None of This Was Planned

What We Learned About RV Life, Multiple Sclerosis, and Figuring It Out as You Go

By Kreg and Charlene | Our Voyage with MS

We are Kreg and Charlene, and we live in a 2022 Entegra Vision XL 36A. Behind us, we flat-tow a 2023 Ford Ranger 4×4 Sport for the roads the motorhome cannot handle. We have been full-timing since April 2022, and this March marks twenty years since Charlene was diagnosed with Multiple Sclerosis.

If you are reading this because you or someone you love has MS, a disability, or a chronic illness, and you are wondering whether RV life is even possible, we want to answer that question directly.

It is. And here is what nobody told us: we did not need a roadmap. We did not even know we were doing it right.

It Started With a Hurricane

August 13, 2004. Hurricane Charley makes landfall in Charlotte County, Florida. Our houses were in North Port, right on the border. Close, but not too close. When the storm passes, the neighbors come out to check on each other. I pulled lawn chairs into my driveway, mixed up a batch of margaritas, and broke out the red Solo cups. Somehow it turned into a party. That is what you do in Florida.

Charlene was one of those neighbors. We had lived next door to each other for two and a half years and had never actually met. The hurricane introduced us.

We became a couple in 2005 and got married in 2006. And in January of that same year, Charlene was diagnosed with MS. At the same time, she was let go from her job. Her symptoms had been affecting her work, and now there was a name for why. Same moment. Crappy, perfect timing.

We did not sit down and make a plan for how to handle MS. We just started handling it. Daily injections became part of the routine. Life continued. We went to Disney. We had annual passes to Busch Gardens. We traveled to Germany to visit family. MS was part of the picture. It was always part of the picture. But here is the thing we did not fully understand until much later: it was also pointing us somewhere. Every adjustment we made, every time we asked how instead of whether, it was moving us in a direction we never would have chosen on our own. As crazy as it sounds, in a way, it was a blessing.

The Question Changed

By 2014, the drive from North Port to Tampa was already taking too much out of Charlene before we even got through the gates at Busch Gardens. We were not facing the end of something. We were facing a question we did not know how to answer yet.

We stopped asking how to keep doing things the same way. We started asking how to do them differently.

That shift matters. It did not feel like a breakthrough at the time. It felt like necessity. But looking back, it was the most important turn we made.

In 2018, we bought our first RV. A humble Class C. We had no idea what we were doing. We just knew that if we could bring the home with us, we could control the pace. We could stop when we needed to. We could skip the part where Charlene arrived somewhere already exhausted.

We upgraded to a Class A in 2021. And then on February 28, 2022, someone called and asked if we wanted to sell the house. We said yes before we thought about it. Papers signed March 4. House closed April 13. On the road full-time. I was still working, but I retired in October of 2022.

What We Did Not Know We Were Building

Here is the thing about the system we built. We did not build it consciously. We built it by paying attention.

MS affects energy. Not just physically, but the whole calculation of a day. Heat makes it worse. Big events cost more than they appear to on the front end. You cannot simply rest your way back to full. You have to manage what you have with intention, and you have to start managing it before the warning signs show up.

Part of my job became learning to read those signs. Watching. Adjusting the plan, before Charlene had to ask me to. Not because she cannot advocate for herself, but because the earlier you catch it, the less it costs.

We did not have a name for any of this for a long time. We just lived it. And when we started explaining it to fellow RVers, something clicked. They already understood the language. When your rig runs on solar and batteries, you know exactly what it means to manage capacity, watch for drain, and protect the system from overload. The RV community did not need a lot of explaining. They just nodded.

That nod matters more than it might seem.

Here is something we have noticed. The RV community and the chronic illness community have more in common than most people realize. Both are widely misunderstood by the outside world. People look at Charlene and say she looks fine. People look at our rig and say it must be nice to be on a permanent vacation. Neither one of those people is seeing what is actually there.

Living with MS means carrying something invisible that shapes every decision, every day, every plan. Full-time RV life means carrying a reality that most people cannot picture from the outside. Both of these communities know what it is to be looked at and not quite seen.

So when an RVer hears our story, there is no flash of pity and no polite smile that moves on by tomorrow. There is recognition. They carry their own version of it. They get the weight of keeping a complicated system moving through the world with grace, day after day, without needing anyone to fully understand it.

They do not see a disabled person. They see a fellow traveler doing the work to keep moving.

You Do Not Have to Go as Far as We Did

Here is something else nobody said to us, and we want to say it clearly.

You do not have to sell everything and go full-time. That was our path. It is not the only one.

Start small. Rent an RV for a weekend and see how it feels. Borrow a friend’s camper. Plan a two-night trip an hour from home. Become a weekend warrior. Become a some-timer. Do what you can, at the scale that makes sense for where you are right now.

The point is not the size of the rig or the number of miles. The point is that you do not exclude yourself from this life because of a diagnosis. MS changes the how. It does not have to change the whether.

Force nothing. Do it small if small is what you have. Just do it.

A Diagnosis Is Not the End of the Road

March is MS Awareness Month. This March marks twenty years since that MRI showed 24 lesions and a doctor handed us a word we had to learn how to carry.

We are not telling this story because everything is easy or because the road fixed everything. It did not. Some days are hard. Some miles cost more than others. Charlene still feels guilty when her needs slow things down. She still asks me if it is OK before she takes a nap. Twenty years in.

But a diagnosis is not the end of the world. It is not the end of the road. It is a recalibration. The question is not whether you can still have a life. The question is what that life looks like now, and whether you are willing to build it a little differently than you planned.

We figured it out by living it. We did not know we were doing it right. We just kept going.

You can too.

Let’s see the world, one charge cycle at a time. 🧡⚡