“Not succeeding as I know I could feels an awful lot like failing.” I have struggled for years to comprehend how success and chronic illness can coexist, but texting those words to Hart Saturday night took my breath away. This puzzle has been Since my year-long reprieve from eating-triggered migraine attacks ended last spring, my mind has been churning particularly hard to understand what success means when I’m too sick to live up to my potential.
I’m not writing this for reassurance. I know my work is valuable and my words connect deeply with people. I see humbling comments from readers every day. Still, I want to do more. I have more to give. My body won’t let me give it.
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The first day of every American Headache Society conference, I eagerly pore over the schedule and abstracts. I’m so excited to see who is speaking and what I might learn. I know I may not make it to every talk, but love exploring the possibilities. I did that Wednesday night (following the Thai restaurant meltdown), then spent Thursday and Friday laid up. Time ticked by while I thought about the sessions I was missing and the people I wasn’t getting to see.
By Friday night, I was a surly mess. That’s when I wrote the first part of this post. This year has been difficult emotionally; the last few weeks have been especially rough. Missing the conference was not surprising given my health and San Diego’s June gloom. But it hurt nonetheless.
I finally made it to the conference Saturday afternoon. It felt so good to be there and I had a great time catching up with people I know and meeting others I’ve known online, but hadn’t met in person. I visited the exhibits and learned what products are in the pipeline for treating migraine and cluster headache. The eight hours I spent at the conference energized me and negated the difficulties of the previous few days. I left fully aware that I’m not succeeding in the ways I know I can, but was also cognizant of how much I’m doing despite significant physical limitations.
I haven’t given up on realizing my potential. It’s frustrating, but it’s also tremendous motivation. I want to get better because I have so much to do in the world. On difficult days, not achieving as much as I’d like does feel like failure. When I step back from that emotional reaction, though, I can see that every little bit is progress toward my larger goals. Part of me despises having to celebrate my successes despite migraine, but the rest of me knows that my struggles make my accomplishments even more worthy of celebration.
I believe I will reach my goals one day. I have to believe that. Even if I don’t know when it will be.
I took several years off work trying all sorts of treatments with minimal success. I realized that if I spent the rest of my life in bed with a migraine I would likely end up alone. I decided to go back to work. I started volunteering and then tutoring ESL students. Things I could control. INicola about a year I was working more than full time just fine. I had decided to live with my migraines. I stopped looking for a cure but had a wide array of medications to manage them. My husband took over the household duties.
It is six years later and this has been the worst year yet for my migraines. I have a supportive employer. I let them know when I was hired that I have migraines. I get my job done.
Last year I started in an MBA program. This year I asked for support from Disability Services. This means instructors let me hand things in late or don’t expect the same participation.
Like you I don’t ever feel like we get ahead. This year I feel like I am back at square one. I changed my focus to work and school. When my migraines get too bad I stop and take a break. Instead of feeling frustrated that I am not making progress with my migraines I am doing well at work. I have a migraine most days; I push through.
Someone asked me how my migraines were last week. I shrugged and said “they are”.
She said, “you live with them.”
“Exactly,” I replied.
It felt good because it shows my work now accepts they just are and I am living with them.
I would do anything to be rid of my migraines. Its not likely to happen so I do the best I can.
Hope this helps.
One of the hardest aspects for me is the lack of “progress”. Sometimes I have one to three “good days”, then I go back to being housebound again for weeks or months. The “good days” don’t pile up, PROGRESSING into increased strength, recovery, healing. I just go up and down, up and down, up and down.
Years ago, when I was healthier, I would exercise and my muscles got stronger and stronger over time. But that doesn’t happen for me now in any way. A good day is just that. It happens and then it goes away and then it might happen again. After fifteen years of daily migraine I’ve learned that my actions have no effect on it outside of doing something cartoonish like banging my head against a wall. I guess that would hurt. Certainly nothing I do makes it BETTER.
My actions also have little to no effect on life “outside’ my migraines, as there is very little space in my life that isn’t dominated by migraine. I just have to cope with it as well as I can. Maybe sometimes my coping skills progress, but sometimes I feel as emotionally lost as I did during the first year.
Life had PROGRESS before. There were steps that led to the next steps. Accomplishments that built up to something more, over time. Chronic migraine leaves me no way to have that in my life. I’m always starting over again. Over and over and over again. Web sites like this one are very supportive and I’m grateful for this one in particular. The only other way I really get relief from the repetitive disappointment is with an antidepressant that is working well.
I too believe I will reach my goals one day. It may take me a little longer but I will get there. When it gets too much I stop, slow down, do what I need to take care of myself, and then get back up and keep going. I truly believe that I am stronger because of my migraines. There may be days when I feel like I am losing my mind. Then there are days when I am roaring ahead. Keep your head up. Stay strong. If we can live in chronic pain we can do anything. 😊
Miss Kerrrie,
You ARE a success. It’s not the way you planned or what you thought you would be doing, but you are succeeding by sharing your journey and inspiring all of us to the best we can be even when that varies so much every day. You keep at it and that, in my book, is success. I really missed seeing you on Sunday. We keep missing each other every year. Maybe next year will be the year we actually get meet in person.
So glad we work together to advance the cause of migraine awareness.
It’s tough juggling limitations, triggers, desires, expectations, needs, and wants. I’m so impressed with how much you’re able to accomplish given the severity of your migraine disorder. Please do celebrate and enjoy your life, Kerrie. You’re a leader and beacon, giving us hope that there’s something out there that will help.
This sounds like something I could have written as it encapsulates my experience with migraine so perfectly. I hate that there are others who have to live as I do and deal with the same challenges and doubts, but I appreciate you sharing your experiences so I know that I am not alone.
“Not succeeding as I know I could feels an awful lot like failing.”
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This, exactly 🙂
I appreciate your story. It is so painful to know that we are limited by our migraines. I had to back away from so many opportunities, so many projects, so many commitments. I stopped making commitments because it felt so bad to cancel, to not fulfill my responsibilities. Many of these are voluntary things, but things that add richness, pleasure and purpose to my life. Giving up on them, or feeling ‘unreliable’ is disheartening and impacts my sense of self. And when I am having a stretch with fewer headaches, it is still hard to trust that I will keep being better. Learning to be patient with myself, and my headaches, has been a significant part of this journey. My best to you, and thank you for these posts.