When I pack my bags to go to my in-laws’ house for Christmas, I have to bring an entire bag of medication. There are migraine meds, thyroid meds, anti-anxiety meds, antidepressants, anti-nausea tablets, pain meds, and rescue meds, among others. There’s my weekly pill organizer and ice packs and sleeping mask and earplugs.
It’s not just the packing process – everything is more complicated with a chronic illness, and holidays are no exception. In my experience, a chronically ill body is a body that functions best when it rigidly adheres to schedule and routine. To say I am a creature of habit is a great understatement. I thrive under a strict routine, and habits are guardrails on the highway of my illnesses. My body functions best when I go to sleep by 10 p.m. and eat the same things at the same time (relying on “safe foods” that I know won’t trigger my symptoms, like oatmeal in the morning and an egg sandwich for lunch). It’s not just a preference – I notice that my migraines flare when I wait too long to eat or I don’t get enough sleep.
And what are the holidays if not a break in routine? They simply aren’t a time for rigid schedules for most people. I dream of being able to stay up late into the night talking with friends without worrying that a migraine will greet me in the morning. I would love to drink a few glasses of red wine without the knowledge that it will spark a pain flare. I want to go with the flow and be able to hang out with family that I don’t get to spend nearly enough time with outside of the holidays.
I dream of not living like this.
But that’s not how it is. If I want to control my illnesses in a meaningful way, I have to prepare and abide by a schedule and skip things I would prefer to indulge in. Right now, I’m planning a birthday party for my husband (whose birthday is on Christmas!), and we’re trying to figure out what time we should have friends meet us. I want to do it late enough that everyone has had dinner and seen their families for the day, but early enough that I’m not exhausted and out of spoons by the time we start the festivities. We have a family event before the birthday party, and I wish I were the kind of person who could do two outings in a row without worrying that I’ll be dry-swallowing Tylenol and chugging espresso in between them – but I’m not.
So what does this mean? It means that I already know I’ll spend the day resting before the family event and the birthday party, and I’ll make sure I sleep in the next day. I’ll be especially careful to drink enough water and eat enough food that day to control my symptoms further, and I’ll keep a rescue migraine med in my purse in case it all becomes too much.
I dream of not living like this. Life in a chronically ill body feels like what I imagine it would be like to be a wild animal trapped in a cage. If I could, I would stay up late watching movies with my in-laws, and we would drink wine and eat dark chocolate, and the price I paid for those indulgences wouldn’t be pain. But the truth is this: I know my body, and I know what is waiting for me if I don’t prepare. I know I will be left in a dark room with a sweating ice pack held to my throbbing head. It will hurt to chew and blink and stand up to make my way to the bathroom; the sound of the thoughts in my head will be too loud. The only thing I will want to do is sleep, and when that comes, it will be fitful and full of dreams. When the pain finally leaves, I will be exhausted, hungover past anything I’ve ever managed to reap from drinking.
I know this isn’t how other people live their lives. I know they aren’t beholden to the whims of their bodies the same way I am, and in my worst moments, this realization leaves me achingly jealous.
And yet even in a life with this much pain, I’m lucky.
And yet even in a life with this much pain, I’m lucky. I’ve been with my husband for almost 10 years, since I was 21, and I’ve known his family for nearly as long. They have seen me battle thyroid cancer and migraines and a traumatic brain injury; they know what my body needs, and more than that, I feel free to allow myself to take what I need in front of them. If I disappear from dinner, they know I’m taking a rest, and they hope I’ll be back, but they won’t judge me if I just go to sleep instead. They know that each night, before we go to bed, my husband will fill up my ice pack, and my mother-in-law makes sure she buys extra bags of ice if we’re running low. When we go somewhere, they make sure I always have a way to leave if my symptoms become overwhelming. In short, they give me the space to manage my illnesses the best I can. I’m grateful for that every day – I know that there are many in the chronically ill community who deal with the added pressure of unsupportive family members.
Holidays are a break, but a life with a chronic illness is a life without breaks. How I wish it were otherwise. In the meantime, I’ll make sure all my medications are refilled and packed, and I’ll thank my family for understanding my limits, and I’ll make sure there’s room in the car for my bag of meds and supplies. This is the truth of a chronically ill body and the fight to live alongside it instead of in opposition to it.
