time eating out with my family." He spends $10 to shower using the shower chair and $10 total to get dressed, brush his teeth, and comb his hair with a ten minute break between showering and dressing. He takes a short break while sitting down after walking to the kitchen and gathering his materials and ingredients to prep his breakfast. He only stands up once to stand at the stove to cook his breakfast. The planning, pacing, and positioning adjustments result in his spending $15 rather than $20 to make breakfast.
This leaves him with $65 of energy in his energy bank to spend the rest of the day. Mr. Q plans on using the bulk of this on enjoying an evening out with his family so he schedules to rest for an hour before and an hour after the evening outing. "I don't want to be wiped tomorrow. I'll need to have energy to do my laundry."
Living with serious illness, or any chronic disease such as diabetes, requires lifestyle changes to optimize living with the illness. Fatigue, especially, is a difficult physical symptom to live with because it requires making adjustments to all aspects of daily living. I hope the "energy bank" perspective and the 5 "P's" energy conservation techniques will help a person with serious illness make the most of every day.