My Experience at the first Retreat Migraine
I woke up looking at my suitcase and thought, “Did that just happen?”
This weekend I went to the first ever Retreat Migraine hosted by CHAMPin San Antonio, Texas. The second I saw it advertised was the second I started looking forward to it. I boarded the airplane at a pain level 6 and the pain only got worse throughout the weekend. I walked around the beautiful hotel in a pain filled medicated state while spending most of my time in my room. I left mostly to eat or warm myself in the sun while keeping my head in the shade. I watched from Facebook live what I could and attempted to be part of the group while mostly just focusing on making my legs and mind work.
While being so devastated by this, I also wasn’t surprised. This is My Migraine Life. I have been writing this blog for almost 6 years now and the changes I have seen in the migraine research, medication and community are huge. While feeling like I’m a part of this change, I look to so many foundations, associations and groups to align with. All of these powerhouses were at Retreat Migraine and I desperately wanted to meet them all in person. I tried to introduce myself to as many as I could and each conversation left me with knowledge and a sense of what they brought to the migraine advocacy table. I wish I could have gone to the informational sessions and activities that were planned but it just wasn’t in the cards for me.
So the question begs to be asked, “Was it worth it?” and the answer is a resounding “Yes!”
The reality is, I was in the ER the weekend before the retreat and throwing up in an airport the weekend before that returning from a family trip. As a person with chronic illness I’m always sick. It doesn’t matter where I am. I focus on what I can do and not what I can’t. My attacks stop my life but I don’t plan on stopping.
While I missed so much, I gained greatly. A powerful moment for me was when I was siting alone at breakfast. I knew people in the restaurant but chose to sit alone because the swirl of people was too much for me, I was too nauseated to talk and I didn’t want to ruin others time. As I sat staring at my coffee having a really low moment, I had a friend tap me on the shoulder and ask if I was OK.
I had no strength left to hold back my tears. As another friend came over, I sat and cried in their arms. I was so mad that migraine was taking this away from me and even madder knowing that tomorrow most likely held the same fate. When I looked in my friend’s eyes she said, “It’s not F@#$ing fair!” with a hate in her eyes for migraine that only someone who lives it gets.
As someone who has small children and teaches preschoolers, I don’t usually hear the F word but I believe it has purpose. What greater purpose than to say F@#$ migraine! I have so many people in my life that hate migraine for me but looking in her eyes and knowing the depths that it has affected her life I felt a sense of not pity but rage inside her. Seeing and actually hugging someone who feels my internal rage for this disgusting disease was so powerful. Power that brings tears to eyes as I’m writing this.
Just being around people who get it is very normalizing. I never feel normal and these were my people! We look different, our stories are different, our purpose for being there was different but I think we can all say, “F@#$ migraine!” from the depths of our souls.
I can’t say thank you enough to the amazing people who brought us all together. Everyone who works for these amazing groups is sick and at some point, before, during or after was sick. You are the definitions of strength and inspiration! Also, thank you to our sponsors. The products and companies that support this event are what made it possible. Migraine has been ignored since the beginning of time and I’m so glad people are finally investing money into not only research but the people behind it.
Unfortunately, I left on the earliest shuttle and missed the last day. I went to the airport to have a computer glitch and lots of line waiting for my first flight. My second flight was canceled and rescheduled twice and much delayed. I ate soup on the floor waiting in line with intense pain, congestion, dizziness and nausea. I was the first appointment the next morning to hear that I was diagnosed with a double ear infection, upper respiratory infection and fever.
Would I do it again?
YES, YES, YES, YES. This is My Migraine Life. Those people are migraine lifers. Whether you have had one migraine attack or live with them daily, you are part of our group. You know what it feels like to have your brain and body attack you. It’s not OK. I write this blog and continue to work for the migraine groups of CHAMP because we all deserve better. I find such value in meeting you all. I look forward to continuing my advocacy efforts in a fight for us all.