When I pack my bag to go to my in-laws’ house for Christmas, I have to bring a whole bag of medicines. There are migraine medications, thyroid medications, anti-anxiety medications, antidepressants, anti-nausea pills, pain medications, and rescue medications. 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 chronic illness, and the holidays are no exception. In my experience, the chronically ill body is a body that works best when it adheres strictly to schedules and routines. To say that I am a creature of habit would be an understatement. I thrive under a strict routine, and habits are guardrails on my highway of diseases. My body works 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 in the morning. Oatmeal and egg sandwiches for lunch). It’s not just a preference, I’ve noticed that my migraines increase when I wait too long to eat or I don’t get enough sleep.
And what are holidays if not a break in routine? For most people they are not a time for a rigid schedule. My dream is to be able to talk with friends late at night without worrying that a migraine will greet me in the morning. I would love to drink a few glasses of red wine without knowing that it will flare up the pain. I want to go with the flow and be able to hang out with the family, since I don’t get a chance to spend that much time outside during the holidays.
I dream of not living like this.
but it’s not like that. If I want to control my illnesses in a meaningful way, I have to create and stick to a schedule and give up things I would rather 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 our friends should meet us. I want to do it late enough that everyone has had dinner and seen their families for the day, but also early enough that I’m not tired and out of spoons by the time we start the festivities. . We have a family event before a birthday party, and I wish I were the kind of person who could make two outings in a row without worrying that I’d dry-swallow Tylenol and drink espresso in between them, but I am not like that.
So what does this mean? This means I know in advance that I will spend the day rested before family events and birthday parties, and I will make sure I sleep in the next day. I’ll be especially careful to drink enough water and eat enough food that day to further control my symptoms, and I’ll also keep migraine relief medicine in my purse in case it all gets too much.
I dream of not living like this. Life in a chronically ill body feels a lot like what I imagine it would be like, a wild animal trapped in a cage. If I could, I’d watch movies late with my in-laws, and we’d drink wine and eat dark chocolate, and the price I paid for those indulgences didn’t hurt. But the truth is: I know my body, and I know what awaits me if I don’t prepare. I know I would be left in a dark room sweaty with an ice pack on my throbbing head. It will hurt to chew and blink and to stand up to go to the bathroom; The sound of thoughts in my head would be very loud. The only thing I would like to do is sleep, and when it comes, it will be fitful and full of dreams. When the pain finally goes away, I’ll be exhausted, hungover from everything I’ve gained from drinking.
I know other people don’t live their lives this way. I know they aren’t as beholden to their bodies’ whims as I am, and in my worst moments, this realization makes me very jealous.
And yet even in a life full of so much pain, I am lucky.
And yet even in a life full of so much pain, I am lucky. I’ve been with my husband for almost 10 years, since I was 21, and I’ve known his family for almost the same amount of time. They’ve seen me battle thyroid cancer and migraines and a traumatic brain injury; They know what my body needs, and what’s more, I feel free to allow myself to take what I need from them. If I disappear from dinner, they know I’m resting, and they expect me to come back, but they won’t judge me if I fall asleep instead. They know that every night, before we go to bed, my husband will fill my ice pack, and my mother-in-law makes sure to buy extra bags of ice in case we run out of ice. When we go somewhere, they make sure I always have a way to get out if my symptoms become severe. In short, they give me the opportunity to manage my diseases in the best way possible. I am grateful that every day I learn that there are many people in the chronically ill community who struggle with the added pressure of unsupportive family members.
Holidays are a break, but life with a chronic illness is a life without a break. 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 limitations, and I’ll make sure there’s a bag for my medications and supplies. There should be space in the car. This is the truth about a chronically ill body and the fight to live with it rather than against it.
#Unavoidable #Difficulty #Constantly #Sick #Holidays
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