Notes from Connie 🌾

A Life With Limits? Living With Multiple Chemical Sensitivity (MCS)

My Limits Set Me Free

Did you know I have Multiple Chemical Sensitivity (MCS)?

If you said ‘No’… you can’t say that anymore!

This is my personal story - it is not medical advice...

MCS isn't easy to explain. To make it more complicated, each person can experience MCS differently.

I'm not a doctor… I'm just someone who's had this condition for decades. Some seasons are better than others but it's never fully gone.

This is just my story, sharing how MCS affects my everyday life, and how it led me down an unexpected path.

What Is MCS?

First of all, whether it’s called ‘sensitivity’ or ‘sensitivities’ - it’s referring to the same life altering condition.

Other names include:

The names change and new names get added... but the reality stays the same:

Everyday chemicals and pollutants trigger allergic-type reactions in my body.

MCS is not a true allergy but that's the closest comparison.

The gist of it is, I struggle to live a 'normal' life in a world filled with chemicals and pollutants.

My Common Triggers

Reactions can happen from touching, inhaling, ingesting, or just being near:

Even brief exposure can cause issues - which is why most public spaces aren't safe for me.

How My Body Reacts

MCS reactions vary from day to day but here are some of the symptoms I deal with:

Thankfully, anaphylaxis only happened once... but it needs to be mentioned.

Sometimes the symptoms hit instantly. Sometimes they're delayed. Either way, they stack up and the longer I'm exposed to a trigger… the worse it gets.

What Makes It Worse

My reactions ebb-n-flow but here's what tends to make them worse:

I believe my immune system plays a big role in how bad a reaction gets and how long it takes to recover.

When the Doctors Didn't Help

I saw two allergists over the years. One put me on multiple pills, sprays, inhalers, you name it. When that didn't help, he doubled the doses. The second allergist, after several months of working with him, ghosted me completely - no answers, no return calls.

Bottom line?

Medication didn't help. Avoidance did.

The only sure way to stay safe is to avoid my triggers.

When Everything Changed

An Alternative Doctor determined I most likely had MCS since birth. But, growing up, I didn't know what it was. I thought rashes and weird reactions were normal.

Everything got worse in 1990 after my (now ex) husband and I installed new carpet throughout our house.

The smell was atrocious so I added a few plug-in air fresheners to mask the ew carpet smell… big mistake!

I started having nonstop symptoms:

Then I started reacting in public, at work, in stores… everywhere.

My body couldn't handle it anymore.

That was the tipping point.

What MCS Stole From Me

Since then, I've had to rethink my life from the ground up.

Living with MCS meant giving up a lot:

It was lonely. Overwhelming. Defeating.

But I was a single mom and giving up wasn't an option.

How I Found a Way Forward

The shift came from an unlikely source... my daughter’s 8th grade RV trip.

She came home glowing and said, “We should get an RV!”

I gently smiled at her (while laughing inside). I was a Holiday Inn kind of gal... not a camper… I don’t do bugs and I don’t poop in holes!

But her idea stuck with me.

Eventually, I transitioned into van life. It wasn't my dream but the reasoning was simple... most hotels and houses felt more dangerous than whatever lurked ‘out there’.

Living a nomadic lifestyle changed everything…

I can’t say this lifestyle is without issues (in terms of MCS). And van life itself isn’t always easy. But this lifestyle lets me breathe... literally.

MCS Still Shapes My Life

I still have reactions. I still have limits. I still have days where I push too far… because I'm human.

But now I have a setup that is more supportive of my health. I never expected to live nomadically... but it works for now.

MCS turned my life upside down. But it also opened a door I never would've walked through otherwise.

Thanks for letting me share my story with you,
Connie 🌾

#Body Notes #Van Life