Life before and after chronic pain from dystonia changed my world

September 4, 2018

For most of my roughly 20 years with chronic pain and other symptoms from dystonia, I viewed it as a curse; an evil intruder that ruined my life. This perspective has changed over the years and it has made a big difference. Please read on and let me explain, in the hopes that it might ease some of your suffering.

For those who don’t know my story, in short, I went from a business owner, graduate school student, athlete, traveler, go getter, fully functioning outgoing person, to a lump of meat on the floor rolling around in pain unlike anything I knew existed. I could barely sit or stand for more than 10-15 minutes. It felt like there was a drill constantly penetrating the base of my skull, neck, and shoulders, while simultaneously being hit with a hammer. Devastating to say the least. Performing everyday activities such as walking, driving, shaving, brushing my teeth, combing my hair, eating, talking on the phone, sleeping, etc., became almost impossible. I lost all of my money, friends, businesses, all independence, and most of my physical abilities. I know many of you can relate.

I was disabled to the point that I had to drop out of graduate school, give up work and social activities, and move in with my parents because I could not function without help. I felt like a total waste of space and lived with great anger, embarrassment, and shame. Going from an active, independent person to a disabled person dependent on others was life changing. It took me years to wrap my head around it. I lost my will to live.

After many treatments that had little benefit, I fell into a pit of depression, became isolated, morbidly obese, suffered from severe medication withdrawal caused by irresponsible doctors, and had constant anxiety and powerful panic attacks. I medicated with alcohol to numb the intense physical and mental pain, and had an awful diet. Within 5 years, I weighed around 340 pounds. I didn’t recognize myself. I was a stark contrast to the happy go lucky, 190-pound former athlete. Life was so brutal I almost ended it.

After years living in what seemed like hell, I knew I had to make a change or I would be sure to die. When I faced my self-destructive lifestyle (which I erroneously thought were good coping mechanisms… my denial was strong!!), as well as my life before and after it got flipped on its axis from dystonia, I realized that I was my worst enemy. I despised every aspect of my life. All I wanted was the life I once had. I was lost in grief for years and it kept making me more and more angry… and more and more sick. I finally realized that I had to stop grieving and change how I viewed my life before and after dystonia. I took some major, painful inventory and realized that I took everything prior to dystonia for granted. I never fully appreciated just how lucky I was to have so much and and be able to do so much. This is where the blessing came in and my life began to shift.

With my change in attitude, I realized that life was worth living. Or at least giving it a shot. I decided to fully dedicate myself to losing all the weight I gained and begin seeking anything and everything that provided me with symptom relief from chronic pain and dystonia. It was very painful to make the changes I did, but I knew I had to or I was sure to die or take my life. I clung to whatever gave me even an ounce of help. After amassing a pretty heavy toolbox full of symptom management protocols, I am doing better on a regular basis, but it is still a struggle. Symptoms of dystonia still plague me, but in different ways and not as severe thanks to my steadfast dedication to the many things I find helpful, way too long to list here (please see my book, Diagnosis Dystonia: Navigating the Journey).

While my life has changed because of dystonia, it wasn’t until I began to appreciate what I still had and could still do (as limited as it was and is) for me to begin to emotionally heal from many wounds I let dystonia and chronic pain inflict upon me, and have a life again. It took me a long time, but I have begun to rebuild many aspects of my life, replacing old things I used to do with new things that I enjoy just as much, if not more. The biggest difference is that I now have much greater appreciation for all I can do and all I have, even though in comparison it is far less in many ways than what I once had and could do prior to dystonia. Please don’t take anything I am saying as, “I changed my attitude and things got better.” That is and was only a small piece of the puzzle. I had to put in the work every single day, and still have to.

You make a life out of what you have, not what you’re missing.
~ Kate Morton ~

I have learned so much about so many things while living with chronic pain and dystonia: perseverance, patience, compassion, courage, strength, humility, and a never give up attitude. I have greater acceptance of my vulnerabilities and limitations, my relationships have been enhanced, I value everything and everyone more, I have more compassion for others, increased connection to others who suffer, a greater appreciation for life in general, not at all materialistic, better able to live in the present, and a deepening in spiritual beliefs. I always had these qualities, but now they are more prominent in my life. I hate dystonia and chronic pain, but I try to live in gratitude for what I currently have, no matter how little or how much. This was the missing link for me that makes coping so much easier.

I no longer compare my life before dystonia to my life now. I compare me at my very worst and how far I dug myself from that miserable hole. That is the only realistic focus I can and should have, and the perspective I think would be helpful for all of us to adopt. Otherwise it remains constant torture. Life before dystonia and chronic pain was easy and I took it for granted. My body worked just fine. Now it is a challenge, so to be able to get up and make the best life I can for myself is something to be honored. Even if I am in pain and something is difficult to do, I take pride in my efforts, knowing I did my best. This is something we all need to honor in ourselves, rather than beating ourselves up for what we can no longer do or how life used to be. That part of our lives is in the past. We have to let it go and take ownership of who we are now and pride in the things we push ourselves to do every day. If we can live every moment to the fullest and value all the people and things in our lives, right now, in this very moment, suffering can be greatly minimized.

Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone suffering with any life challenge. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for Chronic Illness Bloggers Network. To learn more about Tom and get a copy of his book, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.

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4 responses to “Life before and after chronic pain from dystonia changed my world”

  1. collettehurley says:

    Thank you again Tom for continuing to be a valuable inspiration. I was recently on a meditation retreat where I got a strong insight into my physical condition and my attitude to it. For me now it’s about acceptance. I am saying ‘yes’ to most things again and only pull out if really necessary. Today 4 of us went to a local beach by train and ferry. It was wonderful and my symptoms were low-level. Tonight, as I type, it’s a different story but I’m so happy that I DID the day. With all best wishes. Collette x

    • Tom Seaman says:

      So good to hear from you, Collette! The retreat sounds like a wonderful experience! I think addressing the mind/body connection is a must for so many who suffer, which I believe to be one of the biggest missing links in many of our lives. Good for you for going to the beach. I’m sorry there was in increase in symptoms later that night. I hope they have subsided. I think it is important for us to weight out the reward of the experience versus the kickback of symptoms, and to more often than not, be as involved as possible. Staying connected is such an important puzzle piece to our well being. Thanks very much for sharing your experience!

  2. Craig Kulonis says:

    Hi Tom,
    I woke up with lots of dread about living with dystonia. Nothing new really, but it seems at times overwhelming even though I have come a long way living for 42 years with this ailment. Your article was a good reminder not to give up hope. Waking up to a sore tight body can be very wearisome, but I need to try and be thankful with what I do have in my current life that are blessings. Thanks again for all the good you do for me and many others. Your efforts are not in vain! One day at a time, one step at a time.

    • Tom Seaman says:

      Hi Craig,
      I am so sorry you woke up feeling that way. I have had many mornings like that as well. Once I get moving and fill my day with things that I enjoy and get me excited, the dread diminishes. I then try to schedule the next day before I go to bed with things I look forward to doing, so the pain does not become the main focus, and even if it is that particular day, hopefully what I have planned for myself will distract me and overpower the pain. I’m really glad you found this article helpful. Keep taking those baby steps you and I have talked about many times, one moment, one day at a time. We can do this, especially with the support of each other.

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