Multiple Chemical Sensitivity, the Onset

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I was 24 and had recently returned to my parent’s home in suburban Philadelphia, after a seven week cross-country road-trip that extended into a four month stint of living in a filthy, cheap house with two random dudes in San Luis Obispo, California. I needed to see if California was where I belonged. It wasn’t, at least not then. Verdict’s still out about now.

(Photo above was taken on my road trip.)

I’d returned to Pennsylvania to start a new job as a social worker with a Philadelphia area home hospice program. After a couple months living with my parents, I found a quaint garage apartment in Narberth, the only bohemian enclave on the Main Line.

The apartment was petite and sunny, with newly refinished floors, fresh paint, and new carpeting in a couple rooms. I couldn’t wait to move in and nest, which has been my favorite to-do since I was old enough to walk. In the weeks before moving in, I used my anticipatory nesting energy to repaint an old china cabinet of my mom’s, with a beautiful taupe oil paint.

On moving day, after a motley crew of friends helped me move my stuff into the apartment, my mom stayed, cleaning what had already been cleaned like only a mom would do. Excitedly we unpacked boxes and talked about furniture arrangements. By afternoon, I developed a terrible headache and took a nap. I was used to getting headaches from ignoring low blood sugar, but they usually faded if I napped or ate. When I woke up, my headache was worse. Eventually I sent my mom home for the evening so I could rest.

Over the next week, while visiting hospice patients and puttering around my new apartment, I felt lousy. Beyond the headaches, my head felt foggy, dizzy, and dislocated. I remember putting on my distance glasses and they made my vision blurrier and intensified the dizziness. I was getting terrible motion sickness in my car. While visiting a bed-bound hospice patient, her son applied fragrant lotion to her arm, and I had to flee the room because I nearly fainted from the smell. My coworkers kept telling me I didn’t look well.

I started to notice the polyurethane, paint, and carpet smell in my apartment in a way that I hadn’t initially. My sister-in-law came for a visit and felt nauseous soon after arriving. We wondered if perhaps the apartment just needed to be ventilated after the recent updates. Though it was only April, I tried living with all the windows open 24/7 and my mom brought fans to put in the windows.

After a couple more chilly weeks, I was feeling worse. After a full month, the place already completely decked out because I can’t resist the urge to decorate, we decided that it must be the apartment that was making me feel sick, and that I was too unwell to stay. Stubbornly, I gave it one more month of airing out while I stayed at my parents, but the smells lingered and I’d feel worse whenever I visited. Heartbroken, I eventually forfeited that adorable apartment with the little porch off the bedroom. A part of me still pines for that space to this day.

Once all my things were moved out, and I was back at my parent’s house, I noticed that everything, especially textiles, now smelled like the apartment, like polyurethane. Logically, I washed all of my clothes in the mainstream detergent we’d always used. Now, nearly twenty years later, I still remember the moment I dumped all those cleaned clothes into a pile on the floor, and nearly passed out from the smell of detergent.

The bedroom where I dumped those clothes was the same room from middle school where I’d slathered my body with Crabtree & Evelyn lotions and sprayed Anais Anais perfume so enthusiastically that my dad asked my mom, “Can you talk to her about the perfume?” It was the same room in high school where I’d packed for a three week cultural study tour of Egypt where I encountered a million new smells without incident. And it was the same room that we redecorated after college when I got a job as an activities director for elders with dementia and decided to live at home for a year to save money. We’d wallpapered and installed teal wall-to-wall carpeting. I’d even meticulously painted the trim woodwork in multiple colors with oil paint.

During those first weeks back at my parent’s house after moving out of the Narberth apartment, I felt bowled over by all sorts of smells, from the paper used for a box of new checks, to the smell of the ink when opening a phone book or newspaper, to the exhaust from diesel trucks which made my chest burn fiercely.

Initially, I don’t remember feeling especially concerned about what was happening to my body, and assumed I would start to feel better soon. But I didn’t. So I started going to doctors to see if they could figure it out. They couldn’t. Eventually my mom and I found our way to an environmental medicine doctor, which I’d never heard of. It was at that appointment that I was first diagnosed with Multiple Chemical Sensitivity (MCS), which I’d also never heard of.

When Dr. Buttram discovered that I’d been on antibiotics non-stop, three times a day, from the age of two months old straight through to four years old, because of unremitting UTI’s, he explained how much long-term damage these drugs can do to an infant and toddler’s microbiome, nervous system, and immune system, resulting in collapsed health and things like MCS later in life. I was also a sugar junkie, ministering to dying patients and their families on a daily basis, and still deeply grieving the end of a romantic relationship, all of which the good doctor thought might be putting extra stress on my immune system. There was also a question of whether invisible mold might have been an issue in the garage apartment.

Over the next two years, I continued to struggle with the MCS, fatigue, dizziness, foggy brain, and chest burning. I’d gone from being a vibrant college field hockey player who adventured cross country and could go anywhere or use any product, to a sickly and depressed human who had to be careful about everything.

After a while, I tried moving out once more to another darling apartment, but couldn’t tolerate what had been used to clean the rugs, and had to move everything back home again. My heart ached, and my journal pages were filled with darkness.

But with the help of the environmental medicine doctor and a handful of other alternative practitioners, the support of friends and family, a radical diet change, and a ton of supplements, I never returned to baseline but two years later, I felt brave and adequate enough to try moving to Boston to go to grad school.

The MCS that began twenty years ago mysteriously seemed to be the domino that kicked off two decades of fluctuating poor health, with a steady downturn over the last five years. Today, at 43, despite being the healthiest eater you’ll ever meet (I haven’t had cookies, cake, candy, ice cream or other sweets in 11 years!), drinking nothing but water, walking daily, meditating regularly, twice weekly therapy, and trying nearly every mainstream and alternative modality that exists, I still wrestle with eight chronic conditions, plus MCS.

I live with a form of vulvodynia that causes daily vaginal pain; interstitial cystitis which causes daily bladder discomfort and flares of incredible urinary frequency; a herniated disc that flares periodically; eustachian tube dysfunction which causes daily dizziness, severe ear pressure, and motion sickness; acid reflux and lung inflammation which causes daily burning in my chest; chronic fatigue such that I have to regularly resist the urge to take a nap soon after waking up in the morning; and food sensitivities to the point where I pretty much only eat chicken, fish, vegetables, and fruit. And the cherries on top of this chronic illness sundae? Clinical depression and anxiety.

The severity of my MCS has waxed and waned over the years, but it’s never been as bad as when it first began. Until a year and a half ago. Coinciding with a severe depressive episode, the MCS slowly began to get far worse than when I was first diagnosed. Today my sensitivity, and more specifically my already acute sense of smell (called hyperosmia) has gone neurologically off-the-charts and my life has become radically restricted.

I will save that story for next time, plus I’ll share what I’m doing and exploring these days to give myself hope that I still have a chance at healing some of this madness. Here’s a teaser: I believe my health issues stem, in part, from childhood medical trauma.

Heal thy trauma, heal thy health? Time will tell.

3 thoughts on “Multiple Chemical Sensitivity, the Onset

  1. God how I love you K… You embody courage and strength that will forever humble me.
    You are indeed my hero in all ways.
    !kung
    k2

    Like

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