Dear Diary,
Nobody talks enough about how exhausting it is to plan a life around a body that can change the rules without warning.
Living with chronic illness means even the simplest outing can begin with a full risk assessment—one conducted entirely inside my head while everyone else is simply grabbing their keys and walking out the door.
Meanwhile, I am calculating:
💜 Where are the bathrooms?
💜 How far will I have to walk?
💜 How long will I be away from home?
💜 What can I safely eat?
💜 Is there somewhere I can sit and rest?
💜 Do I have my medication, wipes, extra clothes, and emergency supplies?
💜 Will I have enough energy to get there, enjoy myself, and make it home?
💜 Am I going to pay for today because I spent last night awake with pain, cramping, diarrhea, breathing difficulties, or muscle weakness?
These are not negative thoughts.
They are survival calculations.
💜 Every Plan Comes With a Backup Plan
I make plans because I still want to live.
I still want to spend time with the people I love, travel, eat good food, laugh until my stomach hurts—the good kind of hurt—and experience the world beyond my bedroom.
But every plan comes with conditions.
I can wake up feeling capable and lose that confidence before I finish getting dressed. Crohn’s can turn breakfast into an emergency, while MG can make walking across a parking lot feel like I accidentally registered for an endurance event.
Sometimes one roommate acts up. Sometimes they coordinate their nonsense like they held a meeting without inviting me.
Either way, my body usually gets the final vote.
I make plans with hope, prepare for the possibilities, and wait to see whether my body agrees.
🦋 What You See Is Only Part of the Story
People see the moments when I smile, laugh, travel, work, take pictures, and show up.
They do not always see the preparation required to make those moments possible.
They do not see me studying menus before leaving home, locating bathrooms before I need one, calculating the distance from the parking lot, monitoring every change in my breathing, or wondering whether my muscles will continue cooperating.
They do not see the fear that comes with being far from home when symptoms begin.
And they do not see what happens afterward—the canceled plans, the extra sleep, the pain, the weakness, or the days spent trying to replace the energy I borrowed just to participate.
A photograph captures the smile.
It does not capture everything it took to get me there.
💜 Sometimes Showing Up Is the Victory
There are days when I can do everything I planned.
There are days when I have to change the plan.
And there are days when surviving the day is the entire accomplishment.
That does not mean I am unreliable, antisocial, difficult, or unwilling to try. It means I live in a body affected by two unpredictable chronic illnesses—and neither Crohn’s nor Myasthenia Gravis cares what I wrote on my calendar.
I am learning that changing plans is not failure.
Leaving early is not failure.
Resting before I reach my breaking point is not failure.
Choosing not to go because my body is already struggling is not failure.
Sometimes honoring my limits is the strongest decision I can make.
🌻 I Am Still Living
Chronic illness requires preparation, flexibility, patience, and a sense of humor—because if my roommates insist on changing the itinerary, I reserve the right to make jokes about their terrible planning skills.
I may have to plan differently, move more slowly, or recover longer than other people realize.
But I am still here.
Still making plans.
Still finding joy.
Still creating memories.
Still showing up whenever I can.
And sometimes, simply surviving the day really is enough.
🎵 Music Playing…
“Hold On” — Wilson Phillips
Because some days, holding on does not mean pretending everything is fine. It means giving myself permission to adjust the plan, rest when necessary, and trust that one difficult day does not define my entire journey.
💭 Reflection Corner
Living with an unpredictable body means accepting that preparation cannot guarantee control.
I can make careful plans, pack every emergency item, and account for every possibility—but my body may still change the rules.
What I am learning is to listen, adjust, and remember that my worth is not measured by how much discomfort I can tolerate or how successfully I can hide it.
You may only see the moment I arrived. You may never know how much strength it took for me to be there.
If you live with an unpredictable illness, what invisible calculations do you make before leaving home?
Until next time, remember: changing the plan does not mean you have stopped living. Sometimes it simply means you are learning how to live in a way that honors the body carrying you through it all.
💜 The Dual Diagnosis Diaries
Where living with Crohn’s Disease and Myasthenia Gravis meets honesty, resilience, advocacy, and real life.
Founder • Author • Advocate • Future Wellness Coach – Kia Lorice
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