I've recently hit the two-year mark on my New Daily Persistent Headache. I woke up one morning in October of 2013 with a bad headache that just never went away. It sits behind my right eye, constantly nagging me. It flares up, often several times a day, and I can't keep my eyes open, let alone stay on my feet for any length of time. I've seen four neurologists, made several trips to the ER, and have done just about every treatment and test you can think of. And I'm no closer to finding a solution for this constant pain.
I could tell you about how challenging this has made everyday life -- how blue I feel sometimes, when I have to measure what I'd like to accomplish on a daily basis against what I actually have the energy to do. I could tell you about the loneliness and isolation. Or, on a happier note, how much the support of family and friends has meant to me through all of this. But there's something else on my mind these days: my weight.
I don't necessarily want to talk about this, but it's part of my headache story nonetheless, and I can't ignore it. Now this is not a struggle. I've struggled with my weight and how my weight has affected my overall self-image since childhood. I've spent my young life residing in various places on the scale. I've suffered bullying, chastisement, and rejection that has left deep scars in my adult life. Scars that have made it difficult at times to put myself out there, to feel as though I am worthy of being loved. This is something I feel I must conquer anew each day. And, I have lost weight, not drastically, but enough to feel as though I am putting my health first. And, I've also maintained a steady weight for long periods of time and worked hard to find ways to accept myself, to be at peace with the body I have and what it continues to provide me.
But things have changed with the onset of my headache disease. I've gained probably 30 pounds since this all started two years ago. It's stress weight, all bunched in my midsection like a flabby albatross I have to carry. Some of it is most certainly due to the physical stress my body has been under. I'm in constant pain, constantly exhausted. Beyond that, I've tried just about every treatment in the book, including some medicines with a whole slew of gnarly side effects. Of course, some of my weight gain has been emotional -- I have a bad habit of craving sweet beverages when I'm in pain, like some ridiculous sort of Starbucks liquid bandaid. Some of it has just been my inability to be active at all. Physical activity of any kind makes my headache exponentially worse, and I always have a headache. It's not hard to do the math on that one.
None of this is the end of the world. I know that. I'm not even the heaviest I've ever been. And I could lose a little weight as I work to repair some of my bad habits, push myself to find ways to be more active, focus more holistically on my health. This is not hopeless. And yet, overall, this is the worst I've ever felt about myself. This weight is a constant reminder of how my headache disease has changed my life. I am not in control of so many things that affect my body, my mind, my spirit. I can't physically be the person I want to be. And that's been a hard pill to swallow.
I want to change it or I want to accept it, or a little of both. But it's hard, so very hard. On days when I can't even get out of bed because I'm in so much pain, it feels impossible. For instance, I dream of being a real explorer. One of those bona fide Colorado girls with their North Face or Patagonia, taking photos with their backs away from the camera, looking out over some scenic expanse. I mean, 53 fourteeners in this state and I haven't climbed a single one. I want to take full advantage of this beautiful place where I live, appreciate all the resources this planet has to offer.
And then I go to the grocery store and have to come home and take a nap because the exertion is more than I can handle, and I die a little inside. I can't be that woman. At least right now. If I go outside without sunglasses, I shrivel in the light like a wilted plant.
So I suppose I'll have to settle with the idea that I can work up to these things one day, as circumstances change. I can sit out on my deck and enjoy the sunshine. If I'm feeling up to it, maybe read a book. I can start working harder to put better things into my body, fight the urge to let my general feelings of ickiness push me towards instant gratification over better health and nutrients.
And I suppose I must admit to myself that so much of who and what I am at this moment is a product of my headache. I have to cut myself some slack. I can focus on not feeling like my best physical self or I can focus on seeking answers, looking for new ways to change my situation, to not let the headache win. This feels like the battle I should be fighting. A battle I may even, at some point, no matter how hard it is to imagine, win.
(Photos of the author by KColby Photography)