Managing Migraine: A Marathon, Not a Sprint
Honestly, I’ve never been a huge fan of exercise, but I kinda understand the bare minimum. That exercise in some form is good for general health, and more importantly that it can help with pain management. I also understand that there is a huge difference between a sprint and a marathon. Just the word “marathon” makes me want to run for the hills (no pun intended). The reality is that learning to live with and manage migraine is exactly that. We want it to be a sprint, to get it fixed, organized, somehow controlled, and to be able to move on to something else. You would think that a lifetime of migraine would make it obvious that this is rarely the case, but it finally smacked me in the face with the emergence of the new CGRP inhibitors in 2018.
I still remember the incredible excitement as so many of us eagerly awaited our first dose of this new class of medications. Was it possible that this would finally be the miracle we’d waited so long for? What was the chance of getting our lives back? Who would pull that lucky ticket as a super responder and was that even possible? Such thoughts were almost too wonderful to contemplate. Theoretically, we knew that not all of us would respond, but somehow it was easier to believe in the impossible than allow ourselves to consider the failure of yet another treatment. Rediscovering hope after decades with no new migraine medications was hard to resist. Who didn’t hope for the best and long for that much-awaited miracle? Admittedly, I eagerly joined those ranks and refused to allow any thoughts of possible failure to surface.
Rollercoaster of emotions
On the face of it, hope and excitement are good things. After all, haven’t we all had more than our fair share of setbacks? For so many of us, the challenge turned out to be figuring out how to respond when that miracle remained elusive. Or even worse, when there was a negative reaction to the new treatments. To me, it seemed like an endless rollercoaster of emotions: hope, frustration, excitement, discouragement, renewed hope, exhaustion, determination, failure. Yes, there’s that depressing word again – failure! Not me failing the new medications, but somehow them failing me. It was amazing to hear from people who responded well, but for those who did not, trying to figure out a path forward was not always so simple.
Hope over fear
Admittedly, it’s tempting to give up. After all, which marathon doesn’t have those runners who simply feel too exhausted to keep on going? Then there’s fear, and that’s an easy one to give in to as well. Fear of an unknown future, lack of answers, and dead ends. Fear of medication side effects, of society not understanding, of inaccessible treatments, and just ongoing challenge of finding a doctor who is educated in the disease. It often seems simpler just to hole up in our rooms and lose hope. Elie Wiesel once said, “Just as man cannot live without dreams, he cannot live without hope.” And Fyodor Dostoevsky said, “To live without hope is to cease to live.”
Despite the dark times when I have no choice but to curl up in a ball in my bed, or those days when just making it from bed to couch for a couple of hours is a huge achievement, I CHOOSE to hope. I choose to see this as the longest marathon of my life, and one that I refuse to give up on. For me, that means taking breaks and being kind to myself even when the guilt of things not done seems overwhelming. It means connecting with others who really do “get it” and sharing the pain and discouragement. It means picking myself up time and time again, finding the courage to try something new, advocating for myself with doctors, and setting healthy boundaries in my life. This is my marathon – it’s long, exhausting, and full of ups and downs – but it’s one that I am learning to run.
Do you feel as though living with migraine is a marathon for you? How do you manage to keep on going? Where do you find hope?
How much has your migraine disease changed or evolved over time?