ICU – “I See You” Podcast
Pacing with a Vestibular Disorder
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In this episode of the ICU Podcast, we are diving into the concept of pacing—a vital self-management strategy for people living with vestibular disorders. When dizziness, vertigo, brain fog, and fatigue are part of your daily reality, even routine activities can become overwhelming. We’ll explore how pacing helps individuals with vestibular dysfunction conserve energy, manage sensory overload, and create a more predictable rhythm in an often unpredictable life. Pacing isn’t about giving up—it’s about planning ahead, listening to your body, and protecting your vestibular system from being overstimulated. We’re joined by a patient who has learned to pace their days to avoid symptom flare-ups, and a healthcare professional who supports patients in integrating pacing into their treatment and rehabilitation plans.
Guests
Tracey Franklin had just started a new job while recovering from a viral flu when she began experiencing fatigue, dizziness, and brain fog. A few months later, she went on sick leave, followed by disability. In 2018, she retired medically from her 30-year career as a publishing professional. Over the next six months, Tracey saw multiple doctors and underwent various tests and was diagnosed with Vestibular Migraine and Persistent Postural Perceptual Dizziness (PPPD). Along with ongoing VeDA support groups, vestibular rehab, cognitive behavioral therapy, and medical treatments, she manages these invisible disorders by getting adequate rest and pacing her commitments and activities. She hopes to build a bridge between the vestibular and medical communities, so others are diagnosed sooner. Tracey loves ice cream, writing, the beach, and snow. She lives with her husband of 21 years and their cat. She believes it’s her faith in God that continues to bless her with managing her conditions and having fewer symptomatic days.
Steph Fowler is a Licensed Clinical Professional Counselor and Certified Alcohol and Drug Counselor (LCPC, CADC). She is also a chronically ill, disabled, and neurodivergent therapist, writer, consultant, and coach who has lived with Long COVID since early 2020. After her health, work, and life were dramatically changed by this condition, she shifted her business and rebranded as Misfit Mental Health. She now focuses on supporting people in the chronic illness, disability, and COVID Conscious communities – as well as their loved ones and care providers. Earlier this year, Steph was featured in TIME Magazine, sharing her personal and professional insights on navigating healthcare and medical gaslighting. When she’s not depathologizing non-conformity, she enjoys taking care of her houseplants, building LEGOs, spending time with her partner and their cat Ziggy, and all things macabre.
Summary
Tracy’s Story: From “Mover and Shaker” to Intentional Pacer
Before her vestibular disorders, Tracy describes herself as a “mover and a shaker” who was never still. That changed abruptly when fatigue, dizziness, and brain fog began to dominate her days. Her husband noticed before she fully did: she was going to work, coming home, getting into bed, and repeating that cycle, with little energy for anything else.
Over time, Tracy learned something many vestibular patients come to recognize:
much of her daily energy is spent simply keeping her body upright and her brain oriented. That invisible burden—constantly managing balance, dizziness, and visual input—explains why even small activities can feel enormous.
The Real Cost of “Everyday” Activities
For Tracy, tasks that might seem trivial to a healthy person…
- a trip to the grocery store
- some light housework
- a short walk
- a 20–30 minute phone call
…can be enough to drain her for the rest of the day. Computer use, in particular, became so exhausting and symptom-triggering that she ultimately had to medically retire from her publishing career. Multitasking—like handling a ringing phone while typing on a computer—is now impossible.
Tracy relates to the well-known Spoon Theory, which imagines a finite number of “spoons” (units of energy) per day. Once they’re gone, they’re gone. She’s had to learn to count those spoons carefully—not just for physical activities, but also for mental and emotional demands.
Redefining a “Full Day”: Events and Boundaries
A turning point came when Tracy’s neurologist prescribed cognitive behavioral therapy (CBT), and her therapist introduced the term pacing. Tracy was told a hard truth:
“You are not the person you used to be, and you have to mourn that person.”
From there, Tracy began to rethink her days using a concept she calls “events.” Anything that requires notable energy becomes an event—
- a doctor’s appointment
- a Zoom meeting
- a grocery pick‑up
- a social outing
She structures her schedule around these events:
- Often, one major event per day is her maximum.
- If a day has “too many events,” she may cancel or move some.
- If there’s no big event planned, then rest itself becomes the event.
She plans rest before and after significant activities. For something big and emotionally or physically taxing—like a wedding—she may start resting days in advance and continue recovering for days afterward. Sometimes, that one event essentially “uses up” her entire week.
Handling the Unexpected—and the Anxiety
Not everything can be planned. Unexpected demands, especially those that trigger anxiety, are particularly hard to pace. Tracy described a recent example:
- She had a scheduled evening Zoom meeting—her “event” for the day.
- An elderly neighbor locked herself out and needed help.
- Tracy shifted her attention to solving that crisis, then realized she still needed to eat and prepare for her meeting, or risk a health spiral.
These moments create a mental negotiation: What can I drop, what must I do, and how do I prevent this from tipping me into a crash?
To cope, Tracy:
- Uses written lists and calendars (both paper and electronic) to visualize what’s truly possible.
- Removes one event when another is unexpectedly added.
- Sets firm boundaries—for example, telling friends not to call after 7 p.m., and blocking out days on the shared calendar as “Tracy not available” so her husband knows not to add demands.
The Emotional Work: Mourning, Acceptance, and Support
Emotionally, pacing is not just logistics—it’s grief work. Tracy has had to mourn:
- Her former career
- Her old energy levels
- The identity of being endlessly productive
She leans heavily on journaling, prayer, and her faith as anchors. She also finds comfort and modeling in her cat’s simple rhythm of eating, resting, and existing without guilt.
Support groups, particularly those for people who retired early due to vestibular disorders, have helped normalize her emotional responses. Hearing others describe mourning their “former selves” reassures her that she’s not being overly dramatic; she’s responding appropriately to a profound life change.
Interestingly, the COVID-19 pandemic brought an unexpected sense of peace. When the world collectively slowed down—fewer social obligations, grocery pick‑up instead of crowded stores, less pressure to be everywhere—Tracy’s symptoms eased. The external pace of life finally matched the internal pace her body had been demanding all along.
Steph’s Perspective: Pacing as a Core Mental Health Skill
Steph Fowler brings a dual lens to pacing: she is both a mental health professional and a person living with long COVID. She describes long COVID as touching every part of her life, including her ability to work. She’s had to drastically reduce her hours and redesign her practice so she can continue offering therapy, primarily via telehealth.
Rethinking Capacity: The Phone Battery Analogy
When Steph introduces pacing to clients, she often starts with a simple analogy: the smartphone battery.
- When your phone hits 0%, it’s done—you must recharge it.
- Over time, a phone battery can degrade. Maybe it never charges beyond 74% anymore.
- You can’t treat that phone as if it still has 100% capacity. You adjust your expectations.
Our bodies, Steph explains, are much the same—except we can’t just swap out the battery. For people with chronic illness:
- Their “full charge” might now be 60–70% of what it used to be, or less.
- Sleep and rest recharge them, but not back to an old, pre‑illness 100%.
Pacing means accepting this new threshold and planning within it, instead of constantly trying to push beyond it and then crashing.
The Boom–Bust Cycle and Emotional Fallout
Many people begin their chronic illness journey caught in the boom–bust cycle (also called “push–crash”):
- On a “good” day, they do too much (boom).
- This triggers a flare or crash that wipes them out (bust).
- Recovery takes days or weeks, followed by another attempt to “catch up,” repeating the cycle.
This pattern is not just physically damaging; it is psychologically brutal. Constant trial and error, hope and disappointment, can:
- Erode self‑trust (“I can’t predict my own body”)
- Increase anxiety and depression
- For some conditions, actually worsen the illness by continually overtaxing the system
From Steph’s perspective, pacing is one of the most important skills for people with chronic conditions because it:
- Helps stabilize symptoms, making life more predictable
- Reduces the intensity of flare‑ups, even if it doesn’t eliminate them
- Can, in some conditions, gradually raise a person’s baseline capacity over time
Agency, Not Surrender
Culturally, pacing can feel like failure. Many people initially experience it as “giving up,” doing less, or being “lazy.” Steph works with clients to reframe pacing as:
- A primary tool of agency: one of the few things they can control
- A way of designing a life that prioritizes quality of life within limitations
- A strategy for avoiding unnecessary suffering and preserving capacity for what truly matters
In her workshops, Steph broadens the conversation beyond physical exertion. She highlights social, emotional, and cognitive drains—like intense conversations, screen time, decision‑making, or emotionally charged events—that can be just as depleting as physical activity. Many participants are surprised to realize where their energy is actually going and why they feel exhausted even on “physically easy” days.
Pacing as Mental Health Care
From a therapeutic standpoint, pacing is deeply intertwined with mental health:
- Stabilizing symptoms through pacing often lowers anxiety and improves mood.
- It supports processing grief, identity shifts, and loss of the “old self” from a steadier place.
- It helps people step out of cycles of self‑blame (“I failed again”) into a more compassionate, realistic relationship with their bodies.
Ultimately, Steph sees pacing as a gateway to building meaningful, sustainable lives even when a cure or full recovery isn’t possible. It moves the focus from endlessly chasing the old life to creatively shaping a new one.
Shared Themes: Acceptance, Communication, and Redefining “Enough”
Both Tracy and Steph emphasize that pacing is not just a scheduling technique—it is a whole-life shift:
- It requires radical honesty about limits.
- It involves tough conversations with family and friends about what is and isn’t possible.
- It asks for ongoing emotional work around guilt, shame, grief, and fear of being misunderstood.
And yet, as they both illustrate, pacing can also open doors—to more predictable days, fewer crashes, deeper self‑understanding, and a new sense of control in an otherwise uncontrollable situation.
Pacing, in this context, isn’t about doing nothing. It’s about doing what matters most, in a way your body can actually sustain.
