For the Flare-Ups That Feel Life-Altering

I’m sitting in bed after a week with minimal sleep, a four-day migraine, and a tsunami of emotions. I postponed an essay, fell back on readings, and cried more than I slept. I was incapable of giving myself a shot because the pain was too bad. I felt like a zombie just trying to make it to my classes.

I’m tired. There’s no other way to put it. I’m exhausted. I’m tired of pretending that I’m OK, and I’m tired of feeling surprised when I get a bad flare.

Why should I be surprised? This is my life. It’s not a glamorous or happy thought at all. My life is made up of moments where I am preparing for the worst. This week, after getting an abortive shot, I was talking to my dad. I actually made a plan to check myself in for a three-day acute treatment this weekend if the shot didn’t break my four-day-long migraine. There’s nothing that hurts more after being relatively stable for months than being in so much pain you can barely function.

The worst part is that I actually second guessed myself this week. I worried about my life, and everything I’ve worked for in the past year and a half, being taken from me because I wouldn’t be able to function. I worried about what will happen when I am living alone after college, when I can’t give myself a shot, but can’t function enough to find a way to get to a hospital or my doctor’s office. What about all the times when I struggle just to walk back to my room? What about when I tell my friends I’m fine, I’m alive, but really I can barely make it out of bed, let alone my room? How do I mentally prepare myself for a reality I’ve already lived through?

I was one of those migraine cases where doctors turned me away because they didn’t know how to help me. I lost all sense of stability and structure in my life, and my entire world went from anything my mind could imagine to the four walls of my house. The things I loved, playing violin and soccer, became just a memory because I didn’t have enough physical strength to even walk downstairs. I was basically on bedrest at 17 years old. I wasn’t sure if I was going to graduate high school with my friends, let alone go to college.

I know I can, because I’m here. But sometimes, it’s not the fact that I have been able to get where I am, it’s the fact that in a second, I could be lying in bed sleeping for 15 hours a day with absolutely no memory for months until my brain recovers from the trauma that is getting seven migraines a week for months at a time. It is trauma, because it takes my body days, if not months, to recover from these flare-ups. It’s not just a headache, but God do I wish it were.

Sometimes, I wonder how my life would be if I wasn’t sick, because sometimes I forget. Every once in a while, I forget I am a chronically ill person and feel normal. It’s a blissful but fleeting moment. How do I move on with my life when I’m constantly reminded of everything I lose if my illness flares up and spirals out of control?

I don’t know the answer to the question, but I wish I did. I know I’m a strong person, because I have lived through some of the worst parts of my life already. I know if I lived my life expecting the worst, I really wouldn’t be able to function, because I would never see any reason to. I would lose all hope.

Hope isn’t what gets me through my day, though. I get through the day because of my own strength, and because of the strength of my friends, my family and the online community of spoonies who, like me, have started writing and blogging about our experiences. I get hope from all of you because your support of me and my blog gives me a reason to keep doing what I’m doing. I am the happiest I’ve been in a long time. I’m also exhausted. The two are not mutually exclusive, and neither are my health and my life.

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