Chronic pain keeps me from doing something I was particularly fond of as a teenager: procrastinating. The (mostly) unpredictable nature of my migraines makes procrastination a uniquely bad idea for me as an adult. I do my taxes in February, shop for Christmas presents in November and pull my summer clothes out in April. I’m seriously on top of things, even though it’s not really in my nature to be quite that organized. But when you know you might lose a day — or four — at any time, it makes leaving things until the last minute a little hair-raising.
If I take a step back, I see that I obviously don’t need to have my taxes done by Feb. 17, as I did this year. My way of coping with the time stolen from me by migraines is to be chronically organized. I can feel somewhat in control that way, even if I have to spend a random Tuesday in bed watching mindless TV (all my brain can handle in that state).
My teenage self would be shocked to learn that even my fridge is organized. I don’t let the supply in my pantry or fridge dwindle — the last thing I want is to be caught at home with a migraine without Gatorade and easy-on-the-stomach snacks. When I travel, my uncool organizational systems come with me. I religiously pack my favorite granola bars and use a special compartment in my purse for nothing but medicine, including a prescription and over-the-counter remedies.
When I was younger, I didn’t really deal with the reality of having a chronic condition, even though it was present then. I started having migraines around age 10. My poor parents just thought I was moody, had “sinus pain” and barfed a lot. The barfing concerned them enough to bring me to a doctor, who diagnosed me with migraines. All the way through high school, I still had the luxury of procrastinating because I could bounce back from migraines so quickly. One minute I’d be throwing up, the next I’d be eating quesadillas at a Mexican restaurant with my mom.
As an adult, my migraines like to hang out longer. There has been more than one occasion where the pain hung around at varying levels for four days, moving from one side of my head to the other, crawling its way down my neck and shoulders, and just being relentlessly there. Thankfully, that’s atypical. But it has imparted the idea on me that I could be out of commission for multiple days in a row at any time.
That’s shaped the way I move through the world as a (mostly) responsible adult. I stopped working for a freelance client because the deadlines suddenly became much shorter. I couldn’t promise that I’d be available on a specific day — I needed a range. The working world was not built to accommodate employees with chronic pain. At my day job, many of my coworkers operate successfully despite planning to complete crucial tasks right before they’re due. When I have to work with them on a project or need their input, it causes me legit stress when they don’t respond until the eleventh hour. And if — worst-case scenario — I suddenly need to spend that day in bed, it can look (and make me feel) like I’m the one who was bad at planning.
Many people with chronic pain live like this — arranging their lives in a specific way in order to minimize chaos when pain strikes. Obsessive organization is what works for me, but there are other ways to cope with pain, too. Anureet Walia, M.D., a pain management specialist at the University of Iowa Hospitals & Clinics, recommends chronic pain patients set daily goals for what they want to accomplish — without overdoing it. She said checking in with yourself and how you’re feeling is crucial. “Even if you think you can give 100% effort, stop at 70% before you go on,” she said.
Starting your day with something that brings you joy, like yoga or meditation, is something Walia also often advises. To get through high-pain days, she said a mix of physical therapy and cognitive strategies can be helpful. An individual plan might involve stretching and exercise, but also techniques like deep breathing and imagery, which is imagining yourself in your happy place. Having these tools in your back pocket can be handy when you need them. “Incorporate these techniques into your lifestyle even when you’re not in a lot of pain,” Walia said.
Therapy can also help people manage the impact symptoms have on their lives. Walia often recommends patients seek psychological care to deal with the emotional element of pain. “We can’t predict pain, but we can learn how to live better with it,” she said.
I have some ability to predict when a migraine will come on, but it’s not perfect. It’s pretty apparent hormones are a factor, considering I get a migraine on the fourth day of my period like clockwork. If my sleep is bad, interrupted, etc., my body offers one day of forgiveness, like a mulligan. But two nights of bad sleep? I’m in for it. Patchouli (my nemesis) or other strong perfumes? I’m down for the count. And I can’t tinker with the amount of caffeine I have each morning — another area of my life where I have to be exacting rather than laissez-faire.
I struggle to allow myself time to relax when I feel good. What if I relax today, but then I can’t get anything done tomorrow? ... You end up feeling like you're only allowed to rest when you're in pain.
Beyond that, it’s anyone’s guess. Because of that, I struggle to allow myself time to relax when I feel good. What if I relax today, but then I can’t get anything done tomorrow? It’s easy to feel misplaced guilt for time spent relaxing as an adult regardless, but there’s an extra layer to it when you have a chronic condition. You end up feeling like you’re only allowed to rest when you’re in pain. I’m working on being kinder to myself about that. Sometimes I even let myself watch the “Real Housewives” when I feel totally fine.
Admittedly, it can be pretty handy that I keep my “adulting” tasks so steadfastly in order, but it’s still challenging to exist amongst people who aren’t constantly planning around pain. But I get it. I fondly remember the feeling of finishing a paper at 2 a.m. the day it was due. I’d prefer to exist as a creative type, going with the flow instead of plotting everything out on my meticulous, color-coded calendar. I have to fight the true nature of my personality to adapt to the reality of my body. As long as I don’t walk by someone in the grocery store who’s doused themselves with patchouli, I might just be able to stay on track.