One of the strangest parts of being sick is just trying to find a comfortable temperature. As I write this, I am in a t-shirt, no pants, and wool socks. It is freezing outside, my hands and feet are frigid and white, yet the rest of me is red and hot. An hour ago, I ate dinner huddled under a blanket, with a cozy sweater+hoodie combo, eating soup… with ice packs all over my legs. My legs were hot, swollen, and filled with the terrible aching pain that comes with mast cell flares.
Heat is my most consistent (and severe) mast cell trigger. It causes me to feel fatigued, woozy, malaise-y, nauseous, and if exposed too long it will give me diarrhea and migraines. This can be heat from a hot day, someone keeping their thermostat at 70, a wood fire pizza oven in a restaurant, sun through a car window, sitting too close to someone who radiates warmth… whatever. Even on the coldest day, if I start to have a mast cell reaction, I will flush (or hot flash, as I used to call it), causing me to feel way too hot. If I don’t cool myself down immediately, I will get quite sick. This can happen from the slightest reaction — getting annoyed can do it, or smelling someone’s cinnamon tea, or even exercising. Anytime I exercise, it releases histamine. It’s not enough to give me a full-blown flare (although I know people for whom that is the case), but I will start to flush. I know what you’re thinking — everyone gets hot when they exercise. But this is different. I remember what it felt like to warm up with exercise and not be flushing. Even in the winter outdoors, a few minutes of exercise will have me in a t-shirt and sweating. And if I can’t strip down, it could ruin the rest of my day.
There are some positives to this, though. I rarely feel cold. I keep my apartment between 55-62 degrees and wear lots of layers. I have to remove layers at times, then hurriedly put them back on several times throughout the day. But it’s great to no longer pray for the VT winter to hurry up already! The six months of winter are now my happy place. It’s a pretty cool feeling, too, when I am reacting to something, and I become immune to the cold. I can walk around outside with nothing on and feel like one of the witches in Philip Pullman’s books — because the cold has no effect, I can feel the fresh air on my skin and love the feeling of being alive. The cold also helps with my inflamed joints, and brings down the swelling and other symptoms associated with POTS.
This is all well and good, but then randomly I get sudden, aching chills as if I have the flu. I sometimes actually yelp, it hits me so drastically. Even pulling down my pants to pee feels painfully cold. I curl up, snuggled in blankets and layers of warm clothing. Sometimes I become desperate and either exercise or inch up to a fire in the hopes of staving off the chills. This unfortunately tends to happen during mast cell reactions, so if I do take these steps to warm up, it will only perpetuate the reaction and lead to another hot flash.
This may seem like such a tiny aspect of my symptoms; why am I spending an entire post on regulating my own temperature? Well, it may seem small but it is so pervasive, so crucial to daily survival. It is hard to enjoy life when you’re preoccupied with being too hot or too cold, and concerned for what that could lead to. So I've learned to wear layers and bring alternative clothing options everywhere I go. I feel like an idiot. I feel like an obsessive bag lady, bringing my whole wardrobe to an afternoon visit. I’ve been mocked and given quizzical looks. It can be tough to dress myself for appropriate occasions — professional clothing, for example, is not always conducive to the level of layers I need, nor fancy events like weddings. It is, however, one of the most crucial forms of management. I’ve been able to avoid numerous flares and meltdowns by just being over-prepared for every possible temperature shift.
And finally, I’ve found some helpful tools for keeping cool. I will go into more detail about each one in an upcoming Tips and Tricks post, but here’s a quick list with links:
Spritzers/spray bottles
Personal fan