Sunday, January 1, 2012

Chronically Missing Out & Chronically Living

As the Rewrite Your Day campaign for chronic Migraine awareness demonstrates, people with Chronic Migraine sadly miss many events that are important to them because of this illness: big events and little moments. The first of several winners in the Rewrite Your Day Campaign had a Migraine that disrupted her whole wedding day. Her prize was to have celebrity event planner, Mindy Weiss, plan a ceremony where the winner and her husband had a vow renewal "wedding" ceremony of their dreams. Click here to see a bit of video of the occasion.

The holiday season of Thanksgiving through the New Year, brings many events big and small that Migraineurs and those with other chronic illnesses miss out on and probably wish they could rewrite. As the December 2011 Headache and Migraine Disease Blog Carnival demonstrated, we work hard to decrease triggers to prevent these situations. But inevitably, we will most likely face an event that we will miss out on or weigh heavily on whether or not we should push ourselves to attend only to regret it later.

George and I went to Kentucky for the Christmas holiday this year for ten days to be with my family. We almost did not make the trip because my health was so poor, but George muscled through packing our Honda Civic Hybrid to the brim, carrying myself and the three dogs into the car and driving the 5 1/2 hours (yes I do believe he was going pretty fast) to get there.

Making allergen-free cookies with my dad.
I had many wonderful moments of being with family: making cookies, doing a puzzle, talking with my sister-in-law, watching movies, going out to eat for the first time in months(!!!) and being present for Christmas morning's gift exchange.  A dear friend from Cincinnati who had a miracle baby in September came to visit and ran to me once George had opened the door as we hadn't seen each other in almost five years. So many precious moments.

I also missed out on a lot, but I'll only mention the big things: spending the extremely special times with my family of Christmas Eve, Christmas Eve dinner and the second half of Christmas Day, spending time with good high school friends I had not seen in a while and meeting their children.

As I laid in my bed all Christmas Eve day, and during special Christmas Eve dinner, I could hear my family's voices echo through the house. I could picture what I was missing in my head: the food, the lively conversation, the smells. I only go to my parents' for Christmas-time every other year so it is a big deal for me to miss such meaningful times.

I allowed myself to be sad, to cry, and to be disappointed. Not being able to spend time with my family; friends during important times is something to feel grief about and to vent about. But, after crying and saying a few choice words directed to my body and to God, I made a decision not to feel sorry for myself and to limit my pity party.  After the pity party, I decided that I needed to focus on taking care of myself.  I made the choice by telling myself that this is just one day--an important day, but in the long run, I have other days I can make just as important.

My conditions are chronic, so unless I am some day miraculously cured of everything,  I am not going to avoid having bad days health-wise on days that are significant to me, like Christmas Eve or a friends' wedding or an important get-together. Finding acceptance with this has helped me to go through disappointments with less stress and even a bit of peace. I have constant pain, chronic Migraines and several chronic illnesses that incapacitate me, yet I still have choices, even if sometimes it is only a choice of how I view my situation. But that is a big choice.
My brother, sister-in-law, myself, & George (not pictured my parents and uncle) at a restaurant!
And then on days, parts of days, hours or a handful of minutes where I am able to participate, I make an effort to make them as meaningful as possible.


  1. Kelly, you are so great at accentuating the positive. i'm so glad you made the trip to Kentucky. we have grown stronger in 2011 and we will face 2012 with hope when we have challenging days. let's rock this year baby!

  2. It's important to spend whatever time we can with our families. I'm glad you were able to enjoy some of this time with your family. I hope you have a happy New Year!

  3. I'm so glad you were able to participate in at least some of the festivities. You look so happy in the photo at the restaurant.

    I have found trying to be happy for my loved oes who can participate helpful.

    It's described in this article very well.

    I've gotten a lot of help from Toni's book, How to Be Sick. It is inspired from Buddhist teachings, but I think the things she talks about could help anyone.

    I hope you have less pain, and more special moments in the upcoming year.

    love to you

  4. Hello Kelly,

    It is so unfortunate that most of us in chronic pain miss out on so much of Life's joys. Indeed you are a very strong woman to focus on the positive aspects however little they may be during any occasion. For myself, the times I have to spend away from my children and in a dark and silent place bring me so much more pain.

    I certainly have my pitty-parties and continue to seek out new ways of acceptance despite my day to day "wasted energy" of the "why me" and other negative thoughts that consume my mind.

    I am hoping and praying 2012 brings me more pain-free days and/or some form of better acceptance. Indeed, I am hoping the new year brings you the same!

    I commend you on the personal and physical strength you continue to share with others through your blog. No matter how bad your pain is and if ever you feel "what is the point", do know that your blog DOES help me to know that someone else is fighting the same battle as I am. The whole, "what is my purpose in Life".....I am still figuring out mine!

  5. Kelly, I'm so glad that you were able to spend some holiday time with your family. And, congrats to you for having your pity-party, then moving on to more positive and hope-filled thoughts. You're such a blessing in my life. Here's to less pain in the new year.

  6. Thanks, Chris! I love your attitude! Let's rock this year!

    MP, thanks! I hope you were able to enjoy some of your holiday. I'm not caught up on my blog reading!

    Wendy, if you look closely in the photo, I am in my wheelchair. Drop attacks abounded. Thanks for sharing the article. It sounds great!

    Mamie, thank you for your comment. That has to be difficult to miss the time with your children. I used to feel the hours

  7. Oops! Hit wrong button. Mamie, your words mean so much. I used to feel I was on a treadmill going nowhere and still do at times. Acceptance is a daily/hourly thing for me. I look forward to learning from each other. I also hope your 2012is as well as possible.

    Thank you, Jamie. You are a blessing in my life as well!