Replacement activities when living with pain
I have lived with chronic pain from dystonia, a neurological movement disorder, for nearly 20 years. The first 5 years my symptoms were so severe that I was barely able to get out of bed… where I proceeded to spend the day on the floor rolling around trying to find some level of comfort. The pain was beyond words that I can describe. I was unable to sit or stand more than ten minutes before the pain dragged me to my knees. I also dealt with severe anxiety, depression, and isolation. I also became morbidly obese because of very poor lifestyle habits trying to cope with this complete life change (before and after photos below).
I was formally very active in private business, social events, athletics, someone who traveled, and pretty much anything a healthy person would do. I was involved in many physical activities such as baseball, golf, hiking, swimming, tennis, martial arts…you name it. I derived great pleasure from these activities. When I could no longer do them, I felt worthless. I felt a deep sense of loss. Basically, I had an identity crisis for about the next 5 years.
After much trial and error, over the years I was able to find some symptom management protocols to where I was not suffering in pain so much. Much of this is outlined in my book. As the years have progressed since 2001 when this all started, I have been able to improve upon these changes, but my life is still not like it was before dystonia. I am still not involved in some of the activities mentioned above, which is where I excelled the most and where I really got the endorphins flowing and felt the most joy.
I have since replaced many of those old activities with new activities where I am able to derive as much pleasure. These are things such as writing, gardening, and photography to name just a few. I was not all that interested in these things before dystonia and I began to wonder what it was about them that give me so much joy. What I realized is that I approach these new activities the same way I approached previous activities, and consequently, achieve the same outcome.
Take sports for example. When I played sports, I excelled at a high level. Along with the physical activity of playing, what I really enjoyed most was the mental game. I thrived on the challenges that sports presented, and the need to be creative and strategic to better my skill set against an opponent. As much as I enjoyed the sports themselves, what I really loved most was the thinking aspect of playing them, similar to a chess match. For anyone familiar with sports like golf or baseball, it takes a tremendous amount of thinking, strategy, and concentration prior to the event or game itself, as well as during the event or game. This is what I loved most.
For many years after developing dystonia, I did not do anything that challenged my strategic, creative mind. After years of sitting around bored to tears from being so sad, I began doing some creative writing. From there, things steamrolled into other creative outlets. I now take on projects and hobbies that challenge me and make me think, and I do things that stimulate my creativity and mental edge to improve; the exact same things I did with sports and other activities I am no longer involved with. Now I get the dopamine, serotonin and endorphin rush from my new activities and every day I feel joy, excitement, and motivation again.
My point in sharing this story is that if you are in a similar situation where you are physically unable to do activities you once could, what is it that you enjoyed so much about doing those things? How can you achieve the same outcome doing new things? What are you able to do now where you can be just as enthusiastic and passionate as all of those previous activities?
I didn’t think like this right away. It took a while to get there. Honestly, I never previously thought about what I was even getting out of my activities or what I was missing so much. I just loved them so much and was so upset I couldn’t do them anymore. That was my only focus. I couldn’t wrap my head around the fact that I was so disabled. All I kept asking was, “why me?” and “how did this happen?!?” I’m sure many of you can relate. What I didn’t realize was that I could look at these things differently and replace the joy I was getting from them with other things and get the same feelings where I felt meaning and purpose again.
Not that we all have the same approach to things, but in order for me to get through this, I had to admit to and confront my suffering so I could process the traumatizing changes in my life. What I eventually realized is that I had to become very introspective and question what I had emotionally gained from my involvement in those lost activities. Once I figured that out, it set my life in a positive new course.
Just because life might be different now does not mean that we still can’t find things to make our lives very fulfilling. Although I was an avid golfer, very much into martial arts, and almost a professional baseball and football player, I don’t miss any of those things. I couldn’t care less if I ever play sports again. It’s just not who I am anymore, and for those who know me, this would sound crazy because I was always playing something. But I have become a different person who does different things, and by accepting the new me I have been able to replace the old me with new things to enjoy and look forward to doing.
Instead of trying to bring back the old you, create a new you Click To TweetSome important questions to ask ourselves are, “what are things I can no longer do because of my health condition and what was it that I got out of those things that fulfilled me?” And… “what can I do right now within my physical abilities where I can get the same positive feelings from these new things?” Then, do your best to replace your old activities with new ones where you achieve the fulfillment (feelings) you desire. In other words, instead of trying to bring back the old you, create a new you. Choose one thing, no matter its size, that you can find a way to become excited about. Then just go with it and see where it takes you.
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Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers Network, The Mighty, Patient Worthy, and The Wellness Universe. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
Seems like every time I am having a really bad day one of your blogs appear in my news feed and my bad day turns into one new adventure into something maybe I can do , even with Dystonia. Thank you so much for your wonderful advise Take care Lynne Yurgel
I’m sorry you are having bad days, but so glad that these blogs come at a good time for you!
This is so inspiring! Finding the possible replacement and achieving the same, or even higher, level of positive feeling is essential to everyone!
Great articulation and wisdom!
Thank you Kevin! I really appreciate that! Wishing you and your Mom well 🙂
This is such good advice Tom and something I really need to work on ! A lot of my energy is taking up by getting through the day as positively as I can ,doing my program , bit of cooking , chores etc . It can sometimes feel like ground hog day , with very little energy for anything else .
You’ve inspired me to really think about a creative outlet . Thank you 🙏
I am so pleased to hear that it inspired you! I know that groundhog day feeling and while I find keeping a schedule to be very important for my health, changing things up a little and/or doing things differently helps.
I forgot to mention, I ran a successful business Seal-Krete Inc. for 20 years too, traveling, meetings, face to face with Billion dollar companies trying to sell our products (Sherwin williams paints, Glidden paints, Home Depot, Lowes etc……) ended up selling the company in November 2001 and part of the reason for selling was because of the difficulties of CD/ST…..as I said early on, we have a lot in common on our life’s journey……..Continued blessings brother!
Tom, I mirror a lot of your journey, golf, jogging, walking, lifting weights, football in the military, police officer training as I served as both a police officer and deputy sheriff in Polk county, florida…….I played golf for a number of years after contracting dystonia in 1999 but it was a struggle……I now ride a CATRIKE recumbent Trike for exercise and continue my walking but no jogging. Of course I do stretches etc for my muscles……Your article was right on target….thank you for sharing…..BTW, I hope you escaped the Wrath of Isias (SP) when it missed us in Florida and headed up your way…..Stay well my dystonia friend….Vic Shumate
Wow Vic! I know we have talked about this in the past, but I didn’t realize just how much we have in common! I wonder if you feel that the “previous life” helped prepare you to adapt to the CD/ST life? I wish I could say I escaped the wrath of the hurricane, but a tree fell on my car 🙁 It has extensive damage and is currently in the shop being assessed by the insurance company. It has been quite a stressful week to say the least. I hope you were spared. Take care and thanks very much for sharing!
Another good one. Lots of wisdom.
Thanks very much Harriette! I hope you have been doing well!