The Top Ten Questions I Am Asked About MCS

1. What kind of reactions do you have?
IN MY PARTICULAR CASE, there seems to be four different types of reactions that I get, and I never know which one will occur. I will either begin crying uncontrollably (possibly becoming violent), I will become extremely weak and unable to move on my own (this includes talking, walking and breathing), have muscle spams (it looks like I am having a seizure, but I am conscious the whole time), or I begin to hyperventilate. There does not seem to be any correlations between the triggering substances and the reactions. I can also have any combination of the above reactions. These reactons always pass, although I have passed out a few times from being too weak to breathe. All that can be done for me is to get me away from the offending chemical and into fresh air and give me a sodium bicarbonate/potassium bicarbonate pill. I have incorporated it into my Health Care Power of Attorney that I will refuse ALL medical interventions UNLESS my express verbal consent is given--in other words, if I don't say you can touch me, you have to leave me alone, despite your desire to help. I have a nose like a bloodhound and I can usually tell what the offending substance is. Every person is different and had a different set of symptoms (which may vary), but they usually react to the same chemicals consistently.

2. What chemicals and foods make you sick?
In my case, MCS is an off-shoot of basilar artery migraines. However, the MCS aspect of my illness is something that I have to deal with every single day, 24 hours a day, 7 days a week. For me, petroleum-based chemcials, fermented foods, and sympathomimetic drugs bother me greatly. Many everyday items have petroleum bases, such as furniture polish, cigarette smoke, hair spray, gas stoves and glues. It only takes a few parts per billion to make me sick, an amount that goes virtually unnoticed by the majority of the population. The olfactory nerve (the nerve that goes straight to your brain without passing through the blood-brain barrier) is a powerful thing and it can control the limbic system of the brain--this is the part of the brain that controls many of the basic bodily functions and emotions.

3. Can you tell when you are going to have an attack?
Yes, I can. I get a warning that can last from a few seconds to a few minutes, which will usually allow me enough time to to al least sit down or pull off the road. I usually feel very light-headed, weak, and am unable to make sound decisions. Normally, these attacks last 20-30 minutes, afterwhich I will have a migraine and be very grouchy, but will be basically okay.

4. Is there anything you can do to feel better?
There are a few things that I can do to help relieve the discomfort during and after a reaction: breathing exercises, lying down in a dark and quiet place and taking analgesics for pain are the most useful weapons in my arsenal. Alka-Seltzer Gold or a sodium bicarbonate/potassion bicarbonate helps to counteract the brain acidity during the reaction. Of course, the best preventive is to avoid the triggering chemicals, foods, and drugs in the first place. I rarely leave home so that I can avoid the massive proliferation of petrochemicals that are out in the world.

5. How do you drive?
I keep all the windows up and the air on "recirculate." I don't get near brand new cars, as they are full of formaldehyde. I have a wonderful Aireox air filter (available from NEEDS) and I won't go anywhere without having it in the car with me. If I know that a particular area will be paved, I find an alternate route. I limit my driving to the bare minimum.

6. Isn't there a mask you can use?
I have a coconut charcoal mask that will help for a short period of time, but my lungs are not strong enough to breathe through it for very long. Chemically-laden air can still leak around the sides, so even a mask isn't fool-proof. I do not know of a non-toxic mask that will help that doesn't require a lot of lung strength. Life is tough, so I stay home most of the time.

7. How do you do your shopping?
I shop as little as possible. New clothes and malls are not very high on my priority list anymore. I avoid the areas of the stores where I know there will be strong odors, mainly the detergent aisles and the photoprocessing areas. If I need something from that aisle, I will wear my mask (yes, vanity gets dumped quickly if you want to keep breathing!) or ask a store clerk for help. I plan my shopping and dash in and out as quickly as I can.

8. Will you do architecture out of your home?
No. I have allowed my license to lapse, as I don't feel confident making the necessary decisions an architect must make with the cognitive problems that I have now. I have trouble with logic, memory, integration of information and visual recognition, all of which are important if I am going to practice my profession. Also, I have no idea from one minute to the next how I will be feeling, and cannot be relied upon to meet any deadlines. I have absolutely no idea what I will be doing in the future, but it will probably involve writing (like web sites!).

9. Will you get better?
I hope so. There are no guarantees with this illness. So far, I have not gotten any less reactive, I'm merely better at avoiding triggering substances.

10. Are there other people with this problem?
Yes, probably many more than you think. Approximately 15% of the population has this syndrome to some degree. Obviously, not all of them are debilitated by it. If you start asking specific questions of your friends and family, you might be surprised at what you discover about their own sensitivities to chemicals. You have to ASK to get some answers--most people don't volunteer this kind of information. For some reason, women comprise about 70% of all MCS sufferers (statistics vary, but that one will do for our purposes) and the syndrome tends to run in families.

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