Life is full of unexpected twists and turns, and sometimes, we find ourselves facing much more than that. The diagnosis of a terminal illness can feel like a slap in the face and elicit strong feelings. Even more so when faced with the day-to-day challenge of fatigue. Fatigue compounds every challenging symptom. What would have been tolerable when rested is now unbearable. The official diagnosis code is termed malignant neoplastic fatigue. Managing fatigue is complex. On one hand, rest is prescribed to manage fatigue, but rest in the absence of activity can be a deconditioning process.
Each day you are given a bucket of energy. Wouldn’t it be great if this bucket were predictable day to day? Well, it’s not. The unpredictability of a terminal diagnosis can be maddening, even more so when you cannot even plan your day-to-day activities. It might be helpful to think of your bucket as filled with spoons. You only get so many spoons each day. Some days you get more spoons than others, and each day requires a minimum number of spoons to complete your basic activities of daily living. Eating, showering, brush your teeth, talking with important people in your life, getting to an appointment. Whatever you decide is most important requires your first batch of spoons. Brush your teeth? If that is your priority, then you know to always plan for one spoon to complete this. Taking a shower? That may take two spoons, maybe three. Perhaps it’s a day where you have a large event planned, a family dinner or your son’s band concert. Then that will be a day that you plan to reserve the greatest number of spoons for that event.What else can affect the number of spoons in your bucket? Consider the side effects from treatments or medications. For example, pain medications can cause a certain level of drowsiness, more so when starting a new medication or increasing a dose. Pain itself can deplete energy. It can decrease your ability to focus on an event, likewise, drowsiness decreases your ability to participate. Some days pain control is the priority, other days, tolerating pain for the sake of alertness is the priority. You decide.Balancing the symptom itself and the side effects from managing that symptom can feel like a difficult balance. Don’t expect that it will be simple to decide but reminding yourself in that moment what your primary goal is can go a long way in helping you decide.Now that you get the basic idea, here we go with creating a plan of action!
- Prioritize Your Goals
First things first, let’s get organized. Make a list of your day-to-day goals, and then prioritize them. What’s most important to you that you can’t bear to miss? What can wait for a better day? Prioritizing will help you focus your limited energy on the things that truly matter. For example, one client of mine had her son’s band concert and her oncology treatment on the same day. This is tough, both felt equally important to her with a slight edge on band concert. Here are some ways she thought through the process to meet her goal.Never hesitate to ask your medical team if there is any way for them make changes. Explain the situation and ask for what you specifically need. Can my appt to move to the following day or first thing in the morning so I can nap after treatment and still make the band concert? If your team says “no”. I like to think there is always a plan B. Call in the reserves of friends and family. What can be done to conserve all energy that day? Dinner will be delivered and served by a friend before the band concert. Another friend will do your hair and help you get ready. Your spouse or neighbor will get all your clothes set out for dressing yourself that morning. You will shower the day before. You get the idea, think of every spoon that can remain in the bucket so at the end of the day you have as many spoons left to meet your goal of attending the band concert.
- Set Realistic Goals
It’s essential to set realistic goals when you’re dealing with a terminal illness and exhaustion. While it’s great to aim high, be mindful of what you can realistically accomplish. Break your goals into smaller, manageable tasks. This way, you can make steady progress without feeling overwhelmed.
One client told me she wanted to organize all her pictures for her family. You can see how this would feel overwhelming. Together we established which category of pictures felt the most important and why. Then we created a plan for high energy days and low energy days. Setting realistic goals for her set her path for moving forward while also knowing fatigue would be a part of her day.
- Create a Schedule
A well-structured schedule can work wonders. Block out specific times for different tasks and remember to include some breaks. It’s all about finding balance and ensuring you don’t overexert yourself.
I am thinking of client who after a quality-of-life discussion decided to sleep downstairs since going up and down her stairs daily required an entire spoon. We set a up a schedule for showering three days a week. She was home alone during the day and wanted to complete this task on her own. Since she required a rest break twice while climbing the stairs, and significant break laying on her bed after her shower she structured a block three days a week that allowed her the time needed to balance both the task and needed breaks to feel successful.
- Embrace the Power of Naps
Napping is your new superpower! Even before your diagnosis you may have known this or, naps may be new to you. Either way, when fatigue hits, don’t fight it. Instead, embrace the nap. A quick power nap can do wonders for your energy levels and productivity. Try it out and see if it works to your benefit. - Stay as Active as Possible
You may think, “how can be active when I am so tired?” It can feel like a conundrum! Well, this will likely look different than what it was before but activity, any activity can be help stave off deconditioning. You used to walk 2 miles a day. Think of walking to mailbox twice daily as a start. You do arm circles during commercials while sitting in your chair. You walk ½ mile now. The point is any of these activities can be beneficial for fatigue, both physical and emotional fatigue.
- Seek Support
You don’t have to do this alone. Lean on your support system, whether this be friends, family, or your medical team.
Your medical team may be able to offer pharmacologic and non-pharmacologic options. The primary goal of palliative medicine is symptom management to meet your quality-of-life goals. Sometimes that may involve a medication, such as stimulant, to meet these needs. In may also involve the discussion of other options like caffeine that may be appropriate for you. Always help your medical team be aware of your goals so together you can evaluate what might be right for you.
Friends, family, neighbors, strangers. Yes, people really want to help where they can. Whether it’s assistance with tasks or emotional support, they’ve got your back. I cannot emphasize this enough. This is such a big deal, look for a blog post on this one topic coming soon.
- Finally, Celebrate Small Wins
Life may throw you some curveballs, but don’t forget to celebrate the small victories. Completing even a single task on your list is an achievement worth acknowledging. This is not the time to put yourself down. Think of positivity and winning in the moment and celebrate!
Meeting your day-to-day goals while dealing with a terminal illness and fatigue might seem like a Herculean task, but with a bit of planning and a sprinkle of resilience, it’s absolutely possible. Embrace your journey, surround yourself with positivity, and never underestimate the power of a well-structured schedule and a good nap or whatever it takes to save even one spoon. You’ve got this! So, take a deep breath, put your best foot forward, and keep striving for your dreams. Your indomitable spirit will carry you far, no matter the obstacles.
Don’t hesitate to reach out to me if I can help you meet your quality of life goals. I would love to be a part of your team – click here.
