Your Story Holds the Clues: Why Tracking Can Change Everything When You Live With MS

“It was like trying to describe a storm while standing in the middle of it.”

Finding the clues…

“It took me years to realise the doctors weren’t missing something.  I was.

I was missing the data of my own life.”

When I first heard the words “multiple sclerosis,” my brain froze.

I was 25.

Just starting to live what I thought was my real adult life … working, traveling, buying books I’d always dreamed of reading, paying for my own drinks when I went out with friends.

I was supposed to be living my best life, not pressing pause on it.

But when I heard those words “MULTIPLE SCLEROSIS” everything stopped.

I had always believed I was the expert on my own body. Up until then, it did everything I asked of it. And suddenly, I didn’t understand it at all.

“It was like trying to describe a storm while standing in the middle of it.”

The Subtle Clues My Body Was Sending

The changes didn’t happen overnight. There wasn’t one big dramatic moment.  It started quietly.

First came a tingling in my legs. Then a stiff muscle on one side, even when I hadn’t exercised.

A strange burning sensation when touching something cold. Again, just on one side.

And then, the fatigue. The kind that hits out of nowhere, like a power outage.

One moment I was dancing with my friends, and the next, I could barely stand.

Then came the day I woke up with a black hole in my vision…  and I couldn’t hide it anymore. Something was really wrong.

The Endless Appointments (and the Missing Piece)

From that moment on, my life became a series of doctor’s appointments, scans, and tests.

I took everything I was told for granted because I didn’t know better.

I was clueless about my own body. How it worked, what it needed, and how to support it.

I tried to answer every question my doctors asked, but honestly? I was too confused and too tired to remember what truly mattered.

It all became a blur,  a mix of sensations and half-forgotten moments that I couldn’t put into words.

“It took me years to realise the doctors weren’t missing something.  I was.

I was missing the data of my own life.”

The Realisation: Facts + Feelings = Power

Doctors, and especially neurologists, are brilliant scientists.

They rely on facts, figures, and test results to do their best work.

But here’s what I learned the hard way: the information they really need often comes from you.

They can analyse scans and lab results.But only you can track how you actually feel, when symptoms flare up, or what helps you recover faster.

Once I started gathering that data — my own personal data — things began to make sense.

“I stopped being just a patient and started becoming my own ally.”

What I Wish I Had Tracked From Day One

Here’s what I’ve learned to pay attention to over the years:

⚡️ Symptoms

Track the evolution of your symptoms — both in intensity and duration.

I learned about the 24-hour rule: when symptoms last longer than 24 hours, they should be reported to your neurologist.

Shorter ones still matter — they help you understand your patterns, even if your neuro doesn’t count them as a relapse.

💤 Sleep

The quality and quantity of your sleep can change everything.

I discovered that good sleep doesn’t magically erase fatigue, but poor sleep almost always makes it worse.

Tracking helped me see what improves my recovery time.

🍎 Diet

The food you eat and how your body reacts to it are powerful clues.

Noticing patterns. Like when certain foods trigger inflammation, or when eating regularly helps stabilize energy.  This gave me more control.

Nutrition isn’t about restriction; it’s about giving your system what it needs to fight the battle alongside your treatment.

“You may not control the diagnosis, but you can understand your story — and that’s where your power lives.”

Your Story Holds the Clues

You may not control your diagnosis, but you can understand your story, and that’s where your power lives.

All this data you collect;  from your symptoms to your sleep, food, and movement ; provides valuable insights.

Not only for your doctors, but for you.

It helps you:

💡   Notice the tiny details that draw the big picture

💡 Make connections between what you feel and what you do

💡 Adapt and create your own version of living well with MS

Each note you take, each pattern you spot, is a step toward reclaiming ownership of your body and your story.

Because living with MS isn’t just about managing symptoms.  It’s about understanding yourself in a whole new way.

Ready to Start Tracking?

If you’re ready to see what your own story is trying to tell you, I created a free set of MS Trackers to help you start noticing your patterns.

They’ll help you track your sleep, energy, and symptoms;  so you can connect the dots and start taking back control.

And if this resonated with you, stay connected. I share raw stories, gentle reminders, and practical tools every week in my free newsletter — all designed to help you live well with MS, without sugarcoating or overwhelm.

You’ve got this. And I’ve got you.

Vanessa