My Migraine is a River: Coming to Terms With My Chronic Illness
Nearly all of us with chronic illness know the feeling of constant struggle. There is the fight to move through your day normally and to do the usual tasks that need to get done. There is the fight to go out and do your job, run errands, be social, to not let friendships die; to stay in tune with your partner. The fight with insurance companies, the Social Security office, emergency room doctors. Not to mention the difficulty we face when contemplating big life goals like trying finish college, finding a great job, going to grad school, or moving across the country. Or across town. When you’re always sick, everything is harder.
But I was also fighting the illness itself.
For me, it was the worst after Zo was born, in 2009. When pregnant with X in 2004, I had become chronic, but was managing to keep my head above water. I had always had severe, frequent migraines, so more than fourteen per month didn’t feel too different. But when I began having daily pain, and no more days when I felt normal, I began to panic. Part of it was my fear that my daughters would never know me as more than an inert form in a dark bedroom, and part of it was how difficult my life had become, in many ways. I became determined to find something to fix me. I had already tried every available preventative, as well as Botox, chiropractic care, biofeedback, physical therapy, and medication detox. I began to try all those things again, and then some. My wonderful family doctor worked hard to arrange a visit for me at the University of Michigan, a somewhat nearby huge hospital with a stellar reputation, which she was finally able to do. I pinned all my hopes on that visit, just like I had pinned my hopes on Botox working this time, ten years later (spoiler alert: it didn’t). But the assembly line neurologist in the big machine of University of Michigan didn’t even glance at the history I typed up for him. He was highly dismissive, didn’t look me in the eye or listen, gave me one nerve block injection (which I wouldn’t know until later wasn’t at all effective) and told me to soak in epsom salt baths. While maybe that epsom salt advice could have been helpful for occasional comfort, or something, I summarily rejected it because I had wanted fantastic new ideas, fancy advice to go with the fancy diploma on his wall, rather than something that might as well have been an internet meme. A bit of respect would have been nice as well.
After attempting and giving up a gluten-free diet, trying two more Botox treatments, and taking FMLA to undergo a full hysterectomy, I finally had to resign from my position with the local Parks & Recreation department. I thought I would just be taking some time off, but I remained too ill to re-enter the workforce. [A quick note about the hysterectomy: I will undoubtedly at some point dive into the story of my peri-menopausal, post-pregnancy menstrual migraine nightmare and the controversial idea of hysterectomy to ease it, but not today.]
So I stayed home, spent time with my little daughters and my husband, and I slept, and I blogged, and I read and researched and joined online support groups and slept and read some more. I knew a lot about migraines, but what I hadn’t known was how to advocate for myself. I felt that if I took the reins of my illness, made sure I had the tools to treat it properly, I didn’t need to struggle so hard to get better. I would just be me, with migraine. I would embrace the headache. I would maintain. I would float.
Slowly, I began to think of my lifelong migraine disease as a river. Swiftly flowing, sometimes dangerous, certainly always changing. There were lazy quiet sections, but also rapids and waterfalls. And for the past several years, I had been trying to swim against the current. I was struggling, and fighting, and trying to get out of the river. But instead I was drowning.
So, just a couple of years ago now, I began to try to tread water, swim with the current, and float. Floating wasn’t always easy, and the transition was difficult. I managed to construct a raft, but rafts fall apart, and hit rocks. I lost a doctor in a painful way, and returned to my long term renowned neurologist / headache specialist, who insisted on changes I bravely attempted but which didn’t work. My family went through financial difficulties that were nearly insurmountable because my SSI payments were only an eighth of my former salary. My marriage and friendships went through painful adjustments.
But over time, my increased education on medicine and migraine, my online support, and my new determination to be my own advocate became less like a raft and more like a boat. Sure, the river was still my home, but I was no longer frantically kicking and screaming and swallowing water, or even hanging on for dear life. I could accept my illness, and maintain it as it was, and live to the best of my ability while continuing to educate myself and others. And once I made this big internal shift, I felt more at peace. No, I didn’t magically get better because I had stopped fighting. Far from it. But I did open myself up to a lot of new possibilities, and one of those possibilities was participating in a CGRP study. And three years later my life is markedly different. Still filled with pain, and fatigue, and lots of frustration at times (for example, I still haven’t figured out how to demand respect from a doctor who is loathe to give it). But I am far, far happier. I like myself, and my life, a lot better. Sometimes, I even realize the river isn’t all that bad. It eroded me, weathered me into the person I am: someone who is compassionate and perceptive; flexible and resilient.
I do want to make it clear that by accepting migraine as part of my life, I am not stating anything as simplistic as “I just developed a positive attitude and felt better!” Don’t you love those condescending recommendations? How about, “Just ignore your pain, and you won’t notice it as much!” I hate those platitudes as much as you do. No amount of positive thinking can diminish a neurological disease. While mindfulness can help, pretending your pain doesn’t exist won’t make it go away. And while it’s true there is no cure, there is always, always reason for hope. I didn’t stop looking for new treatments or stop seeking a better future. I didn’t even stop missing the days when I was only “light chronic” or the halcyon days when I had fewer than three migraines per week. But I did make peace with the role of illness in my life and embraced migraine as part of what makes me who I am.
My boat, as it floats down the river, has a soft comfy blanket and pillow, a heating pad, lots of bottled water and Cherry Coke, and a therapy dog. My boat’s medicine cabinet is well-stocked. My boat has a laptop and a flawless wireless router. What does your boat have? Or maybe it’s not even a boat, maybe it’s… a treehouse, high above the treacherous jungle? Feel free to tell me your experiences with fighting and accepting migraine disease in the comments.