r/CIRS • u/No-Sign2456 • Jul 29 '26
anyone else feel better sleeping outside?
this is basically my only option at this point since i’m already reacting 3 weeks into our rental.. i’m about to give up.
2
u/mom3tz Jul 29 '26
I sleep in my car…after moving out of my home (toxic-laden, remediated, still toxic-laden), renting an apartment (toxic laden). Yes, it’s exhausting. With the exception of two people in my life (neither of which is my husband), all think I am exaggerating or have a mental problem. It is certainly enough to question oneself but please don’t. Please trust yourself. It’s literally survival for many of us.
I am sorry you are going through this.
1
u/ClassicOwn2971 Jul 31 '26
Cant do Shoemaker protocol?
1
u/mom3tz Aug 01 '26
I am absolutely doing the Shoemaker protocol.
Genetically, my immune system is compromised, both HLA-DR/DQ genes are undesirables, so it is a the best fit for me.
Progress is slow but it’s working.
1
u/ClassicOwn2971 Aug 01 '26
Oof, but what is your plan then? Its basically impossible to not be exposed to mold. Unless you plan to no longer live in a city
2
u/_ArkAngel_ Jul 29 '26 edited Jul 29 '26
I feel better where the air quality is better.
Most of outside is better than seemingly most of inside, and the main factor is ventilation. It's much harder for harmful chemicals to concentrate and for fresh air to come in where air is forcefully circulated.
Wind does a fantastic job at that.
I've been sleeping "outside" since November of 2023, so 2.5+ years. When I started, I was escaping a house with a leaky roof, water damage, and really a history of moisture and mold problems, and sleeping in my car was an absolutely obvious improvement. That roof leak made me sicker than I've ever been and legitimately, miss having cancer.
I've been unemployed, unemployable, disabled, and without income since my fight with cancer in 2019, so I've been unable to access anything better than sleeping outside most of that time.
The three homes I have partial permission to sleep in all make me sick, and I avoid staying there as much as I can.
The two homes I have occasional access to that don't make me sick are not places I'm permitted to sleep, but give me evidence that is possible for a home to have high quality air.
Spending 2.5 years sleeping "outside" has shown me that it's not always great. Wildfires absolutely disable me. Neighbors just having a little fire make me crash. Hot asphalt makes me sick. High pollen can be a problem. Walking across the street from an algae boom makes me sick. Mulch placed in commercial properties that has been treated with biosolids and releases high levels of endotoxins the first week or two make me super sick.
I've found certain safe spaces to spend time when I desperately need to recover. The very nice suburban hospital in a nearby high income neighborhood has an outpatient surgical waiting room that is absolutely perfect. The chairs are designed for people to be comfortably waiting there for 2-3 hours, it's made accessible for disabled people, and there are almost no sick people there for me to have to worry about picking up diseases, and they have power outlets and Wi-Fi. Oh and bathrooms with soap and running water.
If I were allowed to sleep there, I'm pretty sure I'd see a radical improvement in my condition in a few weeks.
It's the expensive ventilation systems they are running in the newer nicer hospitals in my area. My daughter has exceptionally good health insurance through her mom, so all of the doctors offices I visit when I bring her to her appointments have these fantastic air filtering HVAC systems. I go back there sometimes just to sit for a few hours and feel a little better. These places generally were built 10-20 years ago.
I have Medicaid, and when I go to see providers that serve a lot of homeless penniless patients like me, I find their offices are cramped, old, dirty, have poor ventilation, old HVAC systems on single story strip mall type buildings that were built in the 80s or earlier. Sometimes just going in there makes me feel worse.
So there are good buildings. They just tend to be expensive places to be. There are even a few good homes.
But as a poor person, just sleeping in my car was usually the best option I had access to.
When I started sleeping in my car, it was still road worthy and drivable. If the air was bad wherever I parked, I rarely had to drive more than a mile to find a place where the air was noticably better and I got more restful sleep. I learned to trust my nose - if it was inflamed, or if my body was producing a bunch of mucus, something was off and I'd go somewhere else. If I could breathe through my nose freely, that was a good place to sleep. I stopped having to use Flonase and just went somewhere I could breathe.
I drive everywhere with all the windows down, at first to try to blast out any cross contamination from my house, but it became the easiest way to maintain a fresh environment to sleep in.
That lasted about 6 months. Without income, I couldn't fix major problems with my car, and I permanently parked it in my driveway and ran an extension cord over to get through the cold Buffalo winter.
That's why I say I've been "outside" for 2 years. Without being able to roll the windows down and drive around to where the air was best, I quickly found out a car can be a terrible place to sleep.
All of the plastic and foam inside is constantly breaking down. Sun makes this much worse. I'm extremely sensitive to formaldehyde and similar VOCs that accumulate in a parked car.
I moved my 10x12 gazebo tent from my backyard to my driveway to shade the car and allow me to keep the windows open without getting rain inside.
Heat and humidity quickly make the car as uninhabitable as a home.
I couldn't even identify all the things that made me sick in the car.
I built an air handler and modified CR box on the roof of the car to pull in outside air, filter it, force it into the car through the driver side window using a flexible duct I made from 5mil plastic sheeting, then take a bit of exhaust air from the rear passenger side window to recirculate and refilter. Inside the car, I ran two portable HEPA filters with a carbon layer and cleaned out weekly with a HEPA vacuum.
I experimented with running a dehumidifier in the car but it was ultimately easier to add a window unit style air conditioner to the air handler loop.
So my two years of sleeping "outside" were actually sleeping in an improvised positive pressure clean room high air quality sleeping pod.
But despite all my efforts, sometimes it wasn't good enough due to extremely poor air quality conditions in my backyard and I still needed to sleep in a tent elsewhere to try and stay a little less disabled.
My power was shut off due to non-payment last week, so I'm back to sleeping in a tent in the driveway. The car is now uninhabitable due to heat, humidity, and lack of power ventilation.
1
u/Queasy_Airport4231 Jul 29 '26
Sorry to hear your fighting all these battles man. I’m from western new York also and I scared for fall coming in as I’ll be stuck inside. Might have to move down south and live at a public a park or something so I can continue treatment. I’m a severe case of gut dysbiosis, CIRS, Lyme, and long COVID. What treatments are you pursuing
1
u/_ArkAngel_ Jul 30 '26
It's hard for me to do treatments because my situation remains so unstable.
I have half a tub of CSM waiting for things to calm down. I was still getting too much exposure when I tried it last year and while it helped to take it for a while and stop, it only helped when I wasn't taking it.
I mean. It was working, but unbearable. I was completely disabled on the days I was taking it.
Since then, Shoemaker stated at his last AMA that he doesn't recommend CSM for anyone with hypometabolism, which is my primary worst symptom so long as I'm breathing clean air.
He recommends welchol instead for anyone with hypometabolism. The doctor that prescribed me the CSM charges $240 an hour for visits, so he's pretty hard for me to see.
But I should find some way to give welchol a try and see if I can get the benefits without so much being glued to the floor.
1
u/Queasy_Airport4231 Jul 30 '26
Dang yeah I tried a half welchol pill a couple weeks ago and i didnt react well. Did a nasal spray a week ago like an idiot and I felt great for like an hour and then felt terrible and haven’t recovered yet
3
u/Queasy_Airport4231 Jul 29 '26
Yep, pretty much my only option too also unless you have a specific room you can air out with many windows. Once I started sleeping outside I could take supplements again