The Dual Diagnosis Diaries: 💜Different Season. Different Race. Same Determination

Lately, I’ve been thinking a lot about exercise.

Not because I’m training for anything. Quite the opposite.

I’m simply trying to figure out how someone living with Crohn’s disease and MuSK-positive Myasthenia Gravis is supposed to exercise when finding enough energy to get out of bed already feels like a workout.

“Exercise gives you energy.”

How many times have we heard that?

It’s one of those phrases people say with the best intentions. Doctors recommend it. Friends encourage it. Social media is full of influencers reminding us that movement is medicine.

For many people, that’s true.

But what happens when simply getting out of bed requires more energy than most people use during a workout?

That’s the question I’ve been wrestling with lately.

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🌿 I Want to Be More Active…

I’ve been trying to figure out how to become more active.

Not because I have dreams of running another marathon or becoming a fitness influencer. Trust me—that ship sailed a long time ago. 😂

The funny thing is, there was a time when completing a half marathon wasn’t just a dream—it was something I actually did.

In 2014, I completed a half marathon to help raise awareness for Crohn’s disease.

Truth be told…if my body would cooperate, I’d love the opportunity to cross another half-marathon finish line someday.

Sometimes it feels like I’m getting to know an entirely different body than the one I lived in just a few years ago.

Some days, I catch myself comparing today’s body to yesterday’s body.

That’s a dangerous game.

Chronic illness has taught me that healing isn’t about becoming the person I used to be. It’s about learning to become the healthiest version of the person I am today.

There’s a grief that comes with chronic illness that people don’t often talk about.

You’re not always grieving the loss of a person. Sometimes you’re grieving the loss of abilities you once took for granted.

The body that could go for a walk without checking the weather. The body that didn’t have to wonder if it had enough energy to make it back home. The body that crossed a half-marathon finish line believing there would be many more to come.

These days, I’m simply trying to find a way to move that works with the body I have today.

I want to improve my overall health, strengthen my body as much as possible, and lose weight—or at the very least maintain the weight loss that happened before I was diagnosed with Myasthenia Gravis.

As I shared in a previous diary entry, my weight has been on quite the rollercoaster over the years. These days, my focus isn’t chasing a number on the scale. It’s doing everything I can to care for the body that’s carried me through Crohn’s disease, Myasthenia Gravis, and every challenge in between.

But then reality shows up.

Reality looks like Crohn’s disease. Reality looks like MuSK-positive Myasthenia Gravis. Reality looks like waking up already exhausted before my feet ever touch the floor.

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⚡ The Daily Energy Budget

Most people wake up with a full tank of gas.

Mine often feels like the fuel light has been on since yesterday.

Before I’ve even thought about exercising, I’ve already spent energy convincing myself to get out of bed, getting dressed, fighting morning stiffness and fatigue, getting ready for work, and mentally preparing for whatever the day decides to throw at me.

By the time I make it through a full day as a Regional Property Manager, my battery isn’t running low. It’s looking for a charger.

“Some days, my victory is simply crossing the parking lot without fully losing my breath.”

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☀️ When Walking Used to Be Simple

Before Myasthenia Gravis became part of my story, walking was something I genuinely enjoyed.

Long before I moved to California, when I was still home in the Washington, D.C., area, one of my favorite forms of exercise was walking across the Woodrow Wilson Bridge.

I would start on the Maryland side, walk all the way across to the Virginia side, turn around, and walk back again. I did that three to four times a week.

I loved those walks: watching the water, feeling the breeze, seeing runners, cyclists, families, and tourists all sharing the same path.

There was something peaceful about putting one foot in front of the other while the world kept moving around me.

Looking back, I didn’t realize those ordinary walks would one day become extraordinary memories.

After moving to California, my walks became shorter—usually about a half mile around my neighborhood—but I still enjoyed getting outside whenever I could.

Sometimes I think back to 2014 and smile. At the time, Crohn’s was the only autoimmune disease I knew I was fighting. I had no idea another rare autoimmune disease was quietly waiting in the wings.

If someone had told me then that one day I’d be trying to figure out whether I had enough energy to take a short walk around the neighborhood, I probably wouldn’t have believed them.

Now, even that feels uncertain.

One of the many challenges of living with MuSK-positive Myasthenia Gravis is heat sensitivity. Heat can worsen muscle weakness and fatigue, turning what should be a relaxing walk into something that leaves me feeling drained instead of refreshed.

Instead of looking forward to being outside, I find myself asking:

• Will today’s temperature make my symptoms worse?
• Will I have enough energy to make it back home?
• Am I helping my body…or hurting it?

It’s amazing how something that once felt so natural now requires planning, caution, and sometimes fear.

Chronic illness doesn’t just change what we can do. It changes how we have to think about doing it.

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💪 The Invisible Tug-of-War

Crohn’s disease tells me to conserve energy because my body is already battling inflammation.

Myasthenia Gravis reminds me that muscles weakened by this disease don’t simply get tired—they become weaker with repeated use.

It seems ironic that one disease tells me I need to stay active, while the other reminds me that doing too much could leave me paying for it tomorrow.

Apparently, my autoimmune diseases didn’t get together to write an instruction manual…they just decided I’d figure it out as I go. 😂

And somewhere in the middle is me, trying to figure out what healthy is supposed to look like.

Unlike many people, I can’t simply push through fatigue. Sometimes pushing through isn’t determination. Sometimes it’s the fastest route to making tomorrow worse.

I know movement is good for me. I know exercise has countless physical and mental health benefits. But knowing all of that doesn’t magically give me the energy to do it.

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🥋 A Different Perspective

Recently, during one of my acupuncture appointments, Dr. March gently suggested that I try Tai Chi.

At first, I thought, “That actually makes sense.”

Naturally, I did what I usually do when I have a question—I started researching. Before I knew it, I had gone down the Google rabbit hole.

The more I read, the more Tai Chi seemed less like exercise and more like learning how to move with intention.

Slow. Controlled. Focused.

Not about pushing harder. Not about keeping up with anyone else. Just moving.

Honestly…that sounds a lot like what my body has been asking for all along.

Everything I read emphasized taking an individualized approach, working with my neurologist and gastroenterologist, exercising during my best energy periods, avoiding overheating, and focusing on movement rather than exhaustion. It also reinforced something I needed to hear: during a Crohn’s flare or an especially difficult MG day, rest isn’t failure—it’s part of the plan.

But then another question popped into my head…

Where do I even begin? Do I find a class? Watch YouTube videos? Is there a version designed for people with physical limitations? How do I know if I’m doing too much…or not enough?

Like so many things that come with chronic illness, it isn’t the willingness that’s missing. It’s figuring out what safe looks like.

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🚶🏽‍♀️ Redefining Exercise

Lately, I’ve been wondering if I’ve been asking myself the wrong question.

Instead of asking, “How do I find the energy to exercise?” maybe I should be asking, “How can I move today without borrowing energy from tomorrow?”

That feels like a much more realistic goal.

Maybe success isn’t measured by how many miles I walk. Maybe it’s measured by whether I stretched today, took a short walk, practiced a few minutes of Tai Chi, or chose movement over perfection.

Maybe movement—not exhaustion—is the goal.

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💜 Giving Myself Permission

Living with chronic illness means constantly adjusting expectations.

Life has a way of changing the finish line.

Today, my victory isn’t crossing another half-marathon finish line. Some days, it’s simply crossing the parking lot without fully losing my breath.

And that’s okay.

“Different season. Different race. Same determination.”

Some days my body will surprise me. Other days it will remind me who’s really in charge.

Maybe my fitness journey doesn’t have to look like anyone else’s. Maybe I don’t have to earn the right to celebrate five minutes of movement simply because someone else managed fifty.

My body has survived more than most people will ever see.

It deserves grace. Not guilt.

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🌻 Final Thoughts

Maybe Tai Chi isn’t just teaching me a new way to exercise.

Maybe it’s teaching me a new way to live.

To slow down.

To listen to my body instead of fighting it.

To celebrate what I can do instead of grieving what I can’t.

I don’t know if Tai Chi will become part of my routine.

But I do know this…

If it helps me keep moving while respecting the limits of Crohn’s disease and Myasthenia Gravis, then it’s worth taking that first step.

As I sit here writing this diary entry, “Get Up” by Get Up by Mary Mary keeps playing in my head.

Maybe that’s exactly what this season is about.

Not getting up to run another half marathon.

Not getting up to prove anything to anyone else.

Just getting up.

Getting up to keep moving.

Getting up to keep believing.

Getting up to keep living.

One day at a time.

One step at a time.

One movement at a time.

Maybe my race looks different now.

Maybe my finish line has changed.

Maybe my pace is slower than it used to be.

But I’m still moving forward.

And as long as I’m moving forward…

I’m still in the race.

If you live with Crohn’s disease, Myasthenia Gravis, or another chronic illness, I’d love to hear from you.

Have you tried Tai Chi?

What has helped you stay active without overdoing it?

I’d love to learn from your experiences because I have a feeling I’m not the only one trying to redefine what movement looks like.

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💜 Thank you for taking the time to read this entry from The Dual Diagnosis Diaries.

Living with Crohn’s disease and Myasthenia Gravis often means rewriting the rules that others take for granted. If this diary entry resonated with you, encouraged you, or reminded you that you’re not alone, please consider liking, subscribing, and sharing this diary entry.

Your support helps raise awareness about Crohn’s disease, Myasthenia Gravis, and the realities of living with multiple autoimmune diseases while building a community where no one has to navigate these challenges alone.

Until next time…

Founder • Author • Advocate • Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries 💜