When my life was changed by chronic pain I was only in my forties, and it all seemed so unfair. I was constantly searching for answers, reasons why and didn’t do it silently. The search went on in my case for many years until I finally got a decent, adequate and correct diagnosis. During those years, I constantly talked about the way I felt and the changes it had wrought in my life. The silent service would never have recruited me because almost everything I think comes flying out of my mouth. I chattered away so much I almost drove my poor husband to commit “spouseicide.” I know; there is no word for wanting to “do in” your spouse but doesn’t that say it most tactfully than kill, murder or bludgeon to death? Actually, I think he would have settled for a role of duct tape wrapped around my pearly pink lips but thankfully, he didn’t go that route, either. One day he simply told me, quite honestly, I was driving him crazy with all the talking.
That’s when I learned to shut my mouth. I was determined to find answers, constantly hoped for change and had a terrible time accepting living in pain every day of my life. Three years into this misery in my sacroiliac joints, unexplained rashes from being in the sun and hideous fatigue, we drove to LA where I saw a world-renowned rheumatologist who listened to me, believed me and understood I had pain in the SI joints. He didn’t know why or what it was but he called it lupus like syndrome and proceeded to treat my symptoms. Simply by believing meand treating my symptoms, he saved my sanity.
I improved to the point the pain was more manageable but still found myself wracked with guilt. First of all, like most folks who become chronically ill I wondered if I had brought this “thing” upon myself because of something I had done. Finally, I put that to rest because of my family’s history of rheumatoid disease and could blame it on my DNA. As far as the guilt, I had a lot to feel guilty about. I couldn’t bring in my share of the family income. I felt unattractive, sickly and basically all used up; in my forties. I could only carry half the load I had once carried of the housework, the yard work, the shopping and the cooking. Our social life was affected by my pain because I always felt like crap and definitely didn’t feel like small talk, work talk or casual conversation in a restaurant or visiting friends. I simply felt like standing up and shouting, “I don’t give a rip about this because my ass is killing me and I’m going home.” Propriety usually won out and I didn’t do that. I know, I was surprised, too. Little by little I began to turn down invitations, even to family events and occasions when the grandchildren were performing and we began to lead a very quiet life. I simply couldn’t sit. It hurt to the point my legs would become numb and it was difficult to walk for several minutes after sitting.
The guilt is always there, as a parent, because I always wanted to give 150% to my kids and grandchildren. I felt then and now I only give about 20% to all of them. My son and his family live in Texas and I cannot travel, therefore, more guilt and four grandchildren who don’t really know me that well. When I first became ill my two children were teens and understood and helped generously with chores, etc. For all six of my grandchildren, I have always been ill. It’s a strange feeling to be that “sickly” Nana/grandma and I don’t like it. I simply trudged on each day. I always get dressed in the morning and make an effort each day not to look like Bette Davis reclining on a Hollywood set’s fainting couch, then and now. I don’t always succeed and resemble dear Bette more than I like.
Thankfully, my dear man is a homebody and never complained although he had work and was able to socialize and get some interaction by doing his job as an RN. Now that he has retired, I think it has been harder on him at times. When I found myself living a life of compromise I was surprised because it is not the life I had planned to live. I wanted my health problems and daily pain which were increasing to be gone, but they stuck around like old fish, stinking up my life. I constantly felt any control I had over my life slipping through my fingers. I think when we are healthy, we all feel we are in charge of our lives; I did. It came as quite a surprise when I realized I was in control of very little. Everything I had planned and worked for in my life was suddenly changed, taken away or altered. I constantly prayed for grace and dignity during this whole mess that my life had become. There were many times my faith in a loving God wavered but I always found my way back to Him and always feel His presence in my life. Some days I feel He is farther away with his love, answers and comfort but then I realize He never moved away; it was me.
When one lives with chronic pain and illness, we naturally have to do what is wise in taking care of ourselves but I was taught one has to be very careful and not let it be one’s whole life. I now know it’s very important to fill my life with diversion. Over the years that has taken many forms, such as reading, creative writing, crafts, sewing, etc. Fortunately, my husband likes many of the things I like such as movies, reading and leading a quiet life. I took a couple of writing courses at the college but that was difficult because of the sitting. I learned, after many years off and on with physical therapy, which stretches and exercises I can do. That has changed over the years as I have aged and my conditions worsened but I knew I had to move my body. Exercise of any intensity, however low, creates endorphins.
Just a brief word about endorphins which are neurotransmitters produced by the brain to transmit signals to the nervous system. They can be found in the pituitary and in other parts of the nervous system and thus far, twenty types have been isolated in humans. They behave much like morphine and opiates to alleviate pain and to basically, protect us. They are responsible for aiding the immune response, creating feelings of euphoria, effecting appetite and we all have known about the release of them during and after exercise.
My eldest sister suffered terribly from psoriatic arthritis and when she could no longer work as a model and fashion buyer for a large department store, she never had idle hands. They may have hurt often, along with several other joints, but she kept them busy. She drew and painted wonderful pictures of old barns, dilapidated and full of pastoral peace. She worked on needle work such as needlepoint and other projects. She made and sold beautiful hand-made jewelry which brought pleasure and purpose to her life and to others. She was a fine example for me when I could no longer work as an RN.
I subconsciously found myself also filled with the need for diversion and creativity. My body was filled with pain but the mind was still buzzing, especially in the early days when the doses of prednisone were higher. My engine was running but my car was broken down. I began to search my heart for all the things I never had time to do while raising children and working as a nurse. I began to read about quilting and started doing it, took up the tedious skill of counted cross stitch with fervor and returned to writing in a diary I had kept long ago. It has always helped me to express in writing what is going on in my life and heart. I had previously majored in English lit in college and started writing poetry. Another one of my sisters was taking a creative writing course at her local college and told me rhyming poetry was out of style. I wrote straight prose as well but so often when I wrote, then and now, it comes out in rhyme. Out of vogue or not, that’s how my brain works.
Writing has been my main diversion but I have tried many others, such as watercolors. I have never been much of an artist but thought it would be fun to try. Since I can’t sit in a classroom for any length of time, I just jumped right into it. I painted a picture of my daughter’s wedding bouquet which was red baby rosebuds surrounded by lace. She liked it because I had painted it for her. I framed it and she keeps it beside her bed. To be honest, it doesn’t look like a wedding bouquet at all, more easily resembling a pepperoni pizza. That’s when I realized I didn’t have to be good at my creative diversions, I just had to try. The pleasure, act of creativity itself produces endorphins and takes my mind off of my pain.
There was a wonderful article in the Sept/Oct 2012 edition of ARTHRITIS TODAY about artwork and the role it plays in making patients feel better. Written by Esther M. Sternberg, MD. She explains the role of observing beauty for hospital patients. She shares the story of a hospital in Dublin without windows in the bone marrow transplant unit and how Professor Shaun McCann started the Open Window Project and commissioned murals to be painted on the walls of the windowless rooms. The artist chose bright colors of local events and the patients loved talking about them and the diversion was very effective. The patients were then allowed to choose other images of things they loved. The good feelings brought on by the release of the endorphins led to healing, diversion and joy during a difficult time in their lives.
My dentist has fluffy white and blue clouds painted above the dental chairs on the ceiling directly over the patients. Since my dentist’s office directly overlooks the beautiful Columbia River with all of it’s amazing shades of blue against the sky, his patients are twice blessed and diverted. It’s hard to feel beauty and diversion in a dental chair, but possible.
I urge you, my friends to examine your own lives and search your hearts and minds for areas of your life that are unexplored, “It ain’t over ‘til it’s over!” Each of us have areas of our own lives that are hidden talents, desires for expression that we can and should explore. Please, examine them in your own lives; just keep it safe, legal and creative. Your body, your spirit and your life will thank you for it.