Friday, April 30, 2010

Decisions: A Complex Matter

I am scared, and I am trying not to be. It's so easy to think of ways to battle fear and anxiety when you're not experiencing them, and so hard to actually put them into practice in the moment. Isn't that the way it always goes?

I'm debating between writing about this and not writing about this, and can't decide. There is a thin line between not wanting to think about something, and needing to think about it (and write or talk about it) enough so you can vent the excess nervous energy and obsessive mind power it has over you and get to sleep at night, or move on with your day.

It all comes down to decisions, I guess. Decisions! What a topic! We make so many different decisions, every single day, about so many different things. Some of us spend more time and energy on these decisions than others. Some agonize over decisions, while some people don't even seem to think about them. The decision making process is a very personal thing.

I am one of the people that likes to make decisions, about anything, no matter how small, very carefully. When you are as sensitive as I am to so many different things, you want to be careful about what kind of situations you put yourself in.

So, when I make decision, I weight the potential benefits versus costs. Will there be any potential harm coming to me from this decision? If so, how much? If so, is it balanced out by the potential benefit? Will this decision serve a purpose for me, and is it safe thing for me to, given all of my many physical, sensory and emotional needs?

Once I make the decision, I can move ahead feeling secure that I made a good decision. And it usually does work out that way, too. I've gotten pretty good at this whole calculating thing. The times that it doesn't, I can usually accept whatever the damages were by justifying it in some way.

But there are some occasions, of course, when there are unforeseen factors that you couldn't have factored in; or, you knew of the factors and the risk, but simply couldn't have predicted how much effect they would have on you. I guess that's why they call it a "risk."

But, for God's sake, walking out your front door and taking a walk should not be one of them.


I have been having problems with the air quality on occasion for the past two or thee weeks. Not because of humidity, which is my usual problem; there have been a few days like that, but not too many. The first time was roughly about two weeks ago, right before my former high school guidance counselor was going to come over. I open the door and there is this incredibly strong, sharp, pungent odor that immediately starts burning my eyes and nose and making me feel like I'm going to faint. I close the door *fast.*

Now, in credit to my reduced anxiety levels and increased coping abilities, I do not panic about it like I did in New York. I once forced myself to walk to the store to buy crackers in conditions like that in New York, and believe me, did I live to regret it. Full on meltdown over how bad that made me feel when I got back. No, thankfully from that experience in New York, I realized, there was no negotiating, no room for experimenting, that door needed to be closed fast, and I needed to forget about it.

Which I did, actually, because there was plenty to do in the house, unlike any other place I've lived, and I didn't have to panic about not being able to go outside.

I waited a few days before I tried it again, and I was okay. In fact, a week later, on the following Wednesday, I took the longest walk I'd taken yet, to the Town Landing Beach, and enjoyed it very much. I hoped to do it again soon.

But the following Monday, four days ago, the smell was back again, and this time I didn't even have to go outside to know it. It filled the whole house. Why, I have no idea, but that was a very hard day to get through. The smell inside abated by Tuesday, but I didn't dare check outside.

Wednesday, it rained, so I decided I would definitely go for a walk on Thursday (today). After four days of being in the house without any exercise, I was feeling extremely restless. Today was a beautiful day with no rain, and so around sunset, I went for a walk. I did not do it first without contemplating risk versus benefit. I reasoned that whatever pesticides (the first time this happened, there was a "keep off the lawn" sign on someone else's lawn that I saw days after, so I am pretty sure that must have been the reason) would probably be gone by now for the most part; it had been several days; and the rain would have washed some of them away.

Also, when I went for a walk days after the first application, I was bothered a little by a remaining smell close by the house,
but when I got out of the neighborhood, I was fine. So it was worth it. I felt a little out of it when I got back, but not too bad.

This time, however, the same rules did not apply. I went outside, and I could smell it a little bit but I figured okay, it's like last time, I'll walk towards Town Landing and it will be fine. Except when I got closer to the road that took you to Town Landing, the smell got worse - to dangerous levels. There was no way I was putting myself into that kind of situation, so I turned around. Tried to walk to the other end of our street instead. But that got worse about halfway down the street, too, so, not wanting to give up on my long awaited walk completely, I made a circuit from the halfway point of our street to the halfway point of the adjacent street a few times to get my heart beat up a little, until I could stand the smell no longer and went back inside.

I sat on chair in the living room, feeling wasted, flipping through the TV channels to try to distract me a little. I was sure I'd be fine after I sat for a few minutes, like last time. There wasn't much on, and I had people to call, so after 15 or 20 minutes, I picked myself up to go upstairs and continue my night.

Except. My body wouldn't go up the stairs. My chest felt like it was giving out, for lack of a better phrase. I couldn't do it. I collapsed in a small heap at the bottom of the stairs and tried to give myself a pep talk. "You're fine, you're just having a momentary reaction, you *can* go up these stairs." It took a few tries, and more effort than it should have, but I did get up the stairs. And my ability to do so did get better as the night went on. Still, though. It's the breathing thing again. The chest tightness, shortness of breath, can't take a deep breath without it hurting quite a bit, feeling like you're not getting enough oxygen, breathing thing, that scares me more than anything else.

I'm calm while writing this more or less, but I had to work very hard to remain so. I seem to have two different responses to chemical reactions. One is the eyes/nose/body stinging, brain fog, temporary loss of all function - not good, but it always goes away as soon as I get out of the situation or soon after, or hangs around for a few hours in a very reduced form before going away.

While that is worse in the short term, it is better in the long term. Because the other symptom, which I described above, is much worse. And once it happens, it usually sticks around. I hope to hell this time it won't. The average time it stays is around two weeks, but I think that it's probably more that I get used to it as "normal" by then than it actually goes away.

It doesn't happen that often, but it hits hard when it does.


The last time it happened was when I was in Eugene (Oregon). In one of the few times in my entire life that I have acted on impulse, I decided to forget all my rules about basically going nowhere but natural food stores (since those are the only places that I sometimes seem to be able to get away with, the one in Albany, New York a gross exception), and go into a lox store. I wouldn't have done this, except for two reasons: a) I had spent the afternoon going into natural food stores in Eugene, and had had no disasters yet, therefore giving myself an artificial sense of confidence, and b) it was a LOX STORE. IN *OREGON.* I repeat, it was a lox store in Oregon. I didn't even know they knew what lox was in Oregon. Chalk it up to homesickness. Lox equaled home to me. I decided to go into the store, and look at the lox. If you don't know what lox is, you're probably not from the East coast and should google it.

I wish I could explain to you adequately what happens when I do this, in most places. My brain gets so fuzzy, there's like a sense of pressure on my brain and body, everything tingles and seems far away, and I literally, in most cases, can hardly speak. It's like the act of speaking takes up too much brainpower, which has already been sapped up by the chemical reaction, and it makes my brain feel like I am going to explode to speak. So I pointed at what I wanted instead.

I wanted to stay long enough to sample the lox. By the way, it was crappy lox. I guess Oregon can't actually do lox after all. Well, it wasn't inedible, but it certainly wasn't worth coming in for. I stayed under five minutes. And made a beeline for the door. When the stinging symptoms subsided and my head cleared, I thought I was in the clear. As those symptoms subsided, though, I realized I was having trouble breathing. Oh, shit, I thought. Not this again.

It lasted the next two weeks at least. I was miserable beyond belief. Here I was, at this hippie commune in the middle of nowhere, completely on my own, no transportation except when I could hire someone, no sympathetic faces nearby.... and I felt like I couldn't breathe. I just have this vivid memory of being on the phone with my mom telling her that I felt like I couldn't breathe, but of course there was nothing she could do. Walking became harder; I didn't have nearly as much stamina. Even talking felt like it took way too much breath, more breath than I had, for the first few days. Two weeks later, when I saw the guy who drove me again, I had regained functionality but still felt the tightness, the je ne sais quoi that had not been there before. In the last year, my stamina for walking and hiking has gone way down, and as far I'm concerned I can attribute it to the chemical exposures I've had; I never felt like this before.

People occasionally ask me if I think I made the right choices in going to all of the places I did. I say yes, without a doubt.
But in my entire two years or so of traveling, the only thing I really had any regrets about was going into that damn lox place.

Trust a food related item to be my downfall.

Anyway, this is getting long, so I need to end this and make my point, and then go to bed.


The point being, of course, that a) I like a sense of order, a sense of control over my emotional and physical well being when possible, b) I try very hard to order my life to achieve these, and c) when I can't, it scares the hell out of me.

Point also being is that I've spent all week dreaming of what it would be like to go into certain places and not experience a reaction, and was very, very close to asking someone to take me to True North to see if I could tolerate it there and ask if I could do presentations on autism. I was very excited about it. Now this happens and I'm worried if I'll feel well enough to do it, and it just makes me rethink things. I have to be calm and feeling stable mentally and physically to try something new, or else the residual anxiety will mix with the new anxiety and create a total overwhelm. I hope I still can but who knows.

Thirdly, on a more positive note, I am reminding myself that at least this time I am in a much more positive and stable environment, and even if I don't feel well at least, thank goodness, I have things and people to do to distract me from that fact so I don;t have to sit around and think about how I can't breathe. So maybe that will make the difference.

I will avoid outside the next few days, then go and try again, and all I can say is, I hope to hell this is not a problem all summer, and that I feel better tomorrow.

I just don't like getting blindsided this way - or so it feels to me. I don't like having small, everyday things that most people take for granted feel like Russian Roulette decisions to me.

So those are my thoughts about decisions, and the havoc it can wreak when you make the wrong ones. But also how you can't always know and have to do the best you can.

Does anyone else give as much thought to decisions as I do? Do you have any particular decision making process?


  1. Hi Kate,

    Gah, pesticides are one of the worst things for me, too.

    If it were me, I'd not walk thru a dangerous area with a mask on; your skin will still absorb stuff, it will get on your clothes, in your hair, etc.

    While I know it's not ideal at all to have to depend on someone else, do you know someone who could pick you up in a car so that you'd be enclosed going thru the unsafe area and could then go somewhere safe to walk?

    Oh,you don't mention this, so just in case: when you get home after getting hit with something, it's best to shower thoroughly, wash hair, and if you tolerate them, take vitamin c, charcoal, chem-defense, milk thistle, etc., to help detox safely. The less time any residue is on your body, the better.

    I'd also try to wash what you were wearing (separately from anything else in case it's contaminated). If you can't wash it immediately, try to package it up in zipper bags or soemthing so it can't outgas into your air space.


  2. Have you tried I Can Breathe! air filter masks? My counselor says they work for her. I've been debating on whether or not to shell out the money - everyone and their mother smokes at the bus stops and, with my asthma, it's become problematic. I've even had people blow their smoke into my face as I try to get onto the bus (last, as per usual, because it's either get on last or have everyone else shove me out of their way so they can get on first.) There's the link.

    I clearly understand about having to make very careful decisions - it's usually why I have such a hard time making decisions in the first place - all the unknowns lol

    - Serenity

  3. I do usually put a lot of thought into my decisions, but aside from my kids, I don't have to deal with the sensitivities that make things so difficult for you. I hope you're able to figure something out soon so that you can enjoy your walks again!