Meaning in a Quilt

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.

And My World Came Tumbling Down

Welcome to my blog. In January, 2004 I was diagnosed with Fibromyalgia at Mayo Clinic and, along with a lot of other information, I learned it is important to pace my activities and control my environment to reduce stress. I’m not sure I totally comprehended what this meant because I still wanted to work full-time, be an equal partner with my husband in maintaining our home, being a parent, loving our  grandchildren, engaging in worship at our church, and having fun with our friends. Here is what I wrote in my journal:

I don’t know how to judge a good day from a bad day – I don’t know how to live my life. If I don’t do anything at all, I have relatively low amounts of pain but being on the sofa all day isn’t a good day. When I go to work, socialize, and exercise I am emotionally happier but it leads to more pain the next day. (Journal, 01/04)

 I found a good book (there weren’t many published at that time) and I believed that I would soon have my life back on track if I did everything right but this was delusional. The journey that first year was very rocky, with small steps forward and many falls backwards. I was committed to doing everything right but it wasn’t easy knowing how to apply what I learned to my everyday life. It became evident that the only way I knew how to pace myself was stopping when I couldn’t go any further but this method also meant that I did a lot of things wrong and paid a really big price with pain and fatigue.

Along with the pain and fatigue, I experienced frustration, sadness and anger. None of the books I have read talked about the emotional toll this would have on me and how I could mentally cope with having a chronic illness. Learning to cope with the physical symptoms was difficult but coping with the emotional and mental strain was very daunting. Here is a journal entry from April, 2004:

The process of learning to live with chronic pain and being, if not medically fragile, functionally fragile has been more difficult than I had anticipated. It has challenged my thinking, emotions, and beliefs about relationships, my self-esteem and self-image.

Freud summed it up well that all of life is about loving and working, and I discovered that having a chronic illness does a number on both. Developing a chronic illness also impacts on our self-image and our self-esteem – it shook my sense of self to my very core. My degrees are in mental health so I had knowledge of grief and loss, how people cope and change, and had been a mental health therapist. I know how people heal from emotional trauma but I was looking for help in dealing with the ongoing emotional turmoil of facing a condition that is chronic and invisible. I felt very alone even though I was surrounded by family, friends, and colleagues who cared about me and were eager to help. Here is another journal from April, 2004:

Now that I have learned how to deal with the major symptoms most of the time, I find that I am still searching for how to cope with something that is chronic. I read the book on coping with chronic illness that Joyce gave me – it was interesting but didn’t tell me how I can cope. I have found that being sick has touched all my emotional nerves and coping involves resolving these issues. I wonder if anyone can tell someone else how to cope? I wonder if there are similarities to the grieving process due to chronic illness that everyone needs to go through? They say that the pain of grief is lonely because no one can go through it with you. Do I have to figure this out alone?

I did two things to help myself with the emotional pain and confusion I was experiencing; I made an appointment with a therapist with expertise in grief therapy (with the extra benefit of being a nurse) plus I started keeping a journal. The therapist helped me make sense of what I was experiencing by asking the right questions and helping me understand the medical side. My journal was originally intended for my daughters if they developed Fibromyalgia, but I soon recognized that it gave me a place to record the feelings and thoughts I was afraid to express to anyone else, to clarify the issues and feelings I was experiencing, and to record my journey so I could track my healing progress. Keeping the journal became a healing experience. As I write entries on this blog I will draw heavily on my journal because I believe my experiences haven’t been much different than most people’s. I hope that you, if you have been diagnosed with fibromyalgia or another invisible chronic illness, will be able to identify with some of my experiences, will find increased understanding of the psychological problems you are facing, discover ideas for coping, and receive encouragement so emotional healing can take place.

Has a chronic illness led to your feeling like your world has fallen apart?

Did you find that getting sick impacted on your sense of self?

I hope you will share your experiences.

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

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