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An image of the blog author wearing a mask sitting in a char with a green background.

An image of the blog author wearing a mask sitting in a char with a green background.

I started September, self-care awareness month, in the cycle of doom—not a good start to a month designated to help us remember to prioritize and love ourselves. Having both a mental illness (Attention Deficit Hyperactivity Disorder) and IBD is a bag of party favors no one asked me if I wanted. When one is activated, the other pings off of the first creating an exhausting spiral that I must use every ounce of reserve strength to put the brakes on. For me, applying those breaks in the middle of the cycle of doom is the self-care act that I must do to survive.

The ‘cycle of doom,’ as I have coined it, is a process of losing my footing as I slide deeper into a depressive state, which creates an interplay between my physical and mental health. Not only can stress result in an exacerbation of IBD symptoms, but also, when I struggle with self-care, I struggle to focus on the routines that keep me hydrated, and my body adequately nourished. When I am even struggling with mild dehydration, I am more likely to also be struggling with anxiety and depression. As I become more malnourished and dehydrated, I then become more depressed, have increased difficulties with cognition, and start struggling with fatigue. All of this then makes it harder to self-correct the spiral. The reason that this cycle exists and why it becomes so challenging to leave is likely due to impairments in executive functioning.

Executive What!?

ADHD symptoms are symptoms of executive dysfunction. I write about ADHD and advocate about it because women with IBD are MORE likely to have ADHD than women without IBD. So, there is a chance if you are reading this that you like me are blessed with both. Additionally, IBD and ostomy-related symptoms of dehydration and malnourishment can also impair executive functioning.

Executive functioning refers to the brain’s central control process, which activates, integrates, and/or manages other brain functions. Executive functioning is responsible for time management, attention, switching focus, remembering details, avoiding saying or doing the wrong thing, using experience to inform current actions, and multitasking. Some experts explain that executive functioning’s role in the brain is similar to that of an orchestra’s conductor. A conductor tells each musician when to play, at what speed to play, and other functions, which directs the musicians to perform as a synchronous entity to play a single piece of music. When executive functioning is impaired, it is akin to the brain struggling to play a complicated song in synchronicity as if the brain’s conductor had a few too many drinks at dinner. Any IBD patient who has experienced brain fog will explain that this executive dysfunction is an incredibly frustrating symptom of bowel dysfunction and illness.

For me, when my executive functioning is impaired either by an ADHD flare or IBD my life quickly starts to feel unmanageable. Usually, I start noticing I become more and more scattered. For instance, there was the time I lost my sponge while doing dishes only to find it neatly put away with the clean laundry a few hours later. As the cycle of doom progresses and my executive dysfunction increases, the half-finished projects start stacking up, clutter increases, losing things becomes the norm again, my stress level rises, and I feel increasingly out of control. As I begin to lose focus and spiral out of control, I forget more self-care things that are essential to preventing dehydration and malnourishment, which creates more executive dysfunction.

An image of a women’s lap (the blog author’s) and legs with knitting- part of my daily practice of self-care.

An image of a women’s lap (the blog author’s) and legs with knitting- part of my daily practice of self-care.

Ending the Cycle

So how do I get out of the cycle of doom and repair my executive functioning? With small intentional steps towards something different. Recently, I have started saying, “bad self-care is still self-care.” For instance, eating a pepperoni pizza is better than eating nothing, and eating a made-at-home pepperoni pizza is better than eating a takeout pizza. Washing just my blender so I can make a smoothie is better than washing no dishes and skipping my daily nutrition shakes. In another way of thinking about it, if the sink is full, washing 3 dishes is better than washing zero dishes. If I am in trouble either depressed or having symptom exacerbations, anything I can do is better than doing nothing and sinking deeper into the cycle.

When I am feeling depressed, having an ADHD flare, or increased IBD symptoms, I remind myself that the only thing I need to worry about in those moments is ending the cycle of doom. Because if I don’t find a way out, the cycle will suck me in and create even worse impacts. So, I allow myself indulgences and seek out ways to increase my brain’s happy chemicals. Food, shopping, watching comedy, reading for hours, or other acts of self-preservation become critical. It can be hard, especially when there are life’s responsibilities like if one has children or full-time employment. However, prioritizing self-care during these times is the most important thing a person can do. If I am not okay, then I can’t be healthy for those that rely on me. However, sometimes I do have major depression and I can’t summon the strength to even accomplish the small things.

When I am becoming alarmed at how I am feeling, and nothing is working to end the cycle I put myself out there and tell everyone I know I am struggling. I have even been known on more than one occasion to over-share on social media to let everyone in all of my circles know I am not okay. With these acts of honesty and sharing come people checking in on me. With that, I feel less alone and more motivated to have something self-care-related to report. Putting myself out there also means I have more help. For example, as I was leaving the cycle of doom recently a friend stopped by and sat in my kitchen, as I prepared multiple meals for my freezer.

Finally, I learn from each cycle of doom more ways to prevent future cycles. For example, this time I learned that I struggle to eat when I start having executive dysfunction, which can cause increased dysfunction. So, those freezer meals are individually portioned, diet-compliant, and only require that I turn on an oven and put a pre-made foil packet in for an hour. Next time I find myself becoming scattered or having a flare of executive dysfunction it will be incredibly easy for me to have a healthy nourishing meal– a simple act of self-care, which will prevent malnourishment.

Self-care is critical when I am struggling, but it is equally critical for preventing the cycle. The practice of daily self-care does not have to be overwhelming or grandiose. Rather, it is those small acts of daily care— taking a few minutes for gratitude or preparing a healthy meal, which sustain me. If you have not considered adding daily self-care to your health routines, I strongly encourage it. While it will not entirely prevent brain fog or executive dysfunction, having the practice in place makes it that much easier to cope with chronic illness.

• 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.
Annemarie’s Urostomy Journey A Gusty Feeling: Advocating for the Best Care Possible as IBD Patients

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