I've been a bit slower than usual with my posts the last two months, in large part due to the challenges of traveling and visiting family while living with chronic migraine. So I figured why not write about it?
Living with chronic illness involves a constant set of trade-offs. There are all the things you want to be able to do, and then all the costs you know you'll inevitably pay.
I deeply want to be a person who is full of energy. I want to be a person who just "gets up and goes" most days. Whose "healthy lifestyle" is enough to keep my body chugging along in prime condition.
And yes, some days I am that person. But a lot of days I'm not. Which is something I'm learning to better accept about my life.
So what happens when, after two-and-a-half years of isolation, I decide to furiously schedule back-to-back family visits, followed by a winter stay at our house in Sicily?
What I Learned from Getting Comfortable with Isolation
For the first two-plus years of the pandemic, Marco and I learned to get very comfortable with isolation. That included not visiting family or traveling at all. Luckily, as two introverted writers, we are very well suited to quarantine.
Plus, as a person living with chronic illness, quarantine brought unexpected benefits. The ability to work remotely full-time was a transformative experience. All of a sudden the world became much more accessible. I spent less time calculating the energy and health tradeoffs of otherwise mundane activities like commuting or sitting in conference rooms with too-bright fluorescent lights. Early in the pandemic, I realized how hard the "before times" had been for my body, and knew I could never go back.
This blog is a part of how I remind myself that I have to keep working and adapting to find a better way to live with chronic illness—and not fall back into old patterns.
Marco and I also stayed isolated to protect our families. Pre-vaccine, we worried about our ability to avoid exposures—since we live in an NYC apartment building and I have regular doctor appointments—and stayed away from family out of an abundance of caution. Once the vaccines came out, I ended up immediately going in for hip surgery, which was followed by a difficult year-long recovery where travel simply wasn't possible due to pain and mobility limitations.
Even our travel from Brooklyn to Connecticut for Marco's mother's funeral in February 2022 was physically challenging for me. But by May 2022, Marco and I were both ready and physically able to travel. We ended up contracting COVID-19 two weeks before heading to Sicily for the summer, but recovered well and were less worried about immediate reinfection while traveling.
Muscling through Migraines for Long-Postponed Family Visits
Upon our return from Sicily at the start of August, we spent three-and-a-half months catching up on family visits (and getting my medications approved with our new insurance). I knew it would be physically challenging to do a lot of travel, but I also knew it was important. So, I figured I'd rely on my well-honed ability to "muscle through" migraine symptoms while traveling.
We visited Marco's father in Connecticut twice, then in October headed to Colorado to see my family.
While my family is originally from Washington State, my parents, sister, brother-in-law, and two adorable nieces spent several years living in State College, Pennsylvania.
During the pandemic, my sister went above and beyond to keep our family safe. Even as she and her husband both worked full-time, they managed with part-time childcare so they could stay podded with my parents. Being able to stay connected to their granddaughters, Alice and Henni, has meant so much to my parents. And I'll be eternally grateful to my sister for the sacrifices she made to keep our parents safe and bonded with the kids.
In 2021, itching for more access to hiking, camping, and cycling, my sister landed a job as a statistics professor in Golden, Colorado. Mid-pandemic, my whole family packed up and moved across the country.
Because I often get migraines from air travel, we knew we'd need to plan for an extended stay in order to have any fun family time. Plus, my dad was getting a knee replacement, and Marco and I wanted to be there to help out with his recovery. So, we planned a month-long stay in Colorado.
Altitude and Migraines Don't Mix
While Colorado is gorgeous and it was wonderful seeing my family, my migraine situation was more difficult than I anticipated.
But really, I should have anticipated it. Just look at the triggers!
Golden, Colorado, is right outside Denver—which sits over 5,000 feet above sea level.
Altitude can trigger headaches in people, even those without chronic migraines.
The last time I was in Denver, just before the pandemic, we took a flight back to New York and I ended up in the ER for the first time with a migraine.
I was two months into the process of stopping my Botox-for-migraine treatments after nearly fourteen years of getting injections every three months. The muscles in my forehead, temples, head, neck and shoulders have been slowly un-paralyzing. It was just one more "trigger" to add on top of everything else.
In short, I was doomed to get a migraine that wouldn't go away. I ended up going through two courses of multi-day rescue med protocols that my neurologist uses when I have a migraine that lasts several days. It took about twelve days, but the migraine finally eased up.
Yes, it sucked, but the migraine wasn't what frustrated me. What frustrated me was that I didn't prepare myself for the challenge of wanting to spend lots of time doing fun stuff—but not having the energy or capacity to do so. I imagined I would get off the plane, rest for a couple days, and then enjoy finally seeing my family for the two weeks before my dad's surgery.
I imagined I was someone else.
Farewell, Imaginary Camellia
I spent that first week-and-a-half trying to be someone who hasn't existed for a long time. For some reason, seeing my family after so much time away, I suddenly wanted so badly to be a person who didn't have migraines.
And I tried to be that imaginary Camellia. I tried so hard. Which only made things worse.
I got up early in the morning to do freelance work. Then we went out for scenic walks with my parents and, on the weekend, to see my nieces. While my parents napped in the afternoon, I did more freelance work. Then we'd all get together again before dinner, usually on the back deck of my parents' apartment complex. Finally, Marco and I would have dinner with my parents and get home in time to go to bed. But of course, sometimes I'd stay up a little longer and finish freelance projects.
It was too much, but I couldn't let go of the need to be able to do everything I wanted.
It wasn't until my dad suggested a slower pace that I realized I needed it too. So for the last few days before his surgery, my parents and I decided to rest a little more, run around together a little less.
And you know what? We may have had fewer adventures, but the moments together were even more magical.