You'll Get Better Soon... The Story of My Chronic Migraine
I never knew what I wanted to be when I grew up. After high school I spent my early twenties flitting from option to option: marine biologist, marine ecologist, writer, English teacher. I kept changing my mind, never satisfied.
My life changed at 25, when I received a head injury that resulted in chronic migraine.
It’s almost six years later, and all I want to be when I grow up is healthy and migraine free.
As a chronic migraineur, I know how unlikely it is that I will ever be migraine free again, but God how I miss pain free days.
Even after all these years, I still get people asking me, “You’re still sick?” or telling me, “You’ll get better soon”.
The latter is perhaps the worst thing you can say to me, because I’ve waited six years to get better, and yet I haven’t. There is no law in this universe stating that I have to get better. I know that my migraines can fluctuate and there will be periods where I will be better.
There will also be periods where I will be worse, like the 27 days I spent in the hospital, with my neurologist, who is a migraine specialist, pulling every trick out of the bag to try and break my behemoth of a migraine. It took me months to recover after that hospital visit.
If you’ve ever spent a month in the hospital, you get it. If you haven’t, then you don’t. And you have no idea the harm you’re causing with words such as “it will get better”.
Thanks to my neurologist, I am living a much better life than I was six years ago. I still am not able to function on days when I have migraines due to the pain, the vertigo, the vomiting, and on really bad migraine days I get a type of migraine known as Alice in Wonderland Syndrome. Over half the days in a month are given over to migraine.
But the days that aren’t? Now I can see my baby niece and play with her. I can get a cup of coffee with a friend and catch up with them. I’ve learned to appreciate the little things in life and not to hold my breath waiting for the bigger things. I am a happier person because of this.
It’s frustrating, at times, because people see me out and assume I’m better. They don’t realize that it’s the first time I’ve left my house in over a week because the other days were spent hiding in a dark and quiet room, wishing the pain would just end. They have no idea how hard you fight for your good days.
How much strength it takes to be a person with an invisible illness.
How much energy it takes out of you just to do the small things that they take for granted. And that doing too many of those small things can lead into another migraine.
They have no idea how much the isolation of this disease eats away at your soul. How you lose all the people you thought were your friends because you can’t do the things that you used to, or you’re not fun anymore.
They have no idea how much you break your mother’s heart, every time she has to sit with you in the hospital and watch you suffer, knowing there is nothing she can do, and wondering why this has to happen to her child. How it breaks your heart in return. Nobody wants to be this kind of a burden. We are the chronically ill patient, we suffer but we don’t die.
I wish I could tell you that it gets better.
In a way, it does. You get better doctors on your side, you figure out which meds work for you and which don’t, you find out who your true friends are.
But every day is still a struggle. I fight for my health.
I don’t know if I will ever grow up to be a healthy, migraine free person. But I hope I will.
How much has your migraine disease changed or evolved over time?