Confessions of a Functioning Migraineur

**I want to start off by saying that what I’m about to write is by no means made to undermine the seriousness of other chronic illness sufferers’ pain and suffering**

Those of you who are close to me know that I get headaches. I would like to think you know because when you ask me to go to a concert with you, I can’t because of a migraine or because I have to leave events early because of a migraine; not because I complain about it.

Granted, I probably do complain about it sometimes and very close friends and family have seen all the ugly that comes with this illness.

What I have is a primary headache syndrome called New Daily Persistent Headache (or NDPH). If you want to see a bit about the disorder that I was diagnosed with a little over a year ago, you can go HERE. This is also where I am citing my information from because even when you are writing a blog post about a personal matter, citing your sources is important (thanks, college).

I have been experiencing headaches for the past 9 years. They have morphed and changed over time and I have only had a diagnosis for 1 year of that time. NDPH is one of the most difficult migraine disorders to diagnose because it looks similar to some other conditions.

Diagnostic criteria:
  1. Headache for more than 3 months fulfilling criteria B–D
  2. Headache is daily and unremitting from onset or from less than 3 days from onset
  3. At least two of the following pain characteristics:
    1. bilateral location
    2. pressing/tightening (non-pulsating) quality
    3. mild or moderate intensity
    4. not aggravated by routine physical activity such as walking or climbing stairs
  4. Both of the following:
    1. no more than one of photophobia (increased sensitivity to sound), phonophobia (increased sensitivity to light), or mild nausea
    2. neither moderate or severe nausea nor vomiting
  5. Not attributed to another disorder

While I’m grateful to have a diagnosis, I’m bothered by the fact that the other conditions that mimic NDPH symptoms are not only treatable, but curable.In addition to being difficult to diagnose, NDPH is also very difficult to treat; it is extremely drug intolerant.

That being said, I spent the past 9 years of my life trying countless different types of drugs, alternative medicine treatments, lifestyle changes, diets, and so much more to alleviate the pain I was feeling every day. As you may guess, none of it worked.

Prior to my diagnosis, I endured MRIs, EKGs, an endoscopy, and so much blood work all with countless different physicians. 

It has been a struggle to say the least.

All the while, I have continued to remind myself that “this, too, shall pass.” 

~

Now, I am not fishing for pity; if there is anything I am seeking, it is understanding.

I want people to better understand my illness and, in turn, better understand me.

There is a whole community online for people with disorders like mine. When I first found this, I was thrilled; but when I started talking to these individuals and reading their stories, I found myself becoming extremely irritated with them.

In this online migraine support sphere, there is so much about the concept of “invisible illness” and how people don’t understand that we are in pain because it doesn’t show. All their jokes are about the drug cocktails they take everyday and about how much of a struggle it is to get out of bed.

I met one girl who was a few years older than me. She also had a migraine disorder of some sort. She had moved out at 18 to go to college. She didn’t even spend a full semester at her university before dropping out and moving back home with her parents. Of course, I don’t know here specific situation and the pain could have been truly unbearable. As a college student suffering from headaches, I understand how hard it is. But now, 5 years later, she still lives in her childhood bedroom. She only leaves her bed to use the restroom, eat, and go to doctors appointments. She watches movies, she colors, she chats on social networking. I get it that this is hard. I really do. But what pains me about this particular girl is that she never got back up to try again.

I was beginning to find that these people were constantly trying to tell the world–or are they just trying to reassure themselves–that they have it worse than everyone else.

While I can identify with some of those thoughts, I think what sets me apart is that I don’t let them consume me. These people are so negative because their disorder has won. All they can talk about, think about, post about is their migraines.

As a person who suffers from this every day, I won’t lie and say it’s easy to fight that pain constantly. This is a huge part of my life and it’s a huge part of the person I am. My illness is invisible; sometimes (although I’m stubborn and have been off for a few months now against doctors orders) I have a drug cocktail to take and it’s so absurd that it’s comical; sometimes, I am proud of myself for getting up. I feel the pain of these sufferers; I am one of these sufferers, but I make choices every day that hurt my head and I don’t regret them one bit because they’re worth it to me.

I make decisions to sign off of the social media sites that feed my want to sit in my suffering. I make decisions to go out and do things, even if I might get a headache later. I make decisions to go to class and get an education; I make decisions to work hard at everything I do.

Although I do have my days, and my weeks, sometimes even months,  I choose not to live my life in the comfort of my bed with my eyes locked on a computer screen. If I did that, I might have less migraine attacks, but I’d also have less stories to tell and memories to smile on.

I have already missed out on so much because of my headaches. If I have anything to do with it, I’m not going to miss out on any more. Sometimes, I am in such immense pain that leaving my bed is unthinkable. But no matter how bad it has gotten, it always gets better. “This, too, shall pass.”

Chronic migraine is horrible. It is the most miserable part of my life, but it has made me more kind, more compassionate, more understanding, and more considerate. It has filled me with gratitude and taught me to take risks and live for whatever I want to live for.

To those who can’t find a way to get out of bed because of their migraines, please take a moment to remember the things you love to do the most and try to find the strength to feed your soul with it. Because if you don’t, there won’t be anything left. And”If at first, you don’t succeed, try, try again.” Take care of your body, yes. But please, please, please, do not forget to take care of your mind.

There was a time that I forgot to do that. And I missed way too much of my life.

Still, I know that I will continue to get migraines. I know that I will battle with this for the rest of my life. I know that I will go through times where I don’t feel hopeful or motivated. I know that I will struggle; but I also know that my future is bright and NDPH is not blocking that view.

If friends are looking for ways to support me, I ask that when I am experiencing headache pain, just remind me that “this, too, shall pass.”