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The Unpredictability of Life With Chronic Migraine

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June is Migraine and Headache Awareness Month (#MHAM). Migraine is a real neurological disorder that impacts approximately 12 percent of the population. I could spout off some more facts about migraine (I’ve learned a lot over the years), but instead I want to help people without migraine understand in the best way they can. I want to try to capture an aspect of living with chronic illness, and migraine in particular, that is harder to describe than the blinding pain, or the way the room spins — the unpredictability. I believe it’s a large a part of why this disease is so debilitating — it is considered by the World Health Organization to fall among the top 10 causes of years lost due to disability.

So, humor me.

Imagine you’re walking a tightrope. You’re doing so with the knowledge that your body is predisposed to make you fall. It’s happened before. You’ve worked for months or years to be able to walk a rope this high, with awesome views, but you know that at any moment you could fall. You could get seriously hurt and require a long recovery period. When you’re finally physically able, you’ll have to relearn how to walk the rope. You’ll start with a low rope, with no real view, and slowly work your way back up to the things you could once do. Until of course, you fall again.

This is what it’s like to live with migraine. It takes months or years of working on your health and trying different treatments to finally get to a place where you feel relatively better. You might change your diet, track your activities and sleep, and do trials of more medications and supplements than you can count. Eventually you’re able to stop just existing and live for a while. Even if it’s only some of the time, a few minutes or an hour or two here and there, you appreciate every second because you know it’s most likely only temporary. That’s because you know it only takes minutes to “fall” — for something to happen that that sends you back into the depths of your illness.

For me, this time it was rebound headaches from the pain medication that was prescribed after my hand surgery, but it could have been a million things. A meal out, a back-ordered medication, not doing my exercises, over-exerting myself, etc… I have no idea how long it will take me to get off of the couch, let alone to the point where I am able to live a little again. I’m really hoping it will be before my vacation next week, but that’s more or less laughable because the last time I “fell” it took me almost a year to get back up on the rope.

Regardless, eventually, I will rise. I will do it because it’s what people with migraine do. When we are doing better, we worry about when our next “fall” will happen, and what will cause it. When it happens, we feel guilty, but the truth is that no matter what we attribute it to, our illness caused it. It’s not our fault. The unpredictability of it makes it so much harder to live with. One day you’re walking the high wire with all the views, and the next you’ve fallen and are fighting like hell to get back to the point where you can start over. I’ve done it before and I’ll do it again, just like the rest of the approximately 12 percent of people worldwide who live with migraine and the 4 million people like me for whom it is chronic.

Follow this journey at Zebra Writes.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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Originally published: June 15, 2016
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