Juggling migraine with life's milestones, unexpected challenges and crises.
My son was born with a cleft lip and palate which has led to multiple medical interventions ranging from minor procedures to major 7-hour long surgeries. Now 15 years old, he is facing the most extensive surgery of his life.
In recent years, migraines have brought me to my knees, forcing me to clear my plate of all nonessentials. From letting go of my professional life to losing many casual friendships – I have removed as many optional demanding aspects from my life as possible in order to be better able to respond to the daily severe pain that comes with chronic migraine.
Initially when I simplified my life, I assumed that the migraines would improve under the logic that less stress and demand would equal less pain. Unfortunately I soon learned that the daily pain was present regardless of my load and that, for me, chronic migraine requires full-time dedication and a commitment to self-care in order to best manage the condition. For me, this means constant adherence to a strict diet; vigilance to a regular sleep schedule; and pushing myself to take brisk walks as often as I can manage. It means remaining close enough to home that I can stop in my tracks, take medication, and lie down in the dark with an ice pack to rest. Most experienced migraineurs I know live similarly highly disciplined lives out of necessity. It takes a lot of time, focus and commitment, not to mention fortitude, to manage this condition.
There is no way to avoid all of life’s major demands, of course. Nor would one want to. Weddings, births, health challenges, deaths and unexpected crises require our presence. For people with migraine, the challenge of responding fully can be difficult. At times like these, we often must set aside the rigidity of our scheduled lives such that we can be with our loved ones when they need us, but doing so puts us at greater risk for a migraine attack.
My son’s surgeries have been among the most heart and gut wrenching experiences of my life. As a parent, my job is to protect my child; however, because medical intervention is required– I must face the powerlessness of placing his life in the hands of another. It is an enormously daunting experience. I desperately need to be there for my son during the most demanding challenge of his life, but I worry, “Will a migraine force me away from where I am needed most?”
Having lived with migraines for decades, I have juggled the condition with various life crises. For the most part I have noticed that my body seems incapable of multitasking intense stress coming from multiple sources. In the past I have observed my migraines taking a backseat to whatever the larger crisis is – almost as if the condition is holding its breath as I focus on what needs doing. And then when the primary crisis is over –I experience an enormous wave of pain – what my doctor calls a "let down migraine." It’s as if the exhalation from that held breath causes the pain to be heightened in intensity. I can be knocked down for days afterward, and it feels like I am being punished for the temporary reprieve.
There have of course been times that my migraines have not let up in crisis. I still regret not being able to be by my grandmother's bedside when she died because I was so ill with nausea and vomiting from a migraine.
As my son’s surgery is around the corner, I am moving mountains to prepare logistically on his behalf. I am doing everything I can to ensure that he will be supported by friends and family and that he’ll have all he needs to be comfortable during recovery. At the same time, I am realizing that I must do all I can to prepare myself as well. And while it is difficult to remember to take care of oneself during a time of crisis– it is likely one of the most important things I can do to at best prevent a migraine, or at worst prepare for one. I’ll seek sleep in the hospital when I can get it, remember to breathe deep, and bring trigger-free food with me to proactively increase my chances of being where I need and want to be.
It's an awful feeling not knowing how present I will be capable of being on such an incredibly important and demanding day. I am trying to give myself the same advice I give to my sons about their grades: “All you can do is the best you can do.” And I will do my best to be there, right by his side for this important milestone.
Have you missed important milestones due to a migraine? What strategies have you employed to navigate demanding times in your life while juggling a migraine?
Can you tell when a migraine attack is coming?