MCS is one of a set of illnesses that are known as “invisible illnesses” because those of us who have them don’t look like we’re sick. They are hard to diagnose and difficult to live with day in and day out in part because there is this lingering feeling that we might just be faking it, since we look normal. If you can’t see what’s wrong with us, then maybe nothing is, right? Unfortunately, the things that make people with MCS ill are also invisible and sometimes hard to identify. We are called “the Canaries in the Coal Mine” because like those birds who warn miners of gas leaks and oxygen deficiencies, we warn of the toxins in our environment. At least for most of us with MCS we only get sick, the real canaries die.

As part of my ongoing effort to help myself, and in turn help others, I spent one day keep track of what I did, how I felt and what I experienced – health wise. It was amazingly helpful to see the reality of my life in black and white. I am so very good a pushing what I go through under an imaginary rug and trying to convince myself that half the things I think I’m feeling are not real, that whole “If you can’t see it, I can’t really be sick” routine. Honestly look at what my days look and feel like was a powerful reminder of both how far I have come since I was first diagnoses (yes, there has been some improvement I am happy to say) and how much MCS is still dictates the boundaries of my life.
I was also thinking that it might be helpful for other people to see what living with MCS is like because just saying “I’m allergic to half the planet” (my usual answer to strangers) doesn’t really explain what we Canaries go through on a daily basis. Of course each one of us is different. What we are allergic and /or sensitive to is different, what we need to do to cope with our triggers is different and how we recover and care for ourselves is different. This is what things look like for me.

A “normal” day with MCS
My day usually starts around 10:30 am. I know, neat that I get to sleep in, right? The problem is, too often I get a terrible night sleep. Something is off in my sleep cycle which means I can’t fall asleep until sometime after 2 am and depending on how my day has gone, I may or may not be able to sleep once I get to sleep. It will also depend on my sinuses, which right now are a mess with the most current round of a sinus infection (my first official one of the year, my eighth or so since MCS walked into my life). By this point I’ve had one medication (at 7 am) and need to take another one before breakfast.
On the morning I started writing this, because of how badly I had slept, I woke up feeling rather pummeled and wanting nothing more than to crawl back under the covers. I did mange to get up, stretch grab a scone for breakfast and head out for a walk.
The day was beautiful, clear skies, and spring-like temperatures as opposed to the heat we have had the last couple of day. I had a mask on my face (I always wear a mask whenever I leave the house), music in my ears and pain in my chest. Ah well. With my asthma, particularly of late, I have what I call this “warm up” period for my lungs. It feels like I have to push through something very thick and heavy to get each breath, except I am clearly breathing, which is bloody confusing. It takes a couple of blocks for my lungs to get into the swing of working without trying to kill me. On this morning they never quite warmed up. I finally decided that I needed to be done with my walk and made my swing towards our local Whole Foods grocery store. Going to the store gives my lungs a chance to rest since wandering around a store takes much less energy than even a mild walk, and I can pick up lunch or whatever else I need for the day.
Normally after my stop at the store my lungs are pretty happy. Even if they were still achy when I got to the store, the rest helps them mellow enough to make the walk home easily. Not this day. The walk home was more of the same, thick lungs and slow going. I did make it home, tired but invigorated even with the ache in my chest. It’s this feeling after the walk that makes it worth the effort, and part of why I keep making myself get out of the house and walk.
Next up was more med (well one med and a bunch of supplements), resting and catching up with the rest of the world – hello internet! I got to chat with some friends on line, read some news, and help my youngest son with a last minute clothing crisis before his presentation at school.
Oh, right, school. So the youngest son does these presentations four times a year, a requirement of his particular high school. I can’t attend any of them. All of them are held on campus in a large room with his whole class, his teachers, and a whole lot of parents. This means at minimum 20- 30 chemical fragrances on the people in addition to the cleaning, office and school supplies for the school. Even if no one is wearing cologne or perfume, I would still be in trouble. I did try going to the school the first day my son started freshman year. I managed twenty minutes with two doses of antihistamine and I was sick for days afterward. The administrators and teachers have been wonderful in helping us find work-a-rounds ever since. Now the school sends the yearly registration packet home with my son for me to fill out because they know about my illness. I fill everything in and my son returns things to the school. His teachers and I communicate a great deal through email and phone, and my husband covers all the in person meetings. What this does not change however, is the fact that I have never seen, and am unlikely to ever see, my son’s presentations. I will also not be able to attend my youngest son’s graduation. Having had to miss my eldest son’s graduation from High School two years ago, I already know how emotionally hard that will be for me. My kids are amazing and having been taking all of this in stride. I just have to hope that they continue to be strong. Thankfully they have lots of help and lots of extended family to fill in the gaps.
On this particular day, instead of going to the presentation, I dealt with a getting a chest x-ray done at the request of my allergist. Since a. it was a lovely day, b. the place was not far from my house, and c. there was a safe route I could take off the main drag, I walked. A second walk in one day should make my cluster of doctors happy, and it certainly felt lovely to be out moving my body and feeling the sun on my face again. My lungs were better than in the morning, so that was nice.
At the imaging center there were no obvious scents. This is one nice thing that has been happening with a lot of doctor’s offices of late, there are lots of signs asking people to refrain from wearing perfumes and scented products. It does help. Of course with MCS this only addresses the tip of the iceberg. By the time I was called to get my x-ray the tiny room was filled, which meant there were seven people with me on the patient’s side of the room and two people on the staff side. I had a headache and was coughing after only fifteen minutes in the room.
The x-ray itself was a piece of cake, though I was glad I got to keep my mask on, as the chin plate had been wiped down with alcohol, which while not one of my triggers generally, is a strong enough chemical that on top of the other things my body was already dealing with, that it was not a great thing to add to the mix.
Leaving the x-ray room I had to walk past a cloud of perfume. I have no idea who it was attached to, only that it kicked my headache and cough up another level.
Outside the building, just past the state mandated “no smoking” zone, was a guy smoking. He was of course right in the path of where I had to walk to get to my safe route home.
The walk home was uneventful in the sense that nothing else happened, but my chest ached the whole way and my head refused to stop hurting. I also needed a nap so bad I could taste it. Now imagine if I hadn’t been wearing my mask this whole time…

One of the things I always find odd is how the symptoms of an MCS exposure event / attack / episode – there isn’t any ideal language around this – creeps up on me. I can feel the cough and the headache but think that’s all there will be. I have lost track of the number of times I have assumed that I had “missed” a full on attack, only to get smacked upside the head by the rest of the symptoms half an hour later. And sure enough this day was like the rest in this way. More symptoms kicked in a short time later. Along with the need for a nap, which always shows up as a bone deep exhaustion, comes the “brain fog” – this blurring of cognition and mental capacity. I start to lose access to words. Its not that I cant speak, I can, it just becomes slower, the connections are harder to make – like when you have a thought on the tip of your tongue but you cant quite get it to form and come out through your mouth. I know I have a thought, the answer to a question, a person’s name or whatever, but it takes so much longer to make all the bits work together to relay the information. It gets very frustrating. Of course since I’m also so damn tired, it becomes nearly impossible to care because all I want to do is sleep until I don’t hurt and can think again.
The hurting comes from the headache and the ache in my lungs, but also from the pain in my joints that now get into the act. It seems almost as though the toxins I have been exposed to are pooling in my knees and my elbows, and any other point of connection between bones and ligaments in my body. My joints feel tender and bloated and just plain awful. There’s also this taste on the tip of my tongue or at the back of my throat – a metallic-y, chemically, tang that tastes like nothing I’ve had to eat or drink recently. At this point, if I haven’t figured it out already, there is no way to miss that I have been exposed to enough chemicals that I am in full on exposure mode. At this point I know I need to take medication (antihistamine to start – the epi pen is on stand by if that and the rest are not enough), drink a whole lot of water, down some activated charcoal and 1000 mgs of vitamin C, and stop fighting the need for sleep.
Post exposure naps can last between two and three hours. After the nap I almost always need to eat and have both more water and more charcoal and vitamin C. If the exposure was mild, like with the imaging center, then that should be all I have to deal with for the day.
The nap, or the meds, or the exposure itself adds something to the way my sleep cycle is out of whack, so it’s a good bet I’ll be up until way past 2 am with my brain making up for all the time it lost time during the day. If the exposure was worse than that, then I will be on the couch for the next several days recovering. Recovery days are a lot like most other people’s days at the end of a case of the flue, one the first day you feel like a wrung out dish rag that can only hit buttons on the remote control, eat chicken soup, drink fluids, take meds and nap. By day two you feel “almost” well enough to get into trouble if you are not careful, that whole cabin fever feeling where you are tired of being sick, but not quite well enough to do anything. I say two days, because of late that’s been the most common length of my recovery time, but it has been everything from two days to four weeks depending on the degree of the exposure.
Granted I don’t have to get an x-ray done every day. But I do have groceries to get, laundry to do, and other peoples weed whacking to avoid. I have learned the hard way that I cannot ride mass transit, fill my own car with gas, go to the movies or see a play, go to a museum, take my kids to buy clothes or shoes, go out to dinner with my husband, or attend a public ritual. In short, I live life inside a bubble, relatively safe because I don’t do the things that I used to be able to do, things that I enjoyed and that we all, myself included take for granted on a daily basis. I have had to transform how I live my life in order to live my life. Now a date with my husband is a walk in the woods or a drive in my car with its air purifier, shopping for clothes is all done over the internet, and my housemates gas my car for me. I am happy to say I have finally seen a play again for the first time in four years because I have wonderful friends at a local theater company and they got me into a dress-tech rehearsal. It was Amazing!
Not all of the changes in my life are terrible, in fact some of the changes in my life are lovely. I have an amazing garden, do lots of on line shopping, and my friends tend to come to my house when I need or want company. What is difficult in all of this is having the choice of what to do or not do taken away from me. It would feel so different to say “I choose not to go to the movies” or “I choose not to go to the mall”, but when that choice was taken away from me with this illness, it shifted a million things in my life, my head and my heart.
Never once did I think while growing up that I would have this illness or be struggling with the fact that I am disabled, but then nothing about my adult life is exactly what I expected. I never saw the Pagan thing coming, or the work as a ritualist or doll maker, and I always assumed I would give birth to my children, not acquire them with my marriage. There are plenty of bad days when I fall into despair and grieve for what I have lost, but there are so many more days now when I can appreciate what I have right now.
