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Years ago, I hoped to find an answer in the IBD research about managing fatigue, and if I am honest, what I really wanted was a magic pill that would entirely remove fatigue from my life. What I found instead was that the best solutions to deal with fatigue are (1) Manage IBD, (2) check for anemia, (3) manage psychological symptoms, (4), improve the quality of sleep, and (5) investigate medication side-effects as a potential cause of fatigue. While it is critical for people with IBD to pay attention to these recommendations, none of them removed fatigue entirely from my life. Instead, I had to learn how to develop a routine and lifestyle for living with fatigue.

Spoons

One of the first things I did in my quest to learn how to live with fatigue was to remind myself of the language of spoons. Christine Miserandino’s article, “The Spoon Theory” is her attempt to explain to her non-sick friend daily life with Lupus. Christine says that people without illness have unlimited spoons to do whatever they wish, while those with diseases have a limited number of spoons to navigate daily life. One of the things I did when I recognized that fatigue was going to be a part of my life was to have people in my life read Christine’s powerful story.

Now, I can tell a member of my support network, “I only had two spoons today,” and automatically, I receive support without explanation. When I have lived with others, I use this language to ask for help. For instance, “Hey, today I only have a few spoons. Would you mind taking out the garbage tonight?” Having a language also has empowered me to plan my days based on varying numbers of spoons. Instead of getting stuck in the anger and depression that comes from not having enough energy, armed with the language of spoons, I take fatigue much less personally.

Simplify, Delegate, Automate, and Eliminate

During a business course, I learned about Timothy Ferries’ concepts of simplifying, automating, eliminating, and delegating as it applies to one’s business. I have taken these principles and applied them to my life. Essentially, this practice involves examining my to-do list and determining what can be simplified, eliminated, automated, and delegated. For me, it is a freeing process.

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In December, with the holidays, my life became overwhelming. My to-do list was full of errands, I had work pressure building, and I had a mountain of laundry and not enough spoons. I could not eliminate anything on my list, so I considered which item would take the most spoons, and for me, lugging a month’s laundry to the laundromat was the thing I identified as hardest to get done. Knowing that I cannot eliminate this part of daily life, I began to think of delegation and automation. With a little online research, I found and contacted a local laundry service that does porch pick-up and drop-off and included wash, dry, and fold services. If I choose to, with this service I can also automate the task with scheduling it weekly. Having solved the laundry problem, I was then free to use my spoons for work and errands.

Using the same concept of simplifying, delegating, automating, and eliminating there are many types of services that can be used to delegate or automate. For instance, meal delivery services, cleaning services, and other service-orientated companies offer ways to delegate the tasks in my life that take too many spoons. However, I am on a budget, and I cannot pay to outsource all my daily chores. To that end, I also live in a way that allows me to adjust my daily activities based on my spoons.

Meals, Chores, and What I Cannot Delegate, Automate, or Eliminate

I keep my freezer stocked with a variety of home-cooked pre-portioned foods that I can defrost and reheat without dirtying dishes or needing to cook. During the week, when I make a larger dinner, I double recipes that freeze well for my freezer collection. So, when I have a day with fewer spoons, I am not tempted to turn to take out or other options that can cause me to have symptoms. Instead, I have premade homemade meals that follow my dietary needs on hand.

I have also stopped shopping for household items or groceries in-person. For groceries, I use a to-go service that allows me to save my cart, so throughout the month, when I use up something, I make a note, and when I am at my computer, I add it to my shopping list. I do the same thing with deliveries for non-perishable items like paper towels and toilet paper. In some cases, like cat food or cat litter, I set up auto-ship to entirely automate the task.  Then I no longer must spend spoons walking through stores or remembering to order needed house goods. As an added benefit, I am less tempted with those snacks and treats not included in my dietician’s plans for me.

In addition to shopping, my household cleaning routines are built for energy. I have a stool in my kitchen that is tall enough that it allows me to sit when I do dishes or prepare meals. Sometimes just being able to sit is enough to save me that half a spoon I need for the end of my day.  I also have baskets strewn about my home, so if I do not have the energy for a proper clean, I can tidy and place items in baskets to be put away in their specific locations later. I also tend to have a revolving list of things I do throughout daily life that saves me energy later. For example, after I shower, I spray it down with a no-streak cleaner. This act helps keep the shower and tub mildew-free and saves time and energy during deeper cleaning times.

Self-care and Acceptance

When I initially researched fatigue years ago, I ended my research feeling so angry and depressed. I just wanted my energy and life back. In that place of anger, I was unable to focus on the solutions. I cannot control how many spoons I will have on any given day. However, I can control how I think about it and how I treat myself during a lower energy day. I can also do my absolute best to practice self-care, so I can, in general, feel better. Self-acceptance and gentleness have become my core ways of handling fatigue. This self-acceptance and gentleness includes not beating myself up if I go to bed with a sink full of dishes, or if I am supposed to watch my niece and do not have the spoons for hard play, then it is ok for me to snuggle up with her and a movie. For today, it is more than enough that I do my best.

 

• About The Author
From a small town in Vermont, Jenny is a freelance writer and researcher. When she was nine years old, she, like her father and grandmother, was diagnosed with Crohn's Disease. Jenny attended Franklin Pierce University, where she majored in Philosophy and Sociology and completed her M.S. in Human Service from Springfield College. After a proctocolectomy in her early 20s, Jenny entered a period of remission, where she learned the joy of living a full life with an ostomy. Unfortunately, this remission period ended with a severe Crohn's flare that changed her life. As she sought how to cope with this life-changing disease recurrence, Jenny was immediately drawn to Girls with Gut's mission and vision. As the Director of Communications, she is excited to be part of an organization and larger advocacy movement that ensures that no one has to navigate IBD/ostomy life alone.
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