What It's Like to Have a Chronic Illness Flare in a Van Versus a House

It happened. After doing this van life thing for about a month and a half, I had my first major chronic illness (POTS/Ehlers Danlos Syndrome) flare.

Van life has brought a number of rough days, but I expected my body to struggle as it adjusted to the elements and jungle-gym style living quarters. Aches, pain, and exhaustion have been part of the daily grind since living in a van, and they were part of it when I lived in a house, too. Just last week, however, I was feeling pretty thankful that I hadn’t had a major flare in the van consisting of exorcist-like vomiting, not leaving the bed, and total body nerve shocks. Yet.

And then, as if on cue, it came this week. For those who don’t live with POTS and EDS, a flare can be a bit like the flu, plus food poisoning, topped off with a medieval stretching machine. Maybe throw a migraine in there for fun.

 

So, what is it like to endure a flare when living in a van versus a more traditional sticks and bricks home? 

Nausea and vomiting are almost always central players in my flares. On tough days, I vomit most solids and even struggle to keep liquids down. This leads to dehydration, malnutrition (if it goes on long enough), and a host of other related symptoms. Thus, staying hydrated and trying to get some food down is always a priority when I am in a flare. I didn’t always have what I needed in terms of food and liquids on hand when I lived in a house. But I did have a grocery store five minutes away, a husband who could usually run out, and grocery delivery when all else failed. In other words, I could get what I needed when I needed it.

In a van, that’s harder. During my flare, we were camped about six miles down a rough dirt road and our food storage is limited to a cooler and a couple of baskets. Unfortunately, my flare also hit on a day when we were already running low on groceries. The only things I could stomach were small sips of water and the crumbs of some tortilla chips. I longed for a ginger ale to settle my stomach. I had to do without. We did have just enough oatmeal left for one serving that I was able to stomach later in the day.

Winner: Sticks and Bricks

It is definitely easier to get what you need in terms of food when you live in a house and know the resources around you. Additionally, packing up our van and driving down the bumpy dirt roads to go to the grocery store was not a realistic option when I was that ill. However, I could have fared much better if we had planned to keep a reserve of the typical things I know help my nausea in the van. I’ve learned my lesson, and have already made a list of sick day items we will pick up on our next shopping day.

Toileting is closely related to nausea, but I’ll spare you the details. At home, the bathroom was about 20 feet from my bed, probably much like your home situation. In the van, the toilet is normally in our potty tent outside the vehicle, but it is a camp toilet that can be moved around. When I was sick, you better believe that sucker was right next to the bed.

Winner: Van

I actually preferred the van toilet because I didn’t have to walk (or crawl) the 20 feet to get to the bathroom like I did in my traditional home. When you are that ill, even a few feet can feel like miles.

As mentioned above, getting around when you are violently ill can feel like a monumental task. In the past, I have spent hours debating whether or not to get out of bed for an extra blanket, a drink, a phone charger, an ice pack etc. etc. In a home, there are further distances to travel to retrieve these things than in a van. In the van, I was actually able to do most of it from bed because most of our things are stored on shelves above the bed or directly under it.

Winner: Draw

While everything I need is much closer in a van, it is also a bit more precarious to navigate. I could reach most things from bed, such as my medications, clothes, blankets, and fans. However, if I did need something out of reach I had to navigate the three-foot drop out of bed (with a stool). This can be tough on someone who has shaky Ehlers Danlos Syndrome joints. It was fine as long as I minimized the up and down, and took the step out of bed very slowly.

Much like when the flu hits, my body will rapidly fluctuate between bone-numbing chills and profuse sweating when I am in a flare. In a home, I was able to adjust the air conditioning or heat to meet my body’s temperature needs. In a van, I am slightly more susceptible to the outdoor temperature. This was one of my major concerns of this lifestyle. We did a few things during our planning phase to make the temperature in the van as comfortable as a possible:

• We invested in some high-end insulation for the van
• We have placed two fans by our head and feet to encourage air circulation when we sleep.
• We have an assortment of blankets and awesome sheets that regulate temperature and can be added/removed as needed.
• We decided to be fair-weather chasers (i.e. we plan our destinations around weather that is not too cold and not too hot).

Winner: Sticks and Bricks

While the van temperature wasn’t a major issue this time, it could be a problem if the outdoor weather were more extreme. Nonetheless, it is slightly less convenient to accommodate my body temperature in the van where I can’t simply adjust the thermostat.

Pain is very much a part of living with chronic illness, and in many ways I’ve grown used to it (as I know a lot of you have). I tend to “just put up with it” because a lot of times that seems like the only option. Other days, I have complete meltdowns due to pain.  Occasionally, I try to mitigate it with medications, ice packs, heating pads, Icy Hot, and mind control (OK, that one hasn’t worked yet).

Winner: Draw

All of the things I use to mitigate pain in a house, I can also use in a van. This may be different for someone who has more intricate pain management protocols.

Distraction is, perhaps, one of the best pain management tools for me. I use different methods depending on the level of pain (i.e. migraines usually mean I listen to soothing meditation recordings with my eyes shut if possible). One of my favorite methods is binge-watching reality TV. No shame. In all seriousness, this works because it is just light enough, but still oh-so-dramatic that it can take me out of my own experience. It also doesn’t require a ton of focus, which can be difficult on days like these.

Winner: Van

I almost always watch these shows on my phone because I can move it to accommodate the position I am in. The van is a winner because I was able to MacGyver a handy little phone holder. It is simply a pop-socket holder placed on the bottom of the shelf above my bed, and a piece of string to hold the top of the phone at the perfect viewing angle whether I am lying on my back or side. My bedroom at home was far too large for such contraptions.

I almost always get down on flare days. I start to feel guilty for not being more productive with my day. I profusely apologize to my husband for picking up the slack. My anxiety builds as my to-do list gets piled onto the next day. Or the next. Or the next.

When I was in a house, I also had a more traditional job to pay for that house and build my career-oriented life. It didn’t work with my body, and sick days either meant calling out of important obligations, or pushing through when I certainly should have been in bed.

Winner: Van

My husband stopped me when I muttered my first apology for my flare in the van. He said, “This is why we’re doing this life. So you can take days like this when you need them.” While I am working, my schedule is much more flexible than it used to be. I try to plan ahead enough with my work so that I have some margin to accommodate my health when these days arise. I was grateful for the reminder.  Plus, when I get to move my home to look at views like these, I appreciate them even if I can only get outside for a few minutes with a lot of help.

A sticks and bricks home was a more convenient environment to manage my chronic illness. When sick in a van, I certainly miss being able to get exactly what I need when I need it. However, I would choose a van because the overall lifestyle provides the type of flexibility I need to be able to experience life while still having a fairly well-controlled environment to take care of my health.

The comfort level of a van is also highly dependent on your rig. While we opted for many budget options this time, we think we will invest in something more comfortable in the near future that includes a reclining area, refrigeration, and a more permanent indoor toilet situation. Until then, I’ll remind myself that I would likely have this flare no matter my living situation, and I might as well be sick with a view.