Waiting to Live
Last updated: November 2022
I’ve been doing it for years: canceling get-togethers with friends and family, missing important events, putting off work projects, avoiding going outside. Putting plans on hold and waiting for the pain to stop in order to participate in life. The problem with this approach is that if we chronic migraineurs wait for the pain to clear in order to live, we might be waiting forever.
Is it better to limit our lives?
Migraine can instill such fear in us. The pain related to migraine can be paralyzing and very often terrifying in its severity. From years of experience with the call-and-response dynamic of action followed by pain, or existing pain exacerbated by action, we eventually learn it’s better to stay quiet and limit our activities. So, we proceed with life carefully, tip-toeing along as if the world is made of eggshells built on a field of land mines.
What do we lose by shrinking our lives?
The fallout of this dynamic is the risk of shrinking the size of our lives, leaving us emotionally malnourished. Little to no time with family and friends means limited support, leading to a decrease in social or intellectual stimulation. Limited time outdoors can decrease our exposure to simple but important joys like breathing fresh air or appreciating nature. It is easy to lose our perspective on the world.
Can the pain be avoided?
Ironically, after we’ve done our best to avoid every possible trigger (diet, sounds, smells, lights, stress, etc.), we often find that the pain still arises. And regardless of our actions, many of us continue to experience some level of pain every single day.
Why am I afraid if the pain is inevitable?
I took a major step when I awoke to the realization that my pain is fairly constant, with numerous severe and debilitating spikes (sometimes caused by triggers within my control, such as lack of sleep, and sometimes not, such as hormones and weather). After all, if I’m already in pain on a consistent basis anyway, why do I continue to live in such fear of triggering pain? Why am I canceling and rescheduling plans? Why am I avoiding going outside? If I’m already in pain, what am I afraid of?
Of course, the obvious answer is that I’m afraid of more pain. That debilitating, terrifying, intense, and unmanageable kind of migraine pain.
What have I learned?
The truth is, I have lived with and managed that scary kind of migraine pain for forty years and have learned a lot in the process. The pain hasn’t killed me (although, at times, I thought it might). I have learned that I am actually quite strong and resilient, and that while migraines are tough, I am tougher.
So, with the knowledge that I have been slammed repeatedly by severe pain and gotten back up again, I have awakened to the fact that I if I keep living in fear, waiting to participate in life until my pain totally clears, I will never fully live.
How do I manage?
So, I am trying to get along with life, looking for ways I can spend time despite the pain (when that pain is manageable). I’m getting outside and doing nonstrenuous yard work, going for walks, and meeting my friends and family for a quiet tea. My husband and I have carved out a two-hour window every week to hang out together. If my pain is bearable, we might do some yard work together, or go see a movie. But if the pain is unmanageable, he will sit next to me in bed and read a book. The point is, we will have our time together regardless of my pain level.
I’m tired of waiting for the pain to pass in order to live. Despite having chronic migraine, I am going to seek ways to experience as much of the world as possible in order to get all I can out of life.
What about you?
Do you find that you are living in fear of triggering more pain? Have you found ways to experience the world despite the pain?
Have others downplayed your migraine pain?