For Jacqui Blue, life with multiple sclerosis (MS) is a balancing act — one that becomes especially challenging during what some call the “crap gap.” This is the period between scheduled disease-modifying therapy (DMT) infusions when symptoms start creeping back in. This leaves her with increased fatigue, brain fog, and pain before it’s time for her next treatment.

“The crap gap is that oh-so-special time between treatments when someone with MS starts to really feel the onset of symptoms return,” Jacqui explained. “You’re not quite due for your infusion yet, but you’re feeling more fatigue, more cog fog, more pain. It can be rough.”

To deal with these difficulties, Jacqui has developed strategies to help her cope. From communicating about her energy levels with the “spoon theory” to using humor and technology, she’s found ways to manage this challenging stretch of time while keeping life moving forward.

The Spoon Theory: Managing Limited Energy

One of the biggest struggles of the crap gap is the sudden decrease in energy, which can be hard to explain to others. Jacqui describes it through the lens of the spoon theory — a concept often used by people with chronic illnesses to explain how much energy they have to spend in a day.

“There are typically 12 hours in a day, so imagine you get one spoon per hour,” she said. “Someone without a chronic illness wakes up with all 12 spoons, giving them enough energy to get through their day. But when you have MS, you might wake up with only eight spoons — or during the crap gap, maybe just five.”

This means that Jacqui has to be strategic about how she spends her energy and manages others’ expectations of her. “If I wake up and realize I only have five spoons, that means I have about five hours’ worth of productivity to distribute between work, family, kids, and everything else. So I have to prioritize.”

Checking in on her energy levels has become a daily habit with her sister, who also lives with MS. “It’s kind of a fun check-in my sister and I do,” she shared. “Like, ‘How many spoons you got today, girl?’ It helps me stay aware of my limits and plan accordingly.”

Relying on Technology To Stay on Track

Cognitive fog, or “cog fog,” is a major challenge during the crap gap. Cog fog can make it difficult to stay focused and make plans. Jacqui has learned to lean on technology to help her keep track of tasks and responsibilities.

“I’m a champion of AI for accessibility reasons,” she said. “I use ChatGPT, Asana [project management software], notes apps — anything that helps me remember what needs to be done. When I’m doing fine, I can hold everything in my head. But during the crap gap, I rely on those tools heavily.”

By using technology, she reduces the stress of forgetting things and keeps herself organized, even when brain fog makes it harder to focus.

Communicating With Family and Work

Jacqui has also learned the importance of being up front about what she’s experiencing. She makes sure to remind her family, co-workers, and friends about the crap gap, often using humor to keep things light.

“I’m one of those people — either you laugh or you cry, so I try to approach it with some levity,” she said. “I have teenagers, and I never want to alarm them. So I make little jokes, like, ‘Y’all know I’m in the crap gap. I’ve got cog fog, so don’t expect too much!’”

At work, she takes a similar approach. “I remind my boss and co-workers what’s happening. That way, if I’m having a rough day, they understand why.”

Honesty and Self-Care

Ultimately, Jacqui has found that the best way to manage the crap gap is through honesty — with herself and others. “I have to check in with myself and be realistic about how much I can give,” she said. “Some days, I wake up and just don’t have any spoons. And on those days, I have to let my people know I can’t do it today.”

Through a combination of self-awareness, communication, and practical tools, Jacqui has learned to navigate the crap gap with resilience.

“It’s not easy,” she admitted. “But staying informed, using technology, checking in with my spoons, and just being honest with myself — those have been the biggest strategies that have helped.”

Find Others Who Understand

On MyMSTeam, the social network for people with MS and their loved ones, more than 219,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Have you experienced the crap gap between treatments? Do you have any tips for others about making it through the gap? Share your experience in the comments below, or start a conversation by posting on your Activities page.

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