We can all agree that living with chronic migraines can make carrying out the activities of daily living incredibly challenging.
When attacks are unpredictable and frequent, its hard to plan a week or even a day. Even though we we want to do all the things, there’s a distinct possibility that, on any given day, our bodies are going to say no. Living with a chronic illness mean we learn to listen to our bodies very carefully. We need to hear the warning signs when our bodies are whispering “no” to avoid waiting until the whisper has turned into a scream. Sadly this type of lifestyle often leads to last minute cancellations, the inability to even make plans, and worse, overdoing it when we finally do feel well enough to enjoy an active day.
Given this set of circumstances, is it really possible foe a person with chronic migraines to plan for special events and activities? This is something that’s been on my mind for weeks now as we settle into the summer season. The season of camping, reunions, roadtrips, basically lots of extra fun with lots of extra emotional strings attached. Can we really be at that campsite, or barbecue, or beach trip on that specific date like we said we would? Will my friends or relatives be mad if I can’t make it? Will they stop inviting me because they assume I’m not able to do the big ticket things like theme parks and concerts, etc? It’s a hard situation for anyone with migraines. And if you have kids, its even more complicated. For several reasons.
Family guilt/FOMO aside, the first thing that I’m worried about is not living up. As a toddler mom, we’re starting to enter the age of constant activity. No longer babies who sleep all the time and stay where you put them, toddlers are energetic and. There’s a slew of classes, lessons, swims, hikes, etc geared toward them. I will confess, I spend a fair amount of time on facebook. I’m not glued to my screen, but let’s just say I’ve noticed an increase in the “fun quotient” now that summer is here. Lots of my friends are doing beach trips, road trips, camping, eventing, etc with their kids. Smiling pictures of kids eating popsicles, splashing around at a pool, on tops of mountains. All of these things make me wonder if I’m providing enough fun times for my child. I’m relatively lucky in that most days I can function, even if I’m having a bad migraine.
So while I am almost always present, I often wonder, how do I compare with the other moms, the “normal” moms who feel well most of the time? How do I compare to a mom who gets up in the morning and hikes a mountain with a kid strapped to her back? I want to do big adventures, and we do fun stuff, but I have to pace myself and my kid spends a lot of days spent in the back yard just watering the grass and sliding down the slide. Because sometimes that’s what I can manage.
And my online persona isn’t the only aspect of my life that I worry about. I worry about my child, and her experiences in life. Parents with chronic illness don’t only have to manage our own social schedule, we have a little people to manage too. The last thing we want is for our health (or lack thereof) to limit our kids in any way. Forget bragging online and posting amazing pictures- more than anything we want our kids to feel normal. To have as much fun as the other kids, not to miss out because mom or dad needs a “home day.” Or that we’re too busy catching up on basic life maintenance like grocery shopping or housework to add in all the extra summer fun. Parents with chronic migraine have to prioritize tasks and activities very carefully because, frankly, there’s so much to do that it’s impossible to accomplish it all. and if you try too hard, chances are our bodies will become very unhappy and we risk being “down” for several days. Coordinating daily life, special occasions, going out of town, the details alone are enough to be incredibly daunting. But the emotional aspect of childhood and summer can add another layer of insecurity and guilt.
Back to the original question- can chronic migraine patients really expect to make and keep summer plans? I say for many of us-yes. It requires a lot of planning, and expectation-lowering. I’ve had to realize that I don’t have to wait for that perfect good day to come around. If I’m prepared, I can make it in most situations as long as I’m well equipped. This summer, I’ve taken the plunge and made some fairly ambitious plans for our family. Including a few camping trips (which are scary because alone in the woods +migraine is NO fun.) And I’m struck by how far I’ve come in my migraine journey. At this time last year, I was suffering from chronic daily migraines but I was undiagnosed and ibuprofen was my only rescue (hint- it didn’t work very well.) I was in level 5-8 pain daily and had no answers. One year, many med trials, several doctors, and a few ER visits later, my condition is being managed by a competent specialist, and my pain is much more controlled. I still have bad days, and bad stretches of days. But my biggest challenge now is juggling all the components of my treatment plan (meds, appointments, diet, exercise, rest) with the demand of parenting and work. Inevitably something falls off the radar. And now that it’s summer I’m being undeniably reminded that this is my task- to attempt to strive for health and wellness alongside my daughter’s childhood. My work right now is finding a way to finding good blend of work and self care with a dose of fun and adventure.