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Surviving voluntary chemical exposures

April 13th, 2008 · by Cyndi · 2 Comments

Multiple chemical sensitivity is a lovely disease. With a lot of other disabilities, the issue of access is simply that: getting in. With MCS, it’s all about survival.

Like anyone else who doesn’t remain homebound, I get whammed once in a while. Depending on what the chemical is, I’m usually okay after a few minutes or hours (with a few notable exceptions!). I may need to shower and change, or use oxygen, but I recover. More chronic exposures are the ones that get me, and I almost never have those anymore.

Last week, a friend of a friend passed away and we went to the funeral on Thursday. I couldn’t tell if there was anything bad at the mortuary but there were large numbers of people wearing fragrance (why?!). The ceiling was high and I wasn’t in terrible shape, though I got a headache.

The next day, Friday, we went to the widow’s house for shiva (visiting the mourners who are sitting at home for a week) and I was exposed to scented candles (unlit). It wasn’t terribly strong and I stayed away from them as best I could. That evening, I had dinner in someone else’s home where the condo itself is safe but the association sprays outside (nothing recent; I didn’t notice anything, but I get a bit worn down when I’m there).

Saturday was a party at a home that is mostly safe, but there are lots of little things here and there, and various scented people. Also a long drive to and from past cities and refineries (air on recirculate of course, but some gets in anyway).

By that evening, at a very safe meeting in a very safe building, I was toast. Burnt soggy toast.

Any one of those exposures would have been enough to get me for a few hours, some with headaches, but they would have cleared. Put them all together and I’m a dysfunctional mess.

I had a revelation that day, yesterday. The fuzzy head, the inability to feel properly inside my body, the feeling that someone else was talking for me, not being able to focus, going to a lecture and knowing there was no way I could take notes, and of course the constant background headache and body pain and just plain malaise…that’s how I felt all through grad school.

That’s why I couldn’t get work done. I wasn’t “sick” persay, most of the time, but I wasn’t there. It isn’t a lack of motivation or desire, but I couldn’t pull back and look at the big picture. I was stuck, moment by moment, in a body that didn’t function and a brain that was like mush.

Grad school was when I was diagnosed with MCS (the symptoms started earlier but mostly didn’t interfere with anything, except going places with cigarette smoke). But I always assumed most of my inability to do my work was emotional. But here I was yesterday with the same feelings, the same dysfunctions, all clearly caused by several mild to moderate exposures adding up into one big neurological tangle.

I’ve been having other symptoms as well. Migraines, focused joint pain in my left little finger and left ankle, and edema in my lower legs, something I used to have regularly but haven’t had for about 3 years.

I take care of myself these days. I do have exposures here and there, but I spread them out and don’t take foolish chances. So, for example, I’ll go shop at Costco, but I won’t go down the laundry aisle. Or I’ll go to a lecture, but I won’t go to an outdoor rally. It is possible I was exposed to something I don’t know about (like a pesticide, though I haven’t been getting any of my other usual pesticide symptoms) or this could just be about repeated exposure.

I’ve been lax since Miriam was born about taking my supplements every day and other things that used to be necessary to keep me going. And I’m not always good about doing all the other things I need to do.

Survival Techniques:

* When returning home from an event with an exposure, immediately put clothes into the laundry (don’t sit on anything).
* If there is any chance of lingering chemicals, shower and wash hair.
* For really bad exposures, take charcoal (drink extra water and don’t eat or take anything else for 1-2 hours).
* Take vitamin C. Lots of it. Repeatedly.
* Take other supplements. Basic multi, B’s, other antioxidants, etc.
* Eat fat. Good organic fat.
* Drink lots of water.
* Eat protein and fiber and no junk.

I woke up with a nasty migraine this morning and then realized my hair smelled like perfume. I hadn’t smelled anything on me before (and I had been changing my clothes and rinsing my face, arms, and head) but here I was violating my own rule. So I showered and washed my hair and had Michael change my pillowcase. The headache went down into the background.

I have more commitments that will involve exposures but I will be cautious. Tonight we went for Kaddish (the prayer for the dead, which requires a minyan (10 Jewish adults)). The scented candles were lit this time but the house was full and I knew there was more than a minyan there, so I stayed outside while Michael quickly explained things and we left. We will return during the week when fewer people will be there and the candles will be unlit.

I lived like this for years. Constant symptoms, always in crisis, small exposures pushing me over the edge so I felt like nothing I did was safe. When you have chronic exposures, it becomes impossible to figure out symptoms and causes from timing or anything else. They meld together. So sometimes you think the entire world is dangerous or that it is really all you and not anything external.

When you take care of yourself, these chronic symptoms go away. I’m not cured, obviously, but I do pretty well when I am careful. So many people new to MCS (and many who are old-timers) haven’t learned this yet. Sometimes it’s because they live someplace where it is impossible to get away from exposures, or they must work and it’s not safe there, or they know the lesson but had too many chemical injuries and now have severe damage.

It’s hard to pull yourself out of the world enough to make your life safe for you. It’s easier to make excuses. I don’t get worse when I use my shampoo, so there must be nothing bad there. Except that, with a chronic exposure, there is no way to know.

Leaving grad school and giving up my career and dreams was the hardest thing I ever did. I had no choice at the time: I was simply unable to do the work. Not working now, and giving up on my other possible careers, is equally hard. Missing out on social opportunities and parenting networks, losing religious community (I can’t go into most of the synagogues around here due to pesticides and perfume), limiting my outings. All very difficult. But doing it has made it possible for me to have a life. A child. A spouse. A brain.

Categories: Family Life · Health · Judaism · Religion & Holidays
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2 responses so far ↓

  • 1 Rebecca Swan // Apr 14, 2008 at 3:33 pm

    Wow, that is a great article. Thank you for taking the time and the focus to write this.

  • 2 janet // Apr 15, 2008 at 6:59 am

    “constant symptoms” – I can sure relate. Though mine are not usually severe, there’s still rarely a day or week where something isn’t bothering me. But (as Beckett would say) I go on.

    Love the ending of your story.

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