The Slow Recovery: Living with chronic migraines

I live with migraines. It’s not something I’ve ever bothered talking about at length until recently. Why? Because I’ve never thought of it as anything truly worthy of note. It’s just my life. Sometimes it sucks and it’s awful, but that’s everyone’s days, right? People deal with this shit all the time, yeah?

Not yeah. I am a foolish recluse who had no idea just how bad I had it until one day when I was in the breakroom at Target, and a commercial came on the TV for Botox. But the ad wasn’t for cosmetic use, it was for the treatment of migraines. I’d heard of this before in my previous work as a technical writer for medical practices. The ad says near the end, to try and encourage people to their doctors, “If you suffer from one migraine every month, talk to your doctor to see if Botox is right for you.”

At that point I doubled over laughing, which was bad cause I was dizzy and disoriented from a migraine. One of my co-workers asked what so funny, and I told her a migraine a month sounded like a vacation. Her jaw nearly dropped. “How often do you get migraines?” she asked.

“Two to three times a week,” I said.

“Holy shit, Sue.”

I shrugged. It’s just my life, sometimes it’s shit. I accept it. At the time, I was trying to drink my tea and make my stomach settle down so I could go back on the floor. When I did go back, and had to help a friend and co-worker reset a section. I told her “So, I guess I have chronic migraines? I had no idea. That’s a thing?”

She looked at me dumbfounded. “I thought you knew this! You didn’t know?”

I shrugged as the grating behind her started moving in wavy lines in my vision again. “It didn’t really cross my mind.”

This was about three months ago. I’ve had migraines all of my life; they’ve gotten far worse since working retail. What was about once a month is now nearly half of my week gone.  With the rare exception of a few close friends, no one even knew I got migraines so often. As with most chronic illnesses, people see you functioning and just assume you’re fine. And that’s just the day of head pain, not even counting the side effects after the fact. A migraine for me means short term memory loss, dizziness, fuck all for spacial reasoning, nausea, vomiting, sensitivity to light, smell, and sound, depression and anxiety, and the newest development: visual phenomena, which for me means repeating shapes and patterns fucking move. And that’s just during the attack.

I am, in short, a useless, anxious mess who can’t even remember the last line they’ve read, let alone where I put a glass of water down a minute ago. I can even take things out of the fridge and completely forget doing it–super fun to find the next day.

The frequency of these migraine attacks had gotten to a point where I could not keep up with my life anymore. I had to get deadline extensions from editing clients. I had to put off publishing my own books on time just to finish work for my editing clients even close to on time. I closed my jewelry shop and kept pretty quiet on social media. What did I have to say? I get migraines a lot. I wasn’t doing anything else other than trying and failing to be creative and do the things I love.

But I’ve made progress. I’ve concluded that the most likely culprit is blue light, which I discovered from spending a week at a writing retreat on Cape Cod–it was my first week without a migraine in over six months. I went eight days in total. It was the greatest vacation just for this alone. Blue light is present everywhere in my rental home, and at Target. And I never even knew it could present an issue. I’d been told different things about diet, which I wrote off because my diet hasn’t changed in years. The frequency of migraine attacks started getting worse last spring, peaking to three times a month this spring.  The lighting was the only thing that changed–I started Target last February and moved into the new rental home last July.

I’ve bought lamps with yellow light bulbs. I left Target on June 15th. Things are not perfect, but I am already down to one migraine a week. It may not seem like much, but that’s only a third of what I had been dealing with before! I have energy for life again, and I no longer feel overwhelmed. I’m already able to keep up with my day to day tasks for the most part. It’s not perfect, and it probably won’t be until I can get my health insurance sorted and get a doctor to finally start getting me on a migraine treatment plan (past visits have lead with my doctors just telling me to “stress less”).

I’m hopeful. I’m working to apply for disability with chronic migraines–as of now this means I cannot work a regular job without debilitating symptoms–but I’m already feeling and doing better, something I had given up on a long time ago. And I’m ready to take my goddamn life back.