car camping with complex chronic illness
This post provides tips and tricks for car camping with complex chronic illness.
If you have a complex chronic illness like MCAS, you might have trouble eating in restaurants, you might react to the bleach in bedding and towels in hotels, and the pressure change from air travel makes you sick. How do you travel successfully? Read on for my time-tested hacks for car camping with complex chronic illness.
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In this post, I share tips I’ve found that have made car travel doable with complex chronic illness, which in my case means primarily Mast Cell Activation Syndrome (MCAS).
When I first became so debilitated, my world closed down. I couldn’t tolerate any scented products, moldy or water-damaged environments, dust, animal dander, or wifi.
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.
Check out this post on how to manage MCAS.
When I took my daughter out of state for medical treatments I tried staying in “suite” hotels that offered kitchenettes. That way I could bring or cook most of my own food and have control over my dietary restrictions. But I soon realized that hotel suites often were a haven for mold and pet dander. Families who needed to stay in these types of accommodations often traveled with pets, who left behind odors and stains that the hotel management then aggressively cleaned with bleach, or worse, frequently shampooed the carpets so that they never sufficiently dried out. On entering several suites I was met by a damp carpet that stayed wet during my whole stay. I reacted to these rooms with terrible insomnia and sometimes had full-blown mast cell flares.
Then I tried staying in a rural bed and breakfast, which, though unplugged, quaint, and otherwise comfortable, was filled with scented bedding, dust mites, and mold spores. Even with well-informed hosts who were willing to cater to a gluten-free diet, I couldn’t eat any of the food that was offered because of my histamine issues.
Then I tried several retreat centers that offered individual cabins for retreatants. The situation varied based on who ran them and how the facilities were cleaned.
On one occasion I was proudly led downstairs to a basement apartment past buckets collecting rainwater drips from the ceiling below the leaky roof. I politely declined that space, citing my serious mold issues. They then took me to a hermitage housed in a camp outbuilding, that was basically fine but had been aggressively cleaned with bleach. I managed to stay there with the windows open but had no kitchen facilities.
I started traveling with my AirDoctor air filter, and that helped quite a bit. It made cleaning product residue, dust, and mold spores less of an issue. But it was cumbersome to haul the air filter to some locations.
One such cabin was on the grounds of a summer camp run by a religious organization that required lugging your gear from the parking lot by wagon or sled (in winter) over a half-mile of uneven terrain. The other issue with that cabin was the mold from a leaky water cooler (always check underneath the sink and countertop lip), and bedding that was washed in extremely fragranced detergent.
I stayed at that camp in the hermitage cabin for several retreats, hauling my own bedding, towels, and AirDoctor, and was able to make it work. But I just didn’t sleep!
So, I backed up my thinking and asked, “What can I tolerate?” 1. Being at home. 2. Being in my car. 3. Being outside.
Okay, so next I tried tent camping at a beautiful state park in Wisconsin. As the ground cooled after dark I was soon reminded about why I hadn’t tent camped in years: chronic back pain. Ouch! At 11:38 p.m. I dragged my sleeping pad and bag into the car and created a make-shift sleeping arrangement that was warmer and drier, but only slightly more comfortable.
In the wee hours of the morning while I lay awake trouble-shooting what wasn’t working about this situation I figured out the problem. When the seats are flattened in the rear of my Subaru Forrester there is a hump where the rear seats hinge, making it impossible to lay them totally flat. I eventually figured out a diagonal sleeping position that minimized the hump problem, but I was still miserable.
But I was undaunted! My primary way of filling up my soul is in nature, and I was determined to find a way to camp in my car!
I ordered a 2-inch Dunlop latex mattress topper and tried that out at another stunning Wisconsin campground. I could still totally feel the hump and didn’t sleep for two nights. So my daughter took that mattress topper to college.
Then I ordered a 3-inch Dunlop latex mattress topper and tried it out at yet another amazing campground. It was better! But I was still uncomfortable with that hump under my back and barely slept.
While not sleeping I created a design in my mind of a sloped piece of wood that could even out the “hump” situation and my awesome husband built it for me out of a piece of thin wood and some 2x4s. This almost eliminated the hump! With the addition of a yoga mat between the wooden slope and the mattress topper, I was comfy at last!
Then I started trying to figure out the other issues to make camping in my car more comfortable. Even though my windows are tinted I hated the idea of anyone being able to see into my car. I wanted more privacy, and I didn’t want to have to trudge to the pit toilet if it was pouring rain outside.
I googled “sleeping in my Subaru forester,” and started watching vlogs by solo female van-lifers and car-lifers who had figured out some of the issues I was struggling with. I got a roll of Reflectix and made custom window covers, and covered the windshield with a foldable sun shade.
I tried a few car/bathroom options and settled on a re-purposed bucket with a lid (this one fits my butt right) and commode liners that do the trick and don’t smell!
The bucket theory offers a helpful analogy for understanding symptom reactions with MCAS.Think of your body as an empty bucket that you want to keep from overflowing. Different foods and activities fill your histamine bucket at different speeds but they combine to form the total level of histamine in your body (how full your bucket is). A fuller bucket means you have more histamine symptoms. When you manage triggers, reduce exposure to known triggers, and take medications and supplements to reduce histamine, you can manage the level of your bucket.
Knowing your symptom progression in a symptom flare is the key to developing your own rescue plan. In this post, I discuss how to determine your own symptom progression. Once you know what typically happens in your symptom progression you can design a rescue plan to address those symptoms.
Want a tool to easily keep track of your symptoms? Sign up for my newsletter and you will receive my free 50-page ebook of lower-histamine, grain-free, sugar-free recipes, my free symptom log, and a free two-week meal plan!
Gradually over the summer months, I fine-tuned what didn’t work about sleeping in my car with solutions that made it awesome!
Healy is an individualized specific microcurrent device (ISM) that runs beneficial electrical currents directed by an app on your phone. Healy can be used to magnify your intention and to get the most out of your life. Check out this post for more about Healy. And this post provides some tips and tricks for Healy.
I provide one-on-one in-person and remote chronic illness and caregiver coaching and Sacred Self-Healing Sessions based on the Sacred Self-Healing Method, a proven novel co-creative healing modality detailed in my Books.
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The preceding material does not constitute medical advice. This information is for information purposes only and is not intended to be a substitute for professional medical advice, diagnosis, cure or treatment. Always seek advice from your medical doctor.
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