CN: extensive and detailed discussion of chronic illness symptoms such as nausea, brain fog, and difficulty eating; discussion of weight loss
One day, after taking a short walk, I had a strange health episode. I was incredibly exhausted, totally disproportionate to the amount of walking I had done. I sat down in the chair in the kitchen as soon as I got in, too tired to go all the way to my bedroom, and then I had to sit there for a full twenty minutes before my energy returned enough to stand up.
I was having similar episodes after eating lunch each day, with the added bonus of intense waves of nausea, making finishing my food increasingly difficult. Back in May 2019, I wrote this paragraph as part of my article “A Day in the Life of Ehlers-Danlos Syndrome”:
“My appetite problem has gotten worse. Over time it has continued to decrease and the nausea lasts longer. I tried eating pieces of candy with my meal to digest my food, but it didn’t help. I began drinking milk with my food as it seemed to settle my stomach but that stopped helping too. Tums and probiotics do nothing. For some reason, the nausea is worst at lunchtime, and for 2-3 hours after I eat, I feel too exhausted to move. I feel hot, almost feverish, and my heart pounds, as I sit still, trying to digest my food. I can’t concentrate. It gets so bad that one night I opt to not eat rather than risk the consequences of putting anything in my stomach.”
And then later I wrote about this experience I had in the same time period, from when I attended an event and had not brought any of my own food:
“My shakiness from lack of food had progressed significantly and I looked in vain for something gluten-free with a high sugar content to help reduce it. At first, I came up empty and then, aha! The punch! I approached the lady serving small teacups full of punch and asked for a cup. She filled it and passed it to me. I was painfully aware of my hand, shaking so hard that I needed to grip the cup with both hands to keep it from spilling. I wondered what the punch lady thought of a 20-something whose hands behaved in a way that you might expect from a 70-something.
I downed my punch quickly and came back for another cup, still shaking. Once I finished the contents of my plate and my cup, it took too much physical energy to hold them steady in my hands, so I put them down.”
By the time the incident after my short walk happened, I was starting to lose weight from how much I was struggling to eat. After months of suffering, I finally decided to take the problem to my doctor.
I described the issue to her and pretty quickly, my doctor said, “It sounds like you’re having an auto-immune reaction to the pollen outside.” And just as quickly, I said, “Oh, you’re talking about Mast Cell Activation Syndrome.”
What Is MCAS?
To back up a little bit: Thanks to social media, even folks with an unusual condition like EDS can connect online with other people who have the same condition and learn all the commonalities that you have with them that a doctor would never tell you about. Included in these commonalities are often comorbidities, aka, other illnesses that you are diagnosed with alongside your main condition.
I knew from my conversations with other EDS patients that the vast majority of them also had Mast Cell Activation Syndrome. WebMD defines the condition like this: “Mast cell activation syndrome is a condition that causes mast cells to release an inappropriate amount of chemicals into your body. This causes allergy symptoms and a wide range of other symptoms.”
And quite a wide range it is. MCAS can cause hives, swelling, low blood pressure, difficulty breathing, diarrhea, and even anaphylaxis. I had heard my friends complain about the stress of having to figure out which one of an infinite number of environmental triggers was causing their reactions; everything from avoiding certain foods, to the material their clothes were made of, to walking by someone wearing strong perfume. MCAS is also more relevant to current discourse than ever because there seems to be a direct connection between MCAS and Long Covid. It is possible that the sudden uptick in MCAS patients as a result of Covid-19 may result in more research and better treatment options down the road.
I had hoped I would never develop the condition, especially since it seemed it could suddenly worsen or develop new triggers at any time. But I also knew that there was new evidence to suggest that EDS, POTS, and MCAS were genetically related, meaning, there was a significant chance I would develop the condition, eventually. In Kate Horowitz’s article, “One Gene Mutation Links Three Mysterious, Debilitating Diseases” she explains the connection between the three illnesses like this:
“When [the scientists] looked at the DNA results of people with high tryptase levels, they found that all of them also had the TPSAB1 mutation. The scientists then interviewed a number of these supposedly hearty specimens and found that all of them were living with symptoms that sounded suspiciously similar to those of EDS-HT, POTS, and MCAS. They’d just never been diagnosed.”
Having this background knowledge, my doctor and I were able to target treatment options that took mast cell into account. We started with a combination of medications and lifestyle adjustments and later expanded to involving an allergy specialist for further treatment options.
During that first conversation with my doctor, she said, “You should try to reduce your exposure to pollen.”
I blinked. I live in the pollen capital of the country. People who’ve never had allergies in their lives come here and develop them, just because of the sheer quantity of pollen that’s around. How on earth was I supposed to reduce my exposure to it? The answer: Initiate a process of implementing a dozen lifestyle changes, experimenting with medications, and otherwise identifying triggers, thereby completely turning my life upside down. There was a lot to adjust to.
Wear an N95 Mask Whenever You’re Outside
That’s right, I was wearing N95s before it was cool. A full year and a half before the onset of the pandemic, every pollen season I needed to wear an N95 Mask 100% of the time that I was outside.
The first year I made do with the standard white medical ones but they were uncomfortable, didn’t fully fit my face right, and were difficult to take on and off while also wearing glasses. People saw the mask and assumed I was ill so I got to sit by myself on the bus 80% of the time. I was very conscious of looking different from everyone else in an overtly medical way. I later discovered re-useable N95 masks that had pretty fabric covers and once I found the right size for my face, I settled on a bright pink one with two vents, recommended for glasses users. The personalized mask also helped me adjust my identity along with the habit. The winter after I started wearing it, remembering that I’d have to start wearing it again that spring always filled me with dread. I would just think, “I don’t want to, I don’t want to, I don’t want to” over and over. I did not like being The Person Who Wears A Mask. Putting on a pink N95 mask was part of my process of accepting that this is just another way I manage my chronic illness now, and it doesn’t change my quality or value as a human. And since the pandemic, mask-wearing no longer has the same set of associations it once did.
Never Eat Outside
Did you know that you can’t eat while you’re wearing a mask? Well, duh but as someone who doesn’t own a car and who can’t eat restaurant food because of dietary restrictions, it’s actually rather difficult to find indoor public spaces that allow outside food. During long car trips in the summer, my boyfriend and I would sit, eating lunch in his car, doors and windows shut, no AC, and scarf down our food before the temperature in the car climbed above 100 degrees.
Clean Everything More Often
It’s very difficult to minimize your time spent outside when your main methods of transportation are walking and waiting (outside) for the bus. Once home from my many appointments, I would immediately strip all my clothes off and put them in the laundry hamper. I would then either put on an entirely new set of clean clothes or preferably, I would hop into the shower. If I didn’t shower before bed, the pollen that stuck to my hair or my skin would transfer to my sheets and pillowcase at night, and then I’d be sleeping in pollen all night long. As often as possible, I did everything outside-related in the first half of the day so as to only go through this long process only once a day. I also began changing out my sheets and towels more often and regularly washing my entire set of blankets to keep pollen from building up on them.
Between the extra changes of clothes and linens, I had to do laundry much more often which, ironically, required me to go outside. My laundry unit is out the door, down the stairs, and around the other side of my apartment building. Laundry day was a truly painful process: gather laundry, put on mask, walk outside and put laundry in washer, go back inside, take off mask and change clothes, wait for timer, change clothes again and put on mask, outside, transfer laundry to dryer, inside, take off mask, change clothes, wait, put on mask, change clothes again, bring laundry inside from dryer, take off mask, put pollen-clothes in hamper, and finally finish with a shower. It was exhausting.
From the beginning, my doctor prescribed me the standard first-line treatments for MCAS: a combination of H1 and H2 blockers, aka an anti-histamine and an anti-acid. Many H1 and H2 blockers are available over the counter and after trying name brands and generics of a bunch of different medications and navigating the resulting levels of efficacy and side effects, I eventually settled on Zyrtec and Tagamet. Once I found the right dosage and right times of day to take the pills, this combo drastically improved my appetite. When I skipped them, I would have to work incredibly hard to get myself to finish a meal. When I took them, eating took hardly any effort at all.
Tagamet is one of the least popular anti-acids available over the counter and as such, I found my pharmacy usually only had a couple of boxes available at a time, and often they would run out entirely. My allergist later recommended I take 4 pills a day so I went through these little packages of 30 pills very quickly. I was constantly scrambling to keep enough medication on hand to successfully eat my food. I was so thankful when Amazon started offering to ship them with their subscribe and save option, so now I always have 4-5 boxes of them on hand.
When I started seeing my allergy specialist, she added Singulair– another allergy medication– and gastrochrom— a mast cell stabilizer, to my medication list. The improvements to my symptoms that I saw after adding the mast cell stabilizer further confirmed to my allergy specialist that my issue was in fact mast cell based. Because pollen seemed to be my primary trigger and my symptoms were mostly managed with medication, it’s likely that I have a pretty mild version of MCAS. Many people who have it are debilitated by this condition alone.
Changes to My Body
By the time we found the right combo of medications and life changes that brought back my appetite consistently, I had lost a significant amount of weight simply because I couldn’t eat enough.
Sudden weight loss due to illness like this can be very serious, but fortunately, this weight loss didn’t harm me. I was now losing the extra weight I had gained at the onset of my disability, and even as my appetite came back, I seemed to balance out at a similar weight to what I was pre-disability. It was a positive thing in that less weight on my body was less weight for my joints to carry around, which in turn made me more physically active and better able to maintain the weight in a healthy way once I was eating a healthy amount again. I was also able to fit into clothes I hadn’t worn in a long time, which was very satisfying.
Ironically, the only negative to this change was how many people complimented me on how much better I was looking, how much healthier I looked. Everyone assumed that my weight loss translated to greater health, even though my weight loss was caused by my illness.
Keep the Windows Shut
When my doctor first suggested that I reduce my exposure to pollen, my immediate thought was, “What will I do when the weather gets warm?”
My apartment complex was built when Oregon was not yet so impacted by climate change and most buildings didn’t need air conditioning. As such, our apartment could only be cooled by opening windows. I would have to stop doing that.
My doctor recommended I buy a window AC unit and basically just hang out primarily in my bedroom during the summer, so the rest of the apartment could be cooled by the windows and I wouldn’t be as exposed much to the resulting pollen. I remember how terrible life sounded had I followed this advice. I could not do my PT exercises, I could not cook my food to accommodate my dietary restrictions, and I could not spend time with my boyfriend in his room. I could not have a life.
To avoid this fate, I spent days shopping on Amazon for the best AC unit I could afford to buy, and my boyfriend and I committed to not opening the windows that summer. I also found the budget for an air filter, which I would run 24/7. Unfortunately, the AC unit was not designed to cool down an entire apartment on its own, so every summer we suffered through the hottest days.
The AC also introduced a new set of problems. I didn’t know it then but portable AC units, the kind where the unit stands inside the room and pushes hot air out the window through an attached hose, are always loud because of the way they function. My window wouldn’t support a much quieter window-AC unit so we had no choice. With the AC on, it was too loud to make a phone call in my room, and added to that was the noise of the fan we placed in my doorway to try to push some of the cool air from my room to the rest of the apartment.
It was so noisy, there was no way I could sleep while the AC was running at night. But after multiple 100+ degree days in a row (as has become increasingly common thanks to climate change) it was too hot not to run it overnight. I attempted to use earplugs to assist my ability to sleep. They worked but my ears ached from the foam pushing on their insides and after two nights of wearing them, the insides of my ears began to itch unbearably. If I absolutely could not avoid running the AC at night, I could not tolerate running it more than 2 nights in a row. Every heatwave would send my anxiety up, worrying about how I was going to balance managing the heat with my need for sleep.
In June of 2021, our city hit a record-breaking 112 degrees at the end of June, after a week of weather in the high 90s and 100+ degrees leading up to it. We ran the AC all day and all night and I slept in the living room– the hottest room in the house– to decrease the noise’s impact on me. But even so, on the hottest day, the coolest room in our apartment was 87 degrees. Even sitting directly in front of the AC and fan was unbearably hot. There was no way we could turn the AC off that night and there was no way that I could sleep a third night with the AC on. I had to leave my home. Instead, I spent the night in a blissfully air-conditioned hotel room, wishing deeply that everyone had access to what had become a basic necessity to my daily living.
Noise-Induced Brain Fog
I had been aware for at least a few years that when a fan or whirring heater was running nearby me, my ability to concentrate decreased. Whenever a fan was turned off, I would feel the tension leave my body and breathe a sigh of relief. I was apparently sensitive to the sound of white noise.
What I didn’t realize was that the new AC + fan set-up meant that my ears were being blasted with white noise from the moment I got up in the morning to a few minutes before I went to bed at night. My ears would be literally ringing for a good 10 minutes after I turned the AC off for the day.
It took me a while to recognize the cognitive impact this noise was having on me. I started having a really hard time focusing. I found myself switching rapidly between tasks as if trying to stimulate my brain more to get it moving. I’d sit down to write and my brain would go completely blank. If I tried to read an article, my brain would quickly lose track of what I had read thus far and I’d get confused. At its worst, within a two-day period, I accidentally cut myself several times while chopping with a knife and banged my knee on a piece of furniture I definitely knew was there, twice. Something was wrong.
My doctor was the one who put together that my brain was so overstimulated by the noise, it was shutting down. My attempts to treat my newly aggravated brain fog were a journey all on their own and it’s still an issue I deal with to this day. Sound-canceling headphones are my bread and butter and I just assume that from May until mid-July, I won’t be able to do anything that requires a high level of focus or concentration.
Between the brain fog and the degree to which pollen season still drains my energy, I lose what functionality I do have with my already disabled body, for at least a quarter of the year, every year.
But All Is Not Lost
Sometime in early 2021, I was scrolling through Facebook when I noticed a post in a mast cell Facebook group I’m part of. I didn’t participate much anymore because most of the posts were variations of “Which of these ingredients made me sick?” and the answer with MCAS is basically always “It could be any of them.” I just happened to notice what turned out to be a very important comment.
Someone experienced in using the mast cell stabilizer medication was explaining to a new user that it’s important to store the little ampules of liquid inside the silver packaging they come in, in an enclosed space away from light. Sunlight reduces their efficacy. I stared wide-eyed at my strip of connected plastic ampules sitting on my bedside table, the sunlight streaming in through my translucent blinds.
The next time I opened a new box, I carefully preserved the packaging, placed the remaining ampules inside of it, and put the whole thing inside a drawer, away from light. And something very miraculous happened. My symptoms started decreasing drastically.
And once pollen started up, my symptoms continued to stay under control. I managed to go outside and not immediately shower when I returned home, without having a reaction. I even went outside for a few minutes here and there without wearing an N95 mask! While previous summers I had needed to keep the windows closed for two months past the supposed end of pollen season, by summer 2021, I was able to start opening windows again in mid-July. In the winter, I was able to reduce my H1 and H2 blocker dosages by half. I got a significant chunk of my life back all thanks to that one Facebook comment I just happened to read!
Overall, I have been very lucky in my journey to treating MCAS. Because of my inside knowledge of its connection to EDS, I skipped a potentially very long and painful diagnostic process, which for many MCAS patients can take decades to complete. My symptoms are also relatively mild and I’m lucky that there are medications that effectively treat my symptoms, when many patients will react to the medications they are given.
Moving to a New Place
After years of being stuck living where I am now, I am finally in a position to move out of my current apartment and goal #1 has been to find a place either with built-in air conditioning or a place that is compatible with window AC units. As of this writing, I have not yet signed a lease for a new place but my goal is to have moved before the end of the summer, and hopefully before the next real heatwave.
You may be wondering, have I considered just not living in the pollen capital of the country? Yes, I have. Besides having the majority of my community in the city I grew up in and many roots here, my two physical therapists are the state experts in EDS and this is where they work. If they retired or moved elsewhere, I would consider moving to a different city at that point.
My hope is that I will continue to find ways to regain bits of my functionality and reclaim more of my life back from MCAS, as my environment and treatment plan improves. I wish the treatment and lifestyle options available to me were universally available to everyone who deals with variations of this health condition. Here’s to hoping for a combination of improvement and successful long-term management.
About the writer: Kella Hanna-Wayne is the creator, editor, and main writer for Yopp. In addition to creating a collection of educational resources for social justice, she works as a freelance writer specializing in content about her experience with disability, chronic illness, mental health, and trauma. Her work has been published in Ms. Magazine blog, The BeZine, Betty’s Battleground, and Splain You a Thing. You can find her @KellaHannaWayne on Facebook, Twitter, Medium, and Instagram.