4 Ways My Body Reacts With Multiple Chemical Sensitivity

I belong to several online support groups for people like me who have multiple chemical sensitivity (MCS). We share common stories of people thinking we have “allergies” and accusing us of not being ill. Well, allergies can be co-morbid with MCS, but they are not the same. So, in the hopes of educating others, I thought I would share some of my more annoying reactions. Certainly there are many more, but these are the ones that cause me the most angst and trouble. Also keep in mind each person with MCS is different. We have different reactions to the same chemicals, and the intensity of our reactions are different.

1. Brain fog. This is one of the more common reactions for people like me. It is difficult to describe what brain fog feels like, partially because I am currently a little foggy, and partially because like the mist it is named for, the feeling is nebulous and difficult to pin down. My late husband used to say that a difficult task was like “wading through hip-deep Jell-O” and I find that an accurate description. Just thinking requires more effort and is more difficult. It is hard to keep my eyes open, to focus, to be attentive. To me, brain fog feels very similar to when one has a cold and they feel kind of dopey.

2. Forgetfulness. I don’t think I need to describe what forgetfulness feels like, do I? I mean we all have moments where we don’t remember something. It is a normal part of being a human. However, for me the forgetfulness comes in much larger quantities, covering longer portions of time in my life. I have whole days that are gone, and in the last year, I “lost” almost the whole month of August and most of September after a long, intense exposure.

It is a terrifying feeling, not being able to recall something.

It is living with the perpetual feeling of something being on the “tip of my tongue.” It is most heartbreaking when one of my adult children will tell a story of something we did and say “Do you remember that?” and I have to be honest and say “no.” This symptom also rears its ugly head in me misplacing things and forgetting how to do simple tasks, such as turning the shower on from the tub setting. Or, I forget to turn the stove burner on. And I live in fear of forgetting to turn it off.

3. Losing words. As a writer, I find this on the most ironic. When reacting I can tell you to set the dish on the “big, brown, round, wooden thing in the dining room that we all sit around to eat.” But I can’t remember the word “table.” I can often tell you the opposite word — like in a conversation with my therapist last week when I was trying to talk about elective classes in college, but could only say “the ones that are opposite of a core class.” It happens a lot and it is incredibly frustrating. Because I have a large vocabulary, many people don’t realize I am struggling, as I often substitute a different word to get my point across, but in my mind and in my heart I know. I know.

4. Exhaustion. By exhaustion, I mean numbing, bone-weary, tired. Not the “I could use a bit more sleep” kind of tired. There are times when I can barely keep my eyes open or raise my arms up over my head. I wake up tired and spend most of my days wanting nothing but to go back to bed and curl up under the covers. I am pretty sure there will come a day when that will be my only choice, but for today I still fight to stay upright.

The other physical symptoms I experience are annoying, but not like the ones above. Feeling off-balanced, like almost dizzy but not quite, and loss of coordination are two that often go hand in hand. I find myself walking into walls or to the right of where I want to go and sometimes I will just kind of start to tip over and have to grab onto something to keep
from falling.

In the last year or so, I have also started noticing joint pain when exposed. My hips, back, knees, ankles shoulders and hands hurt the most often. At first I thought it was from being more active, because it seemed to always flare up after going out to the store, but then I noticed it was not always after a change in my physical exertion. I also have migraines, which are fairly well known and understood so I won’t go into too much detail, but they are annoying nonetheless.

Even reading what I have written here, these reactions don’t seem to be too bad. But keep in mind I experience them in varying intensities almost all day long, every day of my life.

Always being sick can really wear one down.

Being sick every day and not seeing any end in sight nor any way to get better is beyond tiring. It is debilitating.

Follow this journey on The Road to Natural

Lead photo source: Thinkstock Images

The Mighty is asking the following: Coin a term to describe a symptom, characteristic, aspect, etc., of your diagnosis. Then, explain what that experience feels like for you. Check out our Submit a Story page for more about our submission guidelines.

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