Welcome to the September Prompt post. It’s always a fun challenge to use the prompt words to say something about living with chronic illness. Our prompt words are: Gazing, Shaming, Defeating, Concentrating, and Empowering. A Chronic Voice is hosting another wonderful linky for Chronic Illness Bloggers who want to share our thoughts on the prompt words.
I say this every month, but I can’t believe this year has gone so fast! This year has been super crazy and stressful. The great things about this year are how I’ve been able to see all my kids and grandkids. Now, I’m just trying to plan another trip.
September is a wonderful month and the weather here has gotten a slight amount cooler. The cooler evenings have me thinking about the fall season. When my favorite season comes around I feel so happy. The colors and breezes make me feel lighter and younger. If only they would make me feel less pain!!!
This weekend I was able to gaze on a field of sunflowers. They were in perfect bloom and welcomed visitors to the farm. My husband and I drove out into the Kansas countryside and passed by many lovely farms. When we arrived at the farm the bright golden sunflowers were smiling at us. We walked among the flowers and took many pictures. Pictures never do nature justice; it’s always more breathtaking in person.
Autumn is so beautiful! I hope to gaze on many more beautiful sights in September. There will be pumpkin patches, corn mazes, and gorgeous leaves. The trees here turn the most lovely shade of red. We love to drive around and take it all in. I can’t wait!
When I think of shaming, I think of how I’ve shamed myself so much in the past. I grew up with shame used as a motivator. If I wasn’t the best or working harder than everyone else, I should be ashamed of myself. Shaming may get some temporary results, but the long term effect is damage. Because I didn’t know where the line was between doing something well vs perfectionism, it made my life so much harder than it should be.
Many people in the chronic illness community have been shamed in many ways. We feel shamed by doctors and nurses because they think we could make ourselves better by exercising or dieting. Some of them don’t even believe we are sick. I’ve been told that I’m not really all that sick, but that it’s all in my head. I’ve been blamed for my illness in many ways. I’ve been told that I don’t have enough faith to get well. I’ve been told that I just need to “suck it up” and get up and get better. I’ve been told that if I just (get fresh air, eat right, take supplements, do yoga) I could get well.
Shaming people who are sick is a disgusting practice. I didn’t want to be sick. I didn’t want to have to be someone who doesn’t function. I would love to live a normal life. I love things that take energy: gardening, walking, exercising, hiking, skiing, keeping house, shopping, etc….
I love watching sports. I’ll never forget the opening of the show “Wide World of Sports” when it said The thrill of victory….and the agony of defeat. I always hated losing. I’m a very competitive person and always went after my goals like a crazy person. Being defeated at something was a problem that I couldn’t handle well. So, I worked very hard at things.
Now, I struggle with fighting my illnesses. They seem to defeat me every day. This is one of the main reasons I started this blog. Trying to be content with my conditions goes against the type of person I was when I was younger and healthier. I want to defeat this pain….this fatigue. This isn’t a sport with an ending time. I don’t get a time out. This is life. As long as I’m living I must realize I can’t get a cure for Sjogren’s, Ehlers Danlos, or Mast Cell Activation Syndrome.
Instead of feeling defeated each day, I continue to remind myself to relax. I can’t fix these chronic illnesses. As long as I can get up each day, walk and talk, and think, I’m not defeated. I’m just chronically ill.
No one ever accused me of having ADHD. I’m pretty good at concentrating. Being able to concentrate for long periods of time has been a good gift for me. As a piano major in college, concentration was a necessity. Practicing for 2-6 hours a day takes very good concentration. Having to learn all the things involved in playing such difficult music takes concentrating to a whole new level.
I loved it. But when I had children, I put my ability to concentrate to a new test. I homeschooled three children. It took tons of research and organization to do a good job at teaching three very different children. At that time, my pain levels were under control and I still had lots of energy.
I’ve found that when pain becomes constant and fatigue becomes overwhelming, my ability to concentrate has diminished. Now that I’m older and sicker the brain fog has made a real dent in my ability to concentrate, too. But I don’t want to stop using my mind. Use it or lose it is something I often think about.
Becoming chronically ill took away my power. The abilities I had, the career I had worked so hard for, were all taken away from me. As I got more ill, I lost my looks and my freedom. My illness had power over me. I couldn’t lose weight because of menopause and all the drugs I take (that cause weight gain). My freedom to do things was taken away. I could no longer rearrange the furniture, drive for very long, clean the entire house, do all the cooking, work in my gardens, or shop.
As I dove into my new life and things got worse. I lost my power. I still had it, but at the time didn’t know where any power could be found. I had to do two things to find it again: Give control to God and find out who and what I could do now. God already had the power, but I needed to tell Him that I knew He was right and had a plan. I wanted to be okay with that plan, hence the challenge to be content.
Since I was no longer a musician or someone who could do a lot of things, I had to find out what other things I could pour my time into. Because I had just finished an online master’s degree, I realized how much I enjoyed writing. So blogging came into my life and I felt empowered again. I love writing and sharing here. I really love the interactions I have here and on social media with all of you.
Do you feel empowered in your chronic life? I would love to hear your thoughts on this and any other of the prompt words. It helps us all when we share our successes.
@2021, copyright LIsa Ehrman
Disclaimer: I’m not a medical expert. This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.