And Then It Got Worse

I’ve always thought of myself as a pretty healthy person.

I don’t smoke. I don’t do any drugs. I rarely drink. I probably consume at least a gallon of water a day. I try to avoid processed food. I don’t eat a lot of sweets, and that includes soda. I’m mindful of how food makes me feel and try to adjust accordingly. I do yoga daily. I lift weights.

And now I am preparing for the long process of applying for disability at my next doctor’s appointment, which will be my first in four years. Just this past weekend, I nearly went to the ER.

How did I get here.

For those playing along at home, everything in pink is migraines.

I have been getting migraines since I was 12 years old. Back then, they were a rare occurrence. When I was in college, I remember getting migraines frequently, but no more than once every two weeks and nothing so bad as I get now. There are only a few times in college that I had to completely lie down and stop what I was doing.

When I was living on my own in my early 20s, the migraines were once a month. Though they were not getting increasingly frequent, they were getting increasingly painful. It was at 25 that I had my first migraine where I couldn’t eat all day and constantly worried I would throw up. I asked my doctor about them; he told me it was just stress and not to worry about them.

At 27, I left my job as an indie bookstore manager and began working for Target part time (which is to say the maximum allotment you can work without getting in trouble, 38 hours a week) under pricing and presentation. When I was renting a room at friends house, I recall the migraines were getting A Lot Worse but not so much that I couldn’t function. I remember needing to turn down a lot more social engagements because of them, but I was still keeping up with all three jobs. The jewelry orders were going out. The editing deadlines were being met. I called out of Target all of once, and that was just for the flu.

Then I moved into my current rental house in the summer of 2017, and by the fall of that year my migraines had gotten debilitating. They were far more painful and far more often. At the top of 2018, I was forced to shut down my Etsy custom engraving business. By the spring of 2018, I finally started to accept that I had chronic migraines. I found out the first trigger was blue light. My migraines were coming on three days a week, and instead of being Okay the following day, I was a complete wreck. No short term memory. No appetite. Some days I could barely stand, let alone lift heavy fixtures to do my job. So I quit Target in the summer of 2018, which is on file as due to chronic migraines, and found a job writing content for a marketing company from home.

Things were better, until they weren’t.

For the first month after leaving Target, everything was great. My migraines were only coming on once a week, and the postdrome symptoms the following day were much lighter and some days nonexistent. I had my energy back. I was writing again, and finally felt ready to get back to publishing. I started getting back to social media and networking, and even got the word out that BPS 2 was now slated for an August release.

And then it got worse.

Fall came and with it my little migraine reprieve was shattered. September 2018, I could tell my mood had changed and I didn’t like it. I read that there was always a Chicken/Egg question as to whether migraines cause depression, or depression causes migraines. I can’t tell you which is the truth, but I can tell you that fall and winter of 2018 was a disaster.

The migraines were back up to three a week and the symptoms were worse than ever. Nausea was a constant problem. My appetite was barely there, and when I could eat I was eating heavily processed carbs just to get something that would sit peacefully in my stomach. I put on over 20 pounds. My depression became so debilitating that for months I didn’t do anything other than work. Fear of abandonment weighed heavily. I felt like I was failing at my writing career, being a friend–everything that matters most to me. I was now six months behind on publishing the second Bulletproof Spy novella. I wasn’t reading. I wasn’t even writing. I didn’t create a single thing until I started chatting to people on tumblr again, and made a new circle of friends in the Ripper Street fandom. I started writing a fanfic, which I’m still working on slowly, just to make something. Something without a deadline and the weight of what felt like my entire career hanging over it.

Near the end of 2018, I found the second trigger was hormone changes due to my period. I cried. I could avoid blue light, it was frustrating and meant I could never work in an office capacity, but it could be done. But this? I couldn’t just stop my period from happening. To make matters worse, OTC drugs were no longer working at all. I felt doomed and utterly defeated. What was once an occasional annoyance had somehow become an unstoppable agony that was slowly ruining my life.

But the migraines did give me one good thing. Quitting Target took a hit to my income, a big enough one that I was finally poor enough to qualify for totally free healthcare because I live in Massachusetts. For the first time in four years, I can now afford to make a doctor’s appointment.

My life is not what it was five years ago. It’s not even what it was two years ago. There’s a section in my day planner just for keeping track of my migraine symptoms. I have a friend in Russia, who also suffers from chronic migraines, who helps me with home remedies when Excedrin doesn’t cut it. I can’t be in flash photography without collapsing from blue light exposure. My brother’s cologne can give me a migraine that lasts all day. Where my period was once an inconvenience, it exists now as the week of the month I plan my life around, because it will undoubtedly include a Day Ender level migraine (I had my period just last weekend, and nearly ended up in the ER from it – I opted to stay home because I was doubtful the drugs would even do me any good.)

But I’m adapting. I’m learning to do less and with more focus. Thanks to the state of Massachusetts, I am finally beginning the long road of my migraine treatment. I’m not sure what’s going to happen. My appointment in two weeks could go really well, or it could end very badly. There’s no way of telling. All I can tell you for certain is, that I will be chronicling the whole process, from medical testing to brain scans to experimental drugs, all while continuing my career in publishing.

Welcome to the chronically ill with ADHD versus my end goal of hybrid author balancing act.

It’s gonna be a wild ride.


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