My headache began last November, on an otherwise uninteresting day. I'd had a handful of migraines in previous years, but never like this. This one never went away. I've had some form of headache for the last 11 months, nearly a year of constant pain.
Most of the time, it's a sort of background headache that sits behind my right eye, poking out from the inside. Sometimes it's a lot worse, an explosive pain that envelopes my entire head and even my neck. There are other symptoms too: dizziness, nausea, light sensitivity and visual disturbances. And, the cherry on top seems to be the fact that even the slightest physical exertion makes it all worse.
To say that this has had a drastic effect on me over the past year is an understatement. As I sit in the emergency room, visit a new doctor, and go through any number of tests and treatment options, it's difficult not to feel like this headache of mine has, in many ways, taken over my life. Here I am, almost a year into this, and perhaps a little closer to finding a cause and treatment that might work, but still very much in the same place I started. That being said, I found ways to cope, to live, to soldier on. That is what is in my power to do.
As difficult as this kind of chronic pain can be, the hours of exhaustion that pile on, I've also learned several invaluable lessons on how to survive, to love, and even, sometimes, to thrive. Here are the five most important things I've picked up on my journey:
Know Your Limits
As anybody who has dealt with a long term health condition can attest to, the first thing you have to be willing to admit to yourself is that you have limitations. As I've spent months tracking my headache triggers, I've come to find there are things I simply cannot do anymore. Be on my feet for long periods of time without resting. Venture outside without sunglasses. Or even drink red wine.
But there's more to it than that. I've had to learn what areas in my life require cutting back. I can't be incredibly physically active, so I find small ways, a short walk or a session of yoga when I'm up to it, to get some exercise. Sleep has also become paramount and I have to plan my schedule accordingly.
Finally, I've learned that sometimes I have to say "no." There are certain activities and invitations I must turn down. Likewise, sometimes I have to back out of scheduled events or change my game plan, depending on how I feel at any given moment. I've had to learn that this is not only acceptable, but necessary. I have to put my body and my needs first, or else I'm the one who pays the price.
Enjoy the Simple Things
Just as I've learned to set limits for myself, I've also come to appreciate the simple pleasures of the life I'm living now. Any opportunity I have to get out of the house, to visit with friends and family, feels like a major gift.
While I haven't been able to enjoy the Colorado wild this summer and fall season, I've spent ample time working or even napping on my patio, just to get a little fresh air. I enjoy going out to lunch or dinner, taking short shopping excursions, or even the occasional social gathering. Sometimes, the simple act of being able to say "yes" to something is all I need to be reminded that there is still so much to be grateful for.
I've also found a great sense of pleasure in those moments when I can do the things I love, even if it's not as much as I used to. I try to capitalize on any time I feel up to writing or reading. I haven't had the focus or energy to do as much of either of these things as I am accustomed to, so I try to look at every book finished or every paragraph written as a small triumph. Word by word, I fight to retain the most important parts of myself.
Try Not to Dwell on the Negatives
It's easy in a situation like this to fall into a state of listlessness, even depression. With every new medication that doesn't work, every test that comes back without useful answers, every particularly high pain day, I wonder how I can keep on going. How all of this could be the rest of my life. It's a dark place to dwell, but it happens.
However, I've also come to understand that everything with pain and depression is a vicious cycle. The more I live in a negative space, the worse I feel. It's been difficult to admit that on top of everything else, I've also lost some feeling of control over my moods and my emotions. But I've found ways to start pulling myself out of this.
I try to keep myself in a place of hopefulness, willingness to try anything and everything that could make me better, and a belief that I can overcome this. I also have to allow myself those bad days, those moments of negativity. I can't always be strong and act like this is all okay. I'm allowed to express my anger toward my situation. It's good to cry sometimes.
Finally, I have to admit that my negative feelings are a product of my situation and I can't be ashamed or embarrassed. I have to ask for help. This has included confiding in people, finding ways to vent and release my frustrations, and even using medication to help battle some of the emotions most out of my control. This has put me back on the road to positive thinking.
Be Fair to Your Support System
While I've been blessed with a strong network of support, both friends and family who have come to aid with love and understanding, it's difficult not to get annoyed with the outsiders' perspective sometimes.
People don't always say the right things or know how to act or respond to me. Sometimes they get frustrated with my lack of energy or ability to do certain things. In a dark mood, I might think a person is not sympathetic or doesn't understand or is just plain tired of dealing with me and my issues. This can lead to tension and distance in the relationships that are most important.
But none of that is fair. No one who hasn't suffered from a yearlong headache, or other chronic pain issues, can know exactly what it's like. It's not reasonable for me to expect this of them. My community shows me love and support in a number of ways, and I can't do this without them.
I have also come to understand that it's difficult for the people who love me to see me in pain. Sometimes perceived standoffishness comes from a feeling of helplessness toward my situation, and this too is an act of love. In this light, I have to go easy on the people around me, just as I have to go easy on myself.
In all of this, self-love is perhaps the most important message of them all. I have to love myself, who I am right now, enough to do whatever I can to take care of myself, to look out for my own well-being. This can be a tall order on those days when I struggle to get out of bed and wonder if the person I've considered myself to be is still inside of me somewhere.
But I can't let any of this stop me from living a happy and healthy life -- full of possibility. I challenge myself every day to find new ways to fulfill sense of purpose. I will not let my current circumstances keep me from shining my light, living and loving, being who I want to be. This is how I will continue to love myself day in and day out. This is how I will continue to thrive.