I was in need of inspiration for my next post when I came across the blog linkup party sponsored by Sheryl Chan from A Chronic Voice. We’re given five words to use as prompts for sharing our experiences living with chronic illness. This is the first month in which I’ve participated. I found it to be a really nice way to share some brief thoughts on everyday life with our particular disease – in this case, what inspires me, what I dream about, what I need to reduce and want to create, and what I am listening to.
There are some fellow migraineurs who I have come to admire for their advocacy and the support they provide the migraine community. They have inspired me to think about what I can do to advocate, too. It has taken me a while to get to this point. I needed to work through the anger, pain, and loss of chronic migraine, and the frustrations of trying and failing various treatments. However, now I’m coming to accept my current situation. Acceptance has given me more energy to think about what I can do to help others going through the same “journey.” First, I hope by sharing my experiences through this blog, I can help others avoid some of the struggles that I went through. Second, I want to start doing more in the migraine community. At the moment, I’m judging my capacity and learning what is out there. With time, I hope I can also contribute to migraine advocacy.
I dream about getting my symptoms under control enough to have a few predictably “good” days in a row. I dream about having a migraine-management plan that works so that when my pain and other symptoms flare up, I have a working abortive plan. If I had these two things, my world could get so much bigger – I mean that figuratively and literally. It would mean getting back some of the life I had before chronic migraine hit. I don’t expect life to go back to “normal,” but I do dream of gaining a little ground rather than feeling like I lose it.
I need to reduce the amount of time I spend on social media. On one hand, because of my chronic illness, the internet is what keeps me connected to friends and family. It’s also where I share my experiences and try to advocate for other migraine patients. On the other hand, a percentage of my time can definitely be considered wasted online. These days, it’s easy to get sucked into the drama of Facebook or Twitter. Something might seem helpful or useful in the moment, but I later realize that my energies would have been better spent elsewhere (e.g., offline, on myself). I’m resolving to take more breaks from social media and put my energy elsewhere – get some exercise, read, or… create.
In June, I took part in a fundraiser for migraine advocacy and research. As part of my fundraising efforts, I promised the first person to donate $50 a hand-knitted gift. I only learned to knit last winter as a pain distraction. It took me all winter (and part of the spring) to finish a very simple scarf. So I’ve been meaning to figure out something to create for my friend, Alyssa, who so generously donated to my fundraising campaign. If there are any fellow knitters out there who have ideas for easy knitting projects, do share!
I’m trying to join a book club. I say trying because there are a few hurdles to overcome like getting the books in audiobook format with time enough to listen before the group meets and feeling well enough on a Friday night at 7:30p to even make it to the gathering. Anyway, this month the group has chosen to read “The Age of American Unreason,” by Susan Jacoby. It’s described as a cultural history of the past forty years. Migraine brain means I often pick light, mindless mysteries or dramas that I can listen to without having to engage too many brain cells. This has me intrigued, though. The description of the book includes the following: “Sparing neither the right nor the left, Jacoby asserts that Americans today have embraced a universe of ‘junk thought’ that makes almost no effort to separate fact from opinion.” And this was written in 2008! I guess my hope is that reading this book will help me understand how our country has gotten to where we are today. That’s all I’ll say on that topic, for now.
So there you have it! How I’m spending October inspiring (or being inspired), dreaming, reducing, creating, and listening. What about you?