4 Things Intractable Migraine Has Taught Me
I have had chronic migraine for twelve years. Most of those years were spent being intractable. Intractable migraine, or status migrainosus, is a debilitating migraine that has lasted for more than 72 hours (three days). Being in pain almost every single day for so many years is emotionally and physically draining.
My normal includes some level of discomfort, disability and impairment. Life is completely different for me and how I approach it differs depending on how I feel from day to day. Through navigating my new normal I have learned several life-changing lessons that have shifted how I see myself.
I am not my migraine
For many, many years I identified myself through the eyes of my disease. I felt less than, weak, invalidated and unimportant all of the time. My pain and associated symptoms dictated what I saw myself as, which was someone who was incapable of being or doing much of anything. Migraine has a way of making you interpret the disease as a manifestation of your personality. The external and internal stigma surrounding migraine also played a role in how I saw myself.
It wasn’t until I had gone through an extremely dark and challenging time that I began to realize that who I am was separate and apart from my disease. My life is not a reflection of having migraine. I just happened to be born with a migraine brain. The core of who I am has never changed or been diminished. I can achieve whatever I choose to within my new normal. I have migraine. It doesn’t have me. Changing my perspective on how I see myself and migraine has made coping with it that much easier.
It’s okay not being okay
As a wife and a mother living with chronic migraine, I always pushed myself beyond my limits to prove that I am just as present and capable as any normal, healthy wife and mother. Guilt would eat me up alive whenever I spent days in bed due to severe attacks. Trips to urgent care or spending days in the hospital for infusions made me feel like a burden. I felt awful most of the time!
So, whenever I could I would push through the pain just to show up for my husband and kids because so much time was lost to migraine. I would suffer through preparing meals, school activities, field trips, girl scout meetings, basketball games and musical concerts because that’s what any mom would do. My husband would always tell me that it’s okay not being able to do everything. That the kids are happy, healthy and loved and he is perfectly happy with the woman I am, migraine and all. Eventually, everything he told me started to sink in and I realized that if he is okay with me not being okay then so should I. The world is not going to fall apart because I am sick and most importantly, my family will never think less of me because of it.
Cherish the small things
Having chronic intractable migraine means spending a lot of time confined to my house. I don’t have much of a social life and none of my extended family live near me. So it’s just the five of us – me, my husband and three children. They have only known me to have migraine and have seen it take over my life. My new normal had to become theirs as well. So we all adjusted. Thankfully, my husband has always been the kind of person who liked to do something special because it’s Tuesday. He never waits for holidays or special occasions to celebrate us.
And since so much of these past twelve years have been spent at home, we made the best of it. Every week we have family night where we watch a movie together. We’ll have game nights and impromptu slumber parties in the family room. My sons will help me cook dinner and we will be laughing the entire time. Or the kids will just lay in bed with me and snuggle on my lap when I’m feeling sick (mind you they are now 20, 18 and 17 and still do these things!). I love those moments and I wouldn’t have had them without intractable migraine.
Be your own advocate
For a long time I would just go along with whatever the doctor told me and not question anything. Even if something didn’t sit right with me or I wasn’t sure about a treatment, I kept quiet. In my mind, the doctor knew more and what was best. As migraine started to become more aggressive and difficult to treat I had to begin listening to my body. That also meant learning how to vocalize what I thought my treatment plan should look like.
Oftentimes, we forget that the relationship we have with our health care professional is a partnership. We have to work together in order to achieve the same goal, which is having less pain and a better quality of life. What I embraced is my role in my health and how I wanted to show up for myself. It can be scary and intimidating, but it is more powerful, validating and rewarding being the leader of my own cause.
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