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I’m in a Mold-Induced Downswing OR Why Life In My Body is Hard

The first month living in my car was fun. The fresh air and sunshine did me good. The second month was tolerable. The strain of the new lifestyle started getting to me, but I was still functioning pretty well. The third month was hard. Staying dry, mud-free and cheerful (or at least keeping a positive attitude) was difficult.

I’m a week or so into Month Four. I have been spending more time in a house. My new friend K and I are cooking together, sharing food when either of us has it, working on getting our dogs to mingle well and hanging out a fair amount. I still sleep in the car in the wild, but I spend a fair amount of time at the house. I know the house isn’t healthy for me (and possibly her). It’s a 1940’s house with an ancient tin can roof that has probably leaked for years.

But the lure of a better way to store food than drowning it in melted cooler ice, a sturdy stove that doesn’t require constant supervision to be sure it doesn’t fall over and start the next big wildfire, a roof and walls when it storms, and other conveniences of modern life — not to mention that I enjoy the socializing — keep me coming back.

The first few visits I was able to observe the cause and effect between time at her house and my body’s reaction. (See “Bad Health Trumps Another Offer of Help.”) But now, after about one month of visits, I just feel like crap most of the time. It’s probably the mold. But there are other possible causes; who’s to say.

This is what it was like living in a house: I generally felt poorly most of the time, and I figured it was probably mold, but there was nothing I could do about it, or the efforts I made to fix the issue were not successful.

Choose one: Health or house. What a choice. Finding a mold-free house anywhere seems to be difficult. And then there are the other health challenges a house can present: new carpets or drapes outgassing formaldehyde and fire retardant chemicals; cabinets with particle board that outgasses for years; a newly oiled door hinge; vinyl or linoleum flooring; new construction; the list is endless. If you can smell it, you are breathing in chemicals. For “canaries in the mine” like me and many others, the result is any of many misery-inducing reactions.

Welcome to my world. And that of an increasing number of others. Which is why I think there is some social value to detailing my wretchedness in this blog. The lives of those of us with these odd chronic conditions will improve as other people realize how much they do not know. When others WANT to know, they are off to a good start.

Doctors and people in general have made a lot of progress understanding or at least not dismissing mystifying health problems. Fewer people decide it’s “all in your head” although believe me, they are still out there. When I first developed chemical sensitivities in 1996, I had heard only of extreme cases, like the “Bubble Boy” who lived in isolation in a plastic tent. When I started traveling for business in 1998, most hotel managers with whom I spoke had never heard of people who had to have their rooms cleaned without bleach or Pine Sol, or who needed to know all the renovations made to the premises in the past two years. By 2003, I had a much easier time with my pre-trip research because more hotels were aware of the issue. Fewer people thought I was crazy.

Nevertheless, we have a long way to go.

Fatigue has always been my reaction to mold, when I can identify the cause. Once I took a tour of the barn at a property whose owner was offering housing to a caretaker. Not long after leaving a stupor overcame me. Tired, I sat down, more fog descended, and that’s all she wrote for a couple hours of muddy slumber. By “muddy” I mean that for much of the “nap” I was aware I was sleeping and wanted to wake up, but I COULD not. It was as if my eyes had a pile of heavy wet but drying soil over them. I could not open them.

To get a sense of life in my world and my body, let’s start with a mold-induced permanent fatigue from living in a house a while. Then, add chemical exposures from outside venues, which can do anything from turning my brain to baby talk to giving me a headache. Then add mood swings which sometimes have me thinking thinking THINKING fast fast FAST so fast and creative that I can’t stop or sleep. Or mood swings that make me irritable and impatient. Or mood swings that forbid viewing the world in a positive and which encourage despair and lack of faith.

Then add the occasional inability to focus and to stay on one task for any period of time, the times I can not make any sense of a newspaper article or Internet listing, the times my calve muscles are cramping and bleeding and making walking difficult, the times I hurt all over because I ate something I shouldn’t (that most people can), the times I stay in pain for weeks because of some minor mishap, the times my stomach hurts or my intestines cramp, and the times I have some combination of the above.

That’s my particular version of “Feel Like Crap Syndrome (FLCS).” I didn’t have enough medical documentation to convince the disability judge that I am impaired. And the fact that sometimes I can work and sometimes I can’t complicates the case — you have to be unable to work all the time to get disability benefits.

Any single symptom or condition might not interfere with my ability to support myself or get through a day. Combined, my life is a far different story.

I have little patience for people who react (verbally or otherwise) with the attitude that “Well, I’m tired all the time, too, but I make it” or “Oh, ___(fill in the blank with one of my symptoms)___ is not all that bad, I live with that too.” Live in my body a couple years before you decide that I could do more and be more healthy if only I adopted your life philosophy. I’ll wait until I live in yours before I decide you’re not suffering enough to merit sympathy, help, family support, work and survival.

Better yet, let’s not judge each other at all. Let’s listen, seek to understand before seeking to be understood (as the famous consultant Steven Covey said) and learn from each other.

At first, this blog focused on the challenges of living in my car and the unique aspects involved when that car is parked 20 miles from the Mexican border. As my health sunk into a downswing, I’ve focused more on helping readers understand what it is like to live with some of the many chronic conditions that modern medicine has little success understanding or treating.

So if you’re weary of reading about my health issues, read some of the May and June posts about my adventures as a camper on the Arizona-Mexico border. If you are interested in homelessness and health, then I encourage you to keep up with current blog posts while also backtracking and filling in the gaps.

I’m off to warm up dinner leftovers at K’s house. A full stomach trumps avoiding mold, when the alternative choices are unavailable (i.e. I currently have no propane) or not as easy (i.e. even when I have propane to cook at camp).

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  1. Thanks for sharing your thoughts about chemical sensitivities (brain fog),.

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