I hear this a lot from other patients considering avoidance: “But I’m not outdoors-y” or “I’m just not a tent person!” A lot of biotoxin avoiders seem to tolerate the elements really well, and have even talked about spending summer in hot/humid places to detox more.  Let me tell you something.  Even before I got sick, I never slept well in a tent.  The first time I slept well in a tent was 2 winters ago, in my backyard with 2 infrared space heaters and me in the middle.  This was after I gradually became unable to sleep inside my house.  Yes that’s a fire hazard, but that simple modification was the only thing that allowed me to give this a fair shake.  If I couldn’t sleep in my tent comfortably , I would never have realized how much better I felt sleeping outdoors.

However, my first real trials with extreme avoidance were totally and utterly discouraging.  My first trial was in a tent in 30-40 degree weather.  I barely got any sleep, and almost gave up on the whole thing.  Several months later, I gave it another shot & went to a desert where it was 90+ during the day.  I’m not exaggerating when I say despite getting sleep this time in a tent, I felt like I was gonna collapse from a heat stroke at any given moment.  When I finally starting reaping the benefits from avoidance later in the winter, I thought my first 2 trial failures were due to not staying out there for long enough.   Now that it’s summer again, to my surprise I feel a lot worse in the extreme heat: really lethargic, OI is probably worse, more shortness of breath.  Now temperature sensitivity is one symptom I actually expected to go away almost immediately after hearing the experiences of other avoiders, but not only did that not happen but it still hasn’t resolved 5 months after I regained my ability to exercise.  In hindsight, it was a terrible idea to begin this exercise outside my comfort zone.

Here’s my 2 cents to anyone with extreme temperature sensitivity that’s considering avoidance,this may muck up your ability to see changes, and that trying avoidance within your comfort zone may be a more productive exercise.  The camping industry has evolved rapidly.  Air mattresses are no longer considered comfortable.  REI 2.5 inch (height) camping pads are as comfortable as any mattress I’ve ever used, and if you’re sensitive to cold, get a larger tent to accommodate a space heater.  Don’t try to brave the elements if you’re not cut from the same cloth as some others.  We’re all different here, even if we’re very much the same.  Wind is a big issue for sound sensitive folks like me, so if you’re tent camping, splurge on a 3.5-season tent or even a 4-season tent which is built to withstand wind without flapping around all night.  Even if you get a trailer, if it’s small it’ll rock around in the wind so stabilizing jacks are a must.  Even then, wind blowing on a metal trailer is much louder than blowing on a house.  It can be downright frightful when the wind kicks up to 20-30 mph.  So I invested in a pair of Bose noise cancelling headphones, which were $270 from a Bose outlet.  That may seem like a lot, until that first night you start swearing at your inability to ever fall asleep with the wind blowing and traffic at a 9-iron distance, and then turn on the headphones to hear a world you don’t hate again.

More on the space heater: a radiant Holmes heater ($50 from Target) allowed me to feel comfortable anywhere from 14 degrees to 60.   It’s also super quiet.  Convection heaters didn’t work for me because they’re loud and they smell.  It’s much harder to reduce heat to your comfort zone because portable A/C are always loud.  An evaporative cooler might work if you’re in a dry area, but probably wouldn’t lower the temp by more than 5 degrees.  Thus for me at least, my comfort zone for desert camping seems to be anytime outside of summer, so long as I have my space heater and 2 sleeping bags.  Summer will need to be spent up north, and I happen to be en route to Grizzly nation!

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About CityChanger

This blog is about my participation in a clinical trial for ampligen, an experimental immunomodulatory and antiviral drug, for ME (Myalgic Encephalomyelitis).

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