Guilt, Diversion, And Finding Beauty

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.




13 thoughts on “Guilt, Diversion, And Finding Beauty

  1. Sue this one touched my heart. You know how hard it was for me to surrender my work as an RN and how I have struggled with the chronic pain from my psoriatic arthritis and it’s autoimmune friends. I still love working with fiber including spinning it into yarn, making rosaries, and in the past iconography. My life seems to revolve around my water excercise and reading. Reading keeps me sane I’ve always been able to escape into a book. It’s my favorite thing to do and has been since I was a very little girl. Yesterday I had great joy having supper with my godson that his mother (a wonderful cook) made. My life is good. I still have my dad despite his recent health issues (solved and he’s back to work at 85 years old) but I realized I can’t physically take care of him if something major happened. Not having family living nearby bites. My sister lives 3 hours away and her health isn’t great now. Oh well right now dad is fine and I’m hanging in there.

    • Laura, you Dad is tough. Glad he’s doing better and has you. I know you feel isolated but also know you have many friends. Cross some of those bridges when you have to. Often the future is just too darned scary in our own minds. Oh yes, I remember and totally understood when you had to stop your profession. Just curious what kind of books are your favorites types? Reading is so personal, you know. Jim and I have totally different tastes. I’ve always thought many of your interests with the weaving and the historic fairs, etc sounded interesting over the years. Thanks for sharing this one meant something to you. Love, Sue

  2. Oh Sue, what a blessing your post has been to me! I also live with chronic pain and I, like you, have cultivated a creative side to my personality so as to find enjoyment in life despite my limitations.
    Your post has confirmed that I’m heading in the right direction. My pain started almost 5 years ago and I’m still haven’t totally come to terms with the affect it has on my life. But, God is good and I can see His wonderful provision for me in these circumstances;
    a loving & godly husband, a lovely bungalow, being able to give up work, a lovely church family and financial security.
    All these things He gave me 11 years ago, maybe in part as preparation for what happened five years ago.

    • Kay, thanks for sharing. You and share many of the same blessings in the midst of this physical torment. Counting your blessings amidst all of this takes courage and does help so much to bring out the sunshine in your life each day. It’s a rough way to have to live. I don’t know how those without faith, family and eyes to see the beauty get through it. It’s a fine thing to see a pattern of care emerging in your life. I often like to replay the “because you led me here Lord, this happened or didn’t happen” regarding so many events in my life, my marriage and in my children’s lives. The hand of God, guiding and providing. We are blessed in so many ways. Fondly, Sue

  3. Sue
    Wonderful blog. Dying out of the old life is so difficult. It has been really hard for me to accept that there are many things I will never do again. And that list keeps growing as these diseases progress. But, I thank God every day for His mercy and Grace. I need and He provides. And He is good all the time.
    So many things to do. And times seems to fly by at breakneck speed these days. Hope you are feeling better. And keeping Dr in line, lol.
    Love ya

    • Tonie, those of us who have been friends with you over these years on here know how full, busy and how much is required in your life. You know what I mean…just plain hard work each day to say nothing of the emotional claims in your life. You persevere with your faith and stamina even when times seem almost impossible. You have my love and admiration dear lady. Love ya, Sue

  4. All so very true and it seems to resonate with all of us
    A loss and so a gain it seems…..
    Yes a good book is a great escape.altho the eyes get tired with sjogrens and a iPad or kindle is helpful with enlarging
    To visit craft fairs is great and gets your creative side going
    A slower life benefit!,
    Altho I don’t know if Tonie took that option!
    Hope all keeping everything at bay

    • Chris dear, you didn’t let us know how you are currently doing and your DH. Did his ear infections clear up and how is the healing progressing post eye surgery for him. I hope he is more comfortable. Do you have a lot of craft fairs in your part of England? Would love to hear what kind of crafts are most popular over there. Know what you mean about the eyes and Sjogren’s. I couldn’t imagine not having my Kindle. I have been having much more dry eye since going on a diuretic for my edema due to the heart. Everything works together or not…most of the time not. Sjogren’s is a real pain in the tush…among other things.. Love you and hope you’re getting out for those pastries and tea you love so much. Cooler over there now? Sue

  5. Hi to all
    Well dh is slowly improving from the both lower eyelids being done.. had some problems with an eyelash back on itself creating inflammation and then on steroids and antibiotic ointment…hopefully that will stay resolved.the eyeball became like a lump of jelly..cosmosis I think it’s called..but the problem he had it done for seems to be now ok but has to still sleep up high as they all swell if not
    His hearing aid ear is now ok if he keeps the aid out part of day…..of course then he has no hearing at all……..he is thinking of a cochlear implant……I’m saying let’s have a bl..dy rest from stuff first!
    As for me still on going with all problems same old….
    Craft fairs….well starting this time of year they spring up all over the.towns and villages..all types of homemade crafts
    You get them throughout the year but Christmas brings then moreso
    I love going to them it gives me ideas that are sometimes so simple……a trip out for the day,with tea out and a craft fair is a simple antidote to …sh.t…
    Our weather is turning and is always for me an evocative time ….strange..I love this time of year but it can feel sad too
    Yes we are still going out for scones and tea….stopped while dh was recovering for a while

    • Chris, thanks so much for update on your and your dear. SO much. I hope your hips aren’t worse and you are able to get some comfortable positions for sleeping. Sounds like he is making a slow but steady healing with the eyes and am pleased to hear his ears are better. Glad you’re getting out because I know how restorative those little trips are for both of you. Been to the shore lately? Your craft fairs sound lovely. Ours are usually mixed with many other goodies and local art talent. Lots of artists in our area. I think the beauty is inspiring. Yes, turning is a good way to express this time of year. SUch temperature dips, rain then dry and fall in the air. Good to hear from you, Love, Sue

  6. Sue, as you well know, this is so important. It is a quite difficult thing to come to terms with a chronic illness/condition and its effect on our lives and as individual a journey as each person. But what next? Reinventing oneself, finding joy in activities you never had time for or never thought you might can be essential and such a joy. Thank you for speaking to this and inspiring so many. You are a blessing to us all.

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