How to Thrive, Not Just Survive, With Chronic Migraine
Over the last five-and-a-half years, I got married, had two beautiful children, and went to hell and back surviving chronic migraine. Although many women with migraine find relief during pregnancy and breastfeeding, I experienced the opposite reaction. Hormone fluctuations, stress, sleepless nights with newborns, and medication overuse headaches all played a role in transforming my episodic migraine into chronic. I struggled with severe head pain, nausea, vomiting, depression and hopelessness during what was supposed to be a joyful and exciting time of motherhood.
Surviving Chronic Migraine
As I was being sucked deeper into this illness, my pain days gradually increased to where I was experiencing pain 24/7. I was homebound, unable to work even part-time, and failing at being the type of mother I wanted to be. Depression and anxiety enveloped me. Meanwhile my babies, who were only 19 months apart, were growing and I had to meet their physical and emotional needs. Each day was a challenge to be able to take care of myself, let alone my family. There I was, barely surviving. I have previously written my story about how I managed to survive chronic migraine. Finding the right treatment plan took patience and time until I found what worked for me.
Related: 5 Simple, Essential Tips to Reduce Migraine Anxiety
Being Afraid to Live My Life
Although I was starting to feel better, I still avoided doing a lot of things, such as eating at restaurants and attending crowded events or parties, in fear that the triggers I’d likely encounter would be detrimental to my vulnerable migraine brain. I felt safe to stay in my comfort zone and continued to isolate myself. I was enjoying more pain-free days, but there was definitely more progress to be made.
Living My Life
My life now looks very different from what it looked like when I was plagued by chronic migraine. I still have migraine and yet I am participating in life again. I am working part-time as a lawyer while my kids are in preschool. While our chaotic mornings are not migraine friendly, as we battle the tough tasks between waking up and getting out the door, we are able to get it done and to preschool on time, usually. We volunteer in the community. I am part of a book club and my kids have play dates with lots of loud and joyful children. On the weekends my husband and I are busy working on our new home while spending time as a family.
Related: The Funny Little Phrase I Use to Describe the Days When Everything Hurts
Watching the Migraine World Summit
How did I get here? How did I go from surviving to what I consider thriving? I never pondered this question until I watched the live opening night of the Migraine World Summit 2019 when Dawn Buse, Ph.D. gave her speech. Dr. Buse is a licensed clinical psychologist and a Professor in the Department of Neurology of Albert Einstein College of Medicine of Yeshiva University. I was in awe when she called us all “survivors” who are living with a “chronic, painful and unpredictable disease that strikes without warning.” She discussed seven ways we can feel stronger, empowered, and healthy about living our best life with migraine. As I listened to her talk, I thought back about my migraine journey. Although figuring out my treatment plan was key to learning to manage migraine, learning to thrive with migraine required a different kind of work.
Here are Dr. Buse’s seven strategies and how I have implemented them to thrive with migraine. I hope you can too.
Related: Golfer Jennifer Kupcho Wins Historical Tournament With Blurred Vision From Migraine
1. Be kind, gentle and patient with yourself.
Many of us struggle to treat ourselves kindly. We are often our own harshest critics. Dr. Buse’s advice is to talk to ourselves the way we would talk to someone else with a chronic painful disease.
We often get impatient with ourselves and with others when things do not go our way. Practicing patience is another way to treat ourselves with kindness. A great way to keep stress levels down when something or someone does not live up to our expectations is by recognizing our own impatience, and then to either come up with a solution or simply letting it go.
I have high expectations of myself, so naturally my inner voice can get pretty harsh. When it gets negative, I slow down and ask “What would I tell a friend in the same position?” And then I say that to myself. With time, I noticed that “a friend” was speaking up more and more, while my often judgmental inner voice was no longer so loud.
If your inner voice is quick to pass judgment, take a moment and tell yourself what you would to a dear friend. I bet you would be friendly, caring, and considerate. And that is exactly what your migraine brain needs.
2. Find your tribe.
Living with chronic migraine can be very lonely. In addition to pain, fatigue and dizziness, we often feel misunderstood which leads us to withdraw from activities and people that used to be important to our lives. Many of us must stop working and that further shrinks our social circle. Moreover, motherhood can be very lonely. A recent U.K. survey found that 90 percent of mothers feel lonely since having children and 54 percent felt “friendless” after giving birth.
So it is not surprising that mothers with chronic migraine would be at a higher risk of loneliness. Loneliness has a catastrophic effect on our psychological and physical health. It becomes a vicious cycle where our chronic illness and mental health feed off each other.
After years of struggling with chronic migraine as a new mother, I turned to Facebook and was genuinely surprised that migraine support groups exist. I found Migraine Strong, a migraine wellness group that supported me on my journey to take control of migraine. I have had the privilege to make friends with people from this group whom I have met in person.
In the age of technology, online support groups are on the rise. Sharing your experiences in a group full of people who have the same illness can help by showing you that you are not alone in your struggles. It can even help you make friendships with people who have so much in common with you.
I also joined the MOMs Club in my town. Our calendar quickly filled up with play dates, service projects and craft activities. I joined a book club, which meant I started reading more. Most importantly I developed beautiful friendships with beautiful women. They may not know about migraine, but they are all fighting their own battles. And at the end of the day, parenting small humans is what we have in common.
3. Ask for and accept help.
Asking for help is not a sign of weakness. Nobody can do it all. We all need help sometimes and we should be willing to help others. Dr. Buse reminded us that often our families and friends feel just as helpless and hopeless as we do and giving them a way to feel useful helps everyone. It may mean a lot to someone to be able to help, so if you need it, don’t deny them this opportunity.
I often asked my in-laws to help babysit my kids when I needed to go to doctor appointments, the office or run errands.
Identify what you need the most help with and find the best person for the job. Trust that your friends or loved ones would be happy to help you, because if the roles were reversed, you know you would do the same for them.
4. Volunteer and serve others.
“Being a patient is a very disempowered way to feel,” Dr. Buse said during her talk. If we take the focus off ourselves and focus on helping others, we empower ourselves.
I became an admin of the Migraine Strong Facebook group by joining four other amazing women, who became my close friends, in helping our members take control of migraine. There is nothing more empowering than helping people empower themselves.
Through the MOMs Club, I have participated in numerous service projects and fundraisers. Last Halloween, the children and even parents dressed up in costumes and went trick or treating at a senior residence home. Oh, the smiles on the residents’ faces! This year we have done a fundraiser to benefit foster children and it has been amazing to share this experience with my own children.
Find something you care about and inquire about a volunteer position. Volunteer at a pet shelter, the library or an old bookstore. Use your pain to help others.
5. Accept and let go of what you can’t control.
We have no control over many of the things that happen in our lives. However, we do have control over how we react to them. We can choose to agonize over what happens and let that new stress further complicate our migraine or we can channel our attention to things that will calm us down and restore our sense of control.
When we are struggling with chronic migraine, the world may feel like it’s quickly spinning out of control. Mindfulness is an important habit to acquire. Focusing on your breath, your space, and simple tasks around you as you go about your day can help ease your mind and distract you from what you cannot control. Try setting simple and realistic goals of how much water to drink in a day or how often you will exercise per week. This can help keep your mind off anxiety.
Mindfulness meditation is another healthy stress reliever. I have been using the Calm app for the past year to meditate every night. It has now become a healthy habit and a part of my sleep routine. Calm has a guided meditation for every occasion. It even has a sleep story by Matthew McConaughey!
Chronic migraine can be incredibly stressful and frustrating. That’s a big problem because stress is one of the biggest migraine triggers. This is why it is so important to learn ways to better navigate and cope with our frustrations so we are less likely to trigger or exacerbate a migraine attack.
6. Reclaim your identity.
Migraine often steals our identity and we become a “patient,” forgetting that we were once more than just a person with migraine. There’s a meme that often gets passed around on social media that says, “I’m a migraine that sometimes gets to be a person.” Even though it’s meant to be funny, I cringe every time I read it. It is true that migraine is a large part of who we are, but it does not get to define us. We are so much more than migraine. We are children, sisters, brothers, teachers, artists, friends, mothers, spouses, musicians, employees and people.
How do we reclaim our identity? We can return to some of the hobbies we enjoyed prior to becoming chronically ill. Sometimes we have to adjust those hobbies to be able to enjoy them again, and sometimes we need to learn new hobbies. We have to find those parts of ourselves that we may have lost to migraine.
“What do you care about in life beyond migraine?” asked Dr. Buse during her talk. In the past year, I returned to reading books. In addition to reading books for the MOMs Club, Migraine Strong also started an online book club.
What hobbies can you get back to? This could be meeting a friend for tea, coloring in your favorite adult coloring book, baking, cooking, going on a date with your significant other, reading books, doing photography or bird watching. Anything that helps you feel like yourself.
7. Create a mantra.
A mantra is a series of words or phrases repeated over and over in your head or out loud. So many of our thoughts tend to focus on things we’re worried about, that bother or frustrate us or are going wrong in our lives. Mantras can help push out those negative thoughts, quiet the mind chatter, and give the wandering mind a focal point.
Mantras have physical benefits as well. Mantras can boost immunity, relieve stress, anxiety and depression, regulate the nervous system, release happy hormones like serotonin, dopamine and endorphins, regulate heart rate and lower blood pressure, and solidify goals.
I repeat phrases such as “I am strong,” and “I got this” when I am in the midst of an attack and have to carry on with my day as I bring the kids to preschool or try to keep them occupied when we stay at home.
Pick a phrase that will help get you into an empowered, positive frame of mind. Jennifer Bragdon, an admin at Migraine Strong encourages everyone to do the Superman power pose while repeating their mantras.
These sayings can help you fight self-doubt and prove invaluable on your journey to thriving with migraine. Sometimes, if you repeat a mantra over and over in your head, it may actually come true!
8. Practice gratitude.
I will add one more suggestion of my own to Dr. Buse’s list that has helped me over the past few years to thrive with migraine — gratitude.
Gratitude has so many benefits. It can strengthen our immune system, release natural endorphins into the bloodstream that help us better cope with stress and pain, relax our heart, improve our sleep, and boost serotonin and dopamine.
I began practicing gratitude after spending a week on vacation last summer with my sister and our families. Every evening during dinnertime my sister encouraged us to go around the table and say what we enjoyed the most about our day and what we were grateful for. My children loved doing that so much that we continued this practice at home when we sit down for dinner. That’s when I also discovered my favorite guided meditation on Calm, which is about gratitude. I love turning it on during an attack and it reminds me that I have so much to be grateful for.
The more our brain looks for things to feel grateful for, the less effort it takes. An effective way to get into a habit of practicing gratitude is to write in a “Gratitude Journal.” The idea is to jot down 5-10 things you are grateful for a few times a week. You will find that the more you journal the easier it becomes and you start intentionally looking for things to be grateful for throughout the day.
Strive to Thrive
Living with migraine is no easy feat. This illness can spread to every aspect of our lives, affecting our mental and physical health. Many of us are barely surviving, but Dr. Buse showed us that we can do more than that. We can strive to thrive with migraine. Even though thriving may look different to all of us given our family structure, hobbies and expectations, I believe we can get there at our own pace.
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