During the first year after being diagnosed with fibromyalgia, I was desperately trying to hold on to the life that I had lost. I spent hours sitting, looking out the window, trying to figure out how to make sense of what was happening to me and how to cope with my fear.
I needed a diversion so I started piecing together a new quilt top for our bed. Over the years I had made several quilts, choosing both easy and very difficult patterns – some I finished and some are in a drawer. I looked through my quilting books and picked a new pattern that appealed to me. Here is my journal entry about how this process both helped me cope and seemed to reflect how I felt about my life during this time:
Sewing on my “Contrary Wife” quilt continues to bring pleasure. This has been such a good project because of the symbolism. The name of the pattern fits how I feel I am perceived because of my need to maintain control in my life when I don’t seem to be able to control what my brain does. I know I come across as contrary and always putting up a fight. On the other hand, the pattern is bright and colorful.
It was fun to use all my favorite fabric while buying lots of new pieces. This is bringing joy to days that could otherwise be quite devoid of joy. Each block is unique and different while having a constant pattern. As I look at the different blocks I have designed, they seem to reflect how I experience life on different days.
Some of the blocks are muted and relatively dull – although I love the fabrics and find the combination of fabrics pleasing. Some of the blocks are very bright and intense. Some are high contrast, maybe even sharp, like the pain I feel in my legs and arms. Some blocks are not so pleasing by themselves – the colors are not my favorites and I would leave them out if they weren’t necessary for holding the rest of the quilt together. Sometimes the unpleasant colors of our life-quilts are necessary for the overall beauty. I also like the strong lines of the pattern when the blocks are laid out. The strong diagonal lines seem to hold the quilt together, just like I need strong lines of faith and love to hold my life together.
The most important characteristic of this quilt pattern is the fact that, with careful work, I can make the points and seams line up. With a little effort in measuring accurately, sewing correct seam widths, and multiple re-stitching, I can make it work out. I need this as I am struggling against what seem like the insurmountable odds of finding what will work to help me feel good with a condition that will not go away even if I do everything right.
I am so glad I have my faith to guide me through this. I have to believe that God has provided me with everything I need to make the most of this situation. Of all the hundreds of quilt patterns that I know are just waiting for me to do, the one that I felt compelled to do is the one that is perfectly meeting my needs.
I finished the quilt top but it was several years before I took it to be quilted and I finished binding the edges so I could use it on my bed. This was my “fibromyalgia quilt” and fibromyalgia was causing me so much emotional and physical pain that I couldn’t get my mind around how my “fibromyalgia quilt” could comfort me as I lay under it.
People deal with traumatic experiences by finding something good within it or turning it into something positive – we want to find meaning in our pain. I wanted to find some good in having fibromyalgia but I couldn’t, no matter how hard I tried. Maybe not wanting to get comfort from my fibro quilt was symbolic of my not wanting to see any positive in having fibromyalgia. Maybe it was a symbolic act to express my anger over having my life and my very self taken away from me. Wrapping my “fibromyalgia quilt” around me and getting comfort from it was something I refused to do.
I finally did enough emotional healing to finish it in the sixth year after diagnosis and it has become a beautiful expression of my determination and courage. I’m still not sure, however, that I can find any positive meaning from having fibromyalgia. My life is good, but not because I have fibromyalgia.
Copyright © Patricia A. Bailey, 2012-2013.
A New Day: Living Life Almost Gracefully 
I can see where this was a healing journey and also a meditative one. Thanks you for sharing your story, Pat.
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My mother was very quiet and reserved in her youth. She said there was a freedom that came with age, and she enjoyed it. She was much more outgoing with everyone, even strangers, and it suited her perfectly.
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It is interesting, isn’t it? I think you could write a great book–you have the talent and the perspective. Blogging is really fun, and it exercises different parts of the brain. It is through blogging that I learned how to use photos to help tell a story. It does create a conflict when it comes to sitting down and working on a novel. Maybe you could write an e-book, Pat. You could use your photography to help tell the story. The first volume could be titled, “I Miss Me, Too.” Your sequel could be, “Getting to Know the New Me.”
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The problem is that I don’t need the money and I realized that I don’t want the hassle of publishing, and the marketing part would drive me up the wall. I have paid my dues and now I am having fun! Lots of fun! Maybe someday I could do an e-book publishing my favorite blogs as “essays”. This blogging thing is new to me so I’m figuring out what I like to do best. I did one on “Time Heals” recently that I really like so maybe I’ll do more of those – with lots of flowers posted in between. 🙂 And of course we do some traveling and those make good blogs – like your Italy stories. Thanks for the feedback and encouragement. After seeing your work, it carries weight. 🙂
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That’s really kind, Pat. I will look up that post. Sometimes, if you have even just a possible goal in the back of your mind, such as a collection of stories that relate to healing, you can meander towards it while enjoying the journey.
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I like that thought. I do have a lot to say about healing and especially the power of relationships in our lives. And I have the book knowledge and experience. I just don’t want anything to take away the fun of being able to express myself with “my voice” within my time frame. Getting older does that to people. I love it! 🙂
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Dear Pat, I am so sorry to learn of your illness. The title of your blog makes so much sense to me now. Your imagery is so wise and thoughtful. You are a fine storyteller. I think storytelling helps us makes sense of the world, and as a blogger with a talent for language, you are going to help others make sense of their world too.
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I started writing a book but then found that blogging is so much more rewarding. In fact, starting some serious but casual photography and the blogging has made a big difference in my life and functioning. My doctor had told me several times that he looked forward to my stories but I really didn’t know what he meant. I do now and I love telling stories. I have thought about changing the name of my blog because I no longer miss me, but I think I need to continually remember that time. Thanks for understanding.
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Pat, how about changing your blog name to ….. discovering the REAL ME….
just a thought. having an ilness like me and you have, there is soooo much dissapointment to bear with, but looking back we discover sooooo much other strenghts in our life and surroundings when not being able to do what we want to do or what other people think we should do or be able to do….WHEN they tnink it should be done….. you will know…. we get there in our own time…. at our own pace…. and very often get somewhere else which we do not planned, but actually ar faaaaaar better than what we have planned. Love. Christna
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Thank you for your great comment. I woke up this morning knowing it was time to change the name of my blog. I am now exploring what the title should be and will consider the name you suggested along with some others. Your timing was perfect.
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Hi Pat, can’t sleep so i am reading blogs…. i really can hear what you say…. it is 22 yrs now that i am battling with Chronic fatigue, however i am not now as ill as then. but it still strikes again and again. lots of different aspects had to be addressed, it have so many angles and sides and insides…. all so connected. I had to give up nearly all my hobbies, and also my work as a teacher. Getting married and getting 2 teenagers in my house were not easy, but now i am a grandmA OF 3 BEAUTIFUL GRANDCHILDREN . i CAN READ AND HEAR IN YOUR BLOGS YOUR UPS AND DOWNS, as i can identify with you. some days just have too many hours…. but the next day is always a new opportunity. and once you get to live with the ups and downs and accept them as normal, it gets easier…
Thanks for still sharing all those beautiful pics. I really enjoy them. love. Christna
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I’m glad you shared your story with me, Christna. Your experience feels very familiar to me and I know what you mean about the good and bad days becoming just a normal part of life. It sounds like you are a fighter and very resilient.
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