The inevitable hardship of being chronically ill during the holidays

When I pack to go to my in-laws for Christmas, I have to bring a whole bag of medicine. There are, among others, migraine medications, thyroid medications, anxiety medications, antidepressants, nausea medications, pain medications, and rescue medications. There is a weekly pill organizer and ice packs and a Sleep Mask and earplugs.

It’s not just a packing process, everything is more complicated with a chronic illness, and the holidays are no exception. In my experience, a chronically ill body works best when it follows a strict schedule and routine. To say I’m a creature of habit is a huge understatement. I thrive under a strict routine, and habits are guardrails in the way of my illnesses. My body works best when I go to bed at 10pm 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 find my migraines come on when I wait too long to eat or don’t get enough sleep.

And what are vacations if not a routine break? Most people simply don’t have time for tight schedules. I dreamed of being able to stay up late and chat with friends without worrying that a migraine would greet me in the morning. I would like to drink a few glasses of red wine without knowing that it will provide pain relief. I want to go with the flow and spend time with family that I don’t get to spend nearly enough time with outside of the holidays.

I dream not to live like this.

But that’s not how it is. If I want to manage my illnesses in a meaningful way, I have to prepare and stick to a schedule and skip the things I 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 friends should meet us. I want to do it late enough that everyone has eaten dinner and seen their family during the day, but early enough that I’m not exhausted and out of spoons when we start the party. We have a family event coming up before a birthday party, and I wish I was the kind of person who could do two outdoor activities in a row without worrying about swallowing Tylenol and drinking espresso in between, but I’m not.

What does this mean? It means I already know I’ll rest the day before family events and birthday parties, and I make sure I sleep the next day. I’m extra careful to drink enough water and eat enough food that day to further control my symptoms, and I keep a rescue migraine medicine in my bag in case it gets too much.

I dream not to live like this. Life in a chronically ill body feels like what I imagine being a wild animal trapped in a cage. If I could, I’d stay up late watching movies with my in-laws and we’d drink wine and eat dark chocolate, and the price I paid for those indulgences wouldn’t hurt. But the truth is this: I know my body and I know what awaits me if I don’t prepare. I know I will be left in a dark room with a sweaty ice pack held on my throbbing head. It hurts to chew, blink and get up to go to the bathroom; The sound of the thoughts in my head is too loud. All I want to do is sleep, and when it comes, it’s in good shape and full of dreams. When the pain finally wears off, I’m exhausted, hungover beyond anything I’ve ever managed to get from drinking.

I know other people don’t live their lives like this. I know they don’t own their body’s quirks the way I do, and in my worst moments, that realization makes me painfully jealous.

And yet, even with so much pain in my life, I’m lucky.

And yet, even with so much pain in my life, I’m lucky. I’ve been with my husband for almost 10 years, since I was 21, and I’ve known his family for almost as long. They’ve seen me fight thyroid cancer and migraines and traumatic brain injury; they know what my body needs and on top of that I can freely allow myself to take what I need in front of them. If I disappear from dinner, they know I’m resting and they hope I come back, but they don’t judge me if I go to bed instead. They know that every night before we go to bed, my husband fills up my ice pack and my mother-in-law makes sure to buy extra bags of ice in case we run out. 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 as best I can. I am grateful for that every day, I know there are many in the chronically ill community dealing with the added pressure of unsupportive family members.

Vacations are breaks, but life with a chronic illness is life without breaks. How I wish it were otherwise. In the meantime, I make sure all my meds are filled and packed, thank my family for understanding my limits, and make sure there’s room in the car for my med bag and supplies. This is the truth about the chronically ill body and the struggle to live with it instead of against it.

#inevitable #hardship #chronically #ill #holidays
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