Whenever someone says “I don’t know how you do it,” my head is full of things I want to say but don’t. In my fantasies, I imagine a very one-sided conversation that goes something like this…
You always say that. I usually respond by shrugging it off and changing the subject when what I really want to do is shake you hard and scream,
“IT’S NOT LIKE I HAVE A FREAKING CHOICE, NOW, DO I?!?!”
When I talk about living with migraine and cluster headaches, there is a disconnection between the words I use to describe my experience (very accurate) and the emotional impact of really living it (disconnected). I tell my story like an AP reporter – all facts, no emotion.
It’s quite another to tell the whole truth, “In the middle of my worst pain, no one sticks around. There is nothing anyone can do to stop the searing fire. So I pace the floor screaming obscenities in my head while burning tears stream down my face. Unable to quench the flame, everyone flees from the beast inside my brain. It’s the isolation that drops me to my knees, sobbing for a quick end. The worst part is feeling so abandoned.”
I don’t ever tell you the raw, unfiltered truth. Yet you still insist, “I really don’t know how you do it.”
Do what? Breathe? Crawl out of bed each day? What else would you have me do? I’ve lived this way for as long as I can remember. I wouldn’t know what to do with this imaginary thing called “being healthy.” How do healthy people accomplish so little when they don’t have this kind of pain holding them back? What’s your excuse?
Even now I feel the pain. The muscles of my back are burning in protest. My neck is stiff and sore. There is a dull ache that is resting just above my right brow, threatening to explode. This is just part of my experience. If I stopped every time my body rebelled, I would never get out of bed. Most of the time, getting out of bed is exactly what makes it better. I must push through the intense pain if I am to find that tolerable ache with which I can function.
“Can’t you take anything for the pain?” you plead.
Well, sure, if I want to be a zombie for the rest of the day. I suppose I could, but why set myself up for even greater pain down the road? I can and do take pain medicines as prescribed when other measures fail to keep the pain signals down to a dull roar. I’m not a martyr, but I’m not a coward either. I know that the life I’ve been given requires work that most would not do. Of course you don’t know how I do it. You’ve never experienced a life like mine.
…and I don’t even tell you half of it.
It’s your turn!
When you talk about migraine, is there one thing people always say? Do you hold back? What do you dream of saying instead?