Losing weight while living with chronic pain
It was Summer 2001 and life was great! Awesome friends, a partner in a successful company, pursuing my Master’s degree in counselling, playing sports, and travelling.
I was living a good life and things were going as planned, until I noticed changes in my body; stiffness and pain in my neck, involuntary movements, and trouble with my balance.
I saw many doctors over the course of a year before being diagnosed with dystonia.
Dystonia is a neurological movement disorder that causes muscles to involuntarily contract, producing painful, awkward movements and postures (imagine the pain of a Charley horse that never goes away).
Dystonia can affect any part of the body. In my case, the neck and back are affected. Performing everyday tasks such as sitting, standing, walking, driving, shaving, brushing my teeth, combing my hair, eating, talking on the phone, etc., became almost impossible.
Currently there is no known cause or cure for dystonia in most cases.
Dystonia completely changed my life.
By the time I was properly diagnosed, I was in such extreme pain and disfigurement that I was pretty much unable to do anything on my own.
From the forceful muscle contractions in my neck, my head and neck were stuck in a turned position and pulling towards my right shoulder, which significantly worsened with any type of movement because of the intense spasms.
I literally lived on my floor for years because it was too painful to sit or stand. It was pain unlike anything I knew existed.
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.
The transition from an active, independent person to a disabled person almost completely dependent on others was devastating. I was only 30 years old at the time.
After many treatments that had little benefit, I fell into a pit of depression, became isolated, and experienced powerful anxiety and 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 330 pounds. I didn’t recognize myself. I was a stark contrast to the happy go lucky, 180-pound former athlete. Life was so brutal I almost ended it.
Tom’s Weight Loss Journey Begins
In December 2006, I caught a stomach virus. During that time, I lost about 15 pounds.
While getting sick was not the type of motivation to change I would have chosen, it was exactly what I needed to start putting my life back together. It was a window of opportunity I knew I had to jump through. If I didn’t, I would have fallen back into an even darker hole where I was sure to have died or killed myself.
At around 330 pounds and in severe pain, I was that lost. However, I am a fighter and I still had a flicker of light in me. I told myself what Andy Dufresne said in the movie, The Shawshank Redemption: “Get busy living or get busy dying.” I chose to get busy living!
After losing those 15 pounds while I was sick, I wanted to keep that trend, so I changed my diet and began exercising (for weight loss and better dystonia symptom management). I changed what I ate, I cut back on the amount of food I ate, and I walked every day. No special diet, diet pills, drinks, or any unique exercise program. I just completely dedicated myself to eating well and walking every day.
I started out by walking to the end of my driveway and back. I slowly increased this distance every week until I could walk about 2 miles twice a day. When I initially began losing weight, I set a goal of being 250 pounds within 8 months.
I hit this goal in 5 months, and at 10 months, I was down to 200 pounds. This is only 10-20 pounds more than what I weighed before I was diagnosed with dystonia over 5 years prior. I currently weigh between 185-190 pounds. As crazy as it sounds, I lost 150 pounds within a year.
My diet primarily consists of an abundance of fresh fruits and vegetables, lean meats, fish, and raw nuts. I do not eat grains, pasta, bread, cereal, crackers, chips, desserts, fried or processed foods, sugar or sugar substitutes, and all I drink is water.
This may sound boring, but I make delicious meals, smoothies, and snacks, and have no cravings for anything except to satisfy my hunger. Most importantly, I respect the feelings of fullness so I do not overeat.
What I eat is close to a Paleo Diet, but I prefer to call it a lifestyle instead of a diet.
The distinctions between diet (temporary) vs. lifestyle (long term) are very important. Calling what we eat a “diet” often conjures up all sorts of expectations, which are often self-defeating and result in failure. We need to use terminology that triggers the right attitude towards food. This will help us better understand what we choose to eat and why we choose to eat what we do.
My approach towards food, along with moderate daily exercise, is such that weight is no longer an issue and my dystonia symptoms are better managed.
People often say to me that I must have a much better attitude now that I’ve lost all the weight. My response is typically, “Getting a better attitude is what motivated me lose the weight.”
I don't have a better attitude because I lost weight, Getting a better attitude is what motivated me lose the weight! via @Dystoniabook1 Click To Tweet
Don’t get me wrong; my attitude now is certainly much better and I absolutely feel better, but had my attitude not changed prior I never would have taken the steps to lose the weight and gain better control of my chronic pain from dystonia.
People too often look at this concept backwards. Mental change must occur before action can take place to yield measurable, sustainable results.
Making that change is all about finding meaning and purpose. Mine was two-fold. I was embarrassed at how I looked because of my twisted neck and morbid obesity, and I wanted to reduce my weight to eliminate chances of developing other health problems.
To put it simply, I didn’t want to suffer anymore. I also felt there was an important reason I got so sick, which I later found out was to learn new things about myself so I could grow mentally, emotionally, and spiritually, and to help others who were suffering.
Positive mental change must occur before you can make physical changes. It's about finding meaning & purpose. via @Dystoniabook1 Click To Tweet
One of my main motivators is to never forget the feeling of being so sick, and to be grateful for the state of health I have achieved. I still have a long way to go, so I do my best to appreciate what I can do each day, and do it with passion so I stay on a good path.
The reason it took so long to begin exercising more control over my life was that I viewed myself as a victim. I was angry, bitter, and resentful for getting sick. I basically gave up and let my chronic pain control me, whereas now, I don’t consider myself a victim of anything, except what I create in my mind.
I still have problems with my neck and back (there is currently no cure for dystonia), but it is night and day compared to the torture I once lived. No longer living in the darkness of despair where I didn’t want to wake up in the morning to face the constant physical and mental pain, my life is filled with joy and passion.
My experiences led me back to school in 2012 where I became certified as a life coach so I could help others with their challenges.
In 2015, I published my book, Diagnosis Dystonia: Navigating the Journey, which was recognized by the Michael J. Fox Foundation. This combination autobiography, self-help, education book provides treatment options, coping strategies, skills for daily living, and tools for dealing with the physical and mental challenges of life with any chronic health condition.
I wrote this book to give others hope and inspiration, as well as guidance for how to better cope with life altering events, health or otherwise.
I have been faced with major challenges throughout my adult life. What helps me jump over hurdles is my belief that everything has a solution. via @dystoniabook1 Click To Tweet
I have been faced with major challenges throughout my adult life. What helps me jump over hurdles is my belief that everything has a solution.
There is nothing that can’t be altered to improve our quality of life. Obstacles provide us with opportunities to grow and become better people, and every day I am grateful for the chance to help myself and others achieve their personal best.
My message to anyone facing a difficult health condition or other obstacle: you are not alone, hope never dies, and every single day is an opportunity to get better. Believe in yourself and never give up, always trusting the strength you have within.you are not alone, hope never dies, and every single day is an opportunity to get better. Believe in yourself and never give up, always trusting the strength you have within. via @dystoniabook Click To Tweet
Tom Seaman is a chronic pain and dystonia awareness advocate, health blogger, motivational speaker, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone living with any life challenge. He is also a Certified Professional Life Coach in the area of health and wellness. Tom volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, WEGO Health as a patient expert panelist, and Chronic Illness Bloggers network.