Chronic Migraine Will Not Defeat Me
My 11th grade year book is the perfect metaphor for life with chronic migraines. It is filled with photos I am not in from events and clubs I could not attend. The signature pages that should have held scribbled messages from my friends and classmates remain a pristine, glossy white. There are no inside jokes, invitations to hang out, or suggestions to “have a nice summer.” The book represents years of canceled plans, school absences, and growing isolation.
I was diagnosed with chronic migraines when I was eleven years old, though I likely suffered them for years before that. My family took road trips every summer and I invariably spent a day or two being ill. My mother often jokes that I have thrown up in every state west of the Mississippi. A large portion of my childhood and adolescence was spent lying in my darkened bedroom, secluded away from any bright lights, loud noises, and life in general. I began to struggle to keep up with my schoolwork in junior high. In fact, despite my earning straight A's, my math teacher lobbied to hold me back from graduation due to all my absences.
Things only got worse in high school and my grades suffered for it. For two and a half years I managed to balance migraine days with schoolwork and a social life. I sang in the school choir. I was co-captain of the color guard. I had several close friends that I spent time with, both at school and on weekends. It was difficult, but I managed to stay afloat.
That didn't last. In 11th grade, the delicate house of cards began to topple. My migraines increased in frequency and intensity. I missed an average of eight days of school each month. My neurologist prescribed a rather high dose of Topamax in an attempt to prevent them. It had no effect on the pain, but it did live up to it's nickname of “dope-amax.” It slowed my thought process to a crawl and I became clumsy and ditsy. The side effects were so intrusive that my school counselor encouraged me to accept disability accommodations. Up until that point I had fought the idea of getting special attention. I felt like a fraud compared to all those with “real” disabilities. After all, migraines were “only headaches.”
By second semester the migraines were so pervasive and debilitating that I had to be home-schooled. My friends were supportive but it wasn't the same. Without the daily interactions and shared struggles of our classes, we began to drift apart. I honestly don't remember much of that time. The days blurred together in a haze of pain and loneliness. My empty yearbook is a concrete reminder of those miserable months.
I was able to return to school for senior year. The migraines, though less frequent, still plagued me once a month. I managed to get my first, and only, job working in the snack shack at our local community college. It was a good experience but I was fired after only a few months due to taking too many sick days. Yet I kept going. With hard work and the support of my amazing family and friends, I managed to graduate with my class. I even took a celebratory trip to Australasia and the South Pacific with two of my best friends. Though I spent a few days holed up in an Australian hotel riding out a migraine, I spent weeks snorkeling in clear Fijian waters, bungee jumping in the green hills of New Zealand, and taking in new experiences at every turn.
Life went on and with the help of accommodations from the disabled students association I managed to graduate from City College, and then University. I am very proud of my degrees and all the work it took to earn them. Unfortunately, the migraines didn't stop after graduation. If anything, they became more frequent. I am now down with a migraine far more often than I am up. I spend four to five days of every week in a haze of pain, depression, and fatigue. I have tried every medication and therapy my neurologists could think of, including Botox, triptans, and antidepressants. I even tried acupuncture and a strict gluten and dairy free diet for a year. Nothing helped. At 33 years old I haven't had a job since that ill-fated attempt in high school, I am not in a relationship, and I am not financially independent enough to have my own place. Most things that people typically achieve with adulthood just haven't happened for me. Yet.
My story is not all doom and gloom. A few good friends remain beside me, despite frequently canceled plans and ignored text messages. I know that if I'm feeling down I can count on them for an encouraging word and a smile. I am closer to my family than most adults can be. My parents are my biggest supporters, often reworking their schedules to drive me to appointments and run errands for me when I am debilitated with pain. Because I still live at home I have been able to help my parents raise my nephew. I have become very close to him and am proud of the way he has grown and matured into a smart, funny, and caring young man. Even in my darkest hours, plagued with migraines and the accompanying depression, I never lack for love and support. I may not have achieved the successful life that many dream of, but I am still proud of what I have.
It can be difficult to see the positives while the negatives pulse so loudly in my brain. There are days when I feel like a failure, days when I cannot see a future without pain. But there are also days filled with laughter, friendship, and so much love it warms my toes. I'm sharing my story, baring my ugly scars, in the hopes that it reaches other migraine sufferers. You may feel lonely and isolated, like a yearbook without signatures, but you are not alone. You may feel depressed and helpless but you are a warrior. Every day you battle the pain and demons in your own skull, and you keep going. You don't give up trying new medications, new diets, and exercises. Others may not understand how debilitating a migraine can be, they may tell you it is “just a headache” and that you should push through it. Don't take those words to heart. Do not let others invalidate your struggle and make you feel weak. You are stronger than they know, strong enough to keep plugging along even when there is no end in sight. I hope each and every one of us eventually finds something to relieve our pain. But until then, lean on your support system and ask for help when you need it. Keep fighting and don't let the migraine win.
When it comes to planning vacations or other events where travel is required, how much does migraine factor into your decision-making?