After the diagnosis/Self harming thoughts

After being diagnosed with dystonia and learning it is not a temporary problem (or if you have lived with it for years and are feeling fed up), experiencing fear, anger, depression, and anxiety is normal. We not only experience the painful physical symptoms and the loss of competency, we have many questions.

How will it affect my life? Is it curable? Will it get worse? Will it get better? How is it treated? What will treatments cost? Do I have to take medication or have surgery? Will the pain ever go away? Will I have it the rest of my life? Is it all in my head? How did it happen? Was it my fault? Will I still be able to work? Will I be able to take care of my family?

The questions are endless and not all of them can be easily answered or answered at all. This can lead to panic and anxiety which will make symptoms worse, so please be careful. Seek answers one at a time so you are not overwhelmed trying to solve everything at once. Prioritize your concerns.

Developing a chronic condition is not like a sprained ankle or a case of the flu, both of which we heal from and return to normal. Chronic conditions are entirely different. They stay with us all day, every day, with no expected recovery time. Both mentally and physically, most of our energy is directed towards reducing symptoms and controlling panic about what it means for our future.

At my worst, my energy was strictly on how I could end the ridiculous pain. Literally, nothing else mattered. It was a very scary and confusing time for me because I felt so lost and alone. I kept telling myself to be patient; that I would find my bearings. Eventually I did, but not before other thoughts crept in.

Suicidal ideations

Dystonia cannot be wished away so a lot of us experience intense fear, anger, and sadness. Where anger and fear exist, anxiety, isolation, and depression often follow. Add physical pain and a sense of helplessness and life can lose all meaning. If these feelings persist, the most perverse thought one can have is suicide.

I thought about suicide. I no longer do, but when my pain was severe and my neck and back muscles would not stop contracting and twisting, it crossed my mind. I would say that I wanted to die, but I never talked about my actual suicidal thoughts with anyone. I was afraid. It seemed taboo.

I wish I did because I really needed some perspective about what I was feeling. There was no shame in feeling the way I did, but in the moment I was confused and afraid. I didn’t know who to talk to or what to say. Looking back, I could have talked to family members, friends, therapists, and others with dystonia. I now know that would have helped a lot!

Thoughts of self harm passed when I learned more about dystonia, treatment options, coping tools, stress management techniques, and finding out that there were others who felt just like me. I wasn't alone!

It also helped when I began to focus on the things I could do versus all I had lost. It took great mental fortitude to find meaning in my life, but I did and it grew as more time passed. There is meaning to your life as well, no matter how much suffering you experience. Please have faith and be patient with yourself!

If you have any thoughts of suicide, please speak to someone. It is not uncommon in the dystonia community to have these thoughts so please have the courage to speak about it, whether it be at your local support group or the many online support groups primarily found on Facebook. You will not only be doing yourself a big favor, but others as well by opening the door for them to feel comfortable talking about it. If you are in the United States, you can also call the National Suicide Prevention Lifeline (1-800-273-8255).

None of us are immune to the challenges of life. At some time or another we all endure tough experiences. When adversity comes, how we respond to it determines what happens next. Life experiences become tragedies if we make the conscious decision to make tragedies out of them. We can either resist or we can accept challenges. If we choose to view all challenges as opportunities for personal growth, they can be a driving force for positive changes.

Tips for dealing with your diagnosis:

• Research your area and surrounding areas for quality people who treat dystonia.

• Respect your dystonia and know your limitations. Learn to listen to your body.

• Educate yourself about dystonia as much as possible and become your own best health advocate.

• Understand that this journey requires trial and error, and patience.

• Trust that life will continue for you regardless of this challenge.

• Trust that you will get better if you are true to yourself and follow the treatment path that works best for you.

• Don’t make getting better your entire life’s mission to where you feel no other purpose.

• Stay connected and involved with family, friends, and community.

• Get involved with support groups. Seek help from others and learn how to help them as well. Helping others is a big part of healing.

• Stop asking "Why me?" and start asking "Why not me?" Opportunity lies in all good fortune and all misfortune.

• Spend time in prayer and meditation.

• Be kind to yourself and others.

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’s coaching practice and get a copy of his book, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram

Drink up for pain, inflammation, and weight loss!

People often ask what I eat since nutrition is very important to me, especially as it relates to helping control pain and other symptoms of dystonia. I also used to weigh well over 300 pounds so when people learn that I lost around 150 pounds, “how did you do it?” is a common question. Below are pictures with my nephew from 2006 and 2016. I shrunk and he grew! Frankly, I barely recognize the version of me on the left. It's as if that were a different life, one filled with deep emotional and physical pain from a life turned on its axis when dystonia enveloped my entire world.

In an attempt to keep this brief, I don’t want to go into great detail about everything I eat. More about my personal eating habits and nutrition as it relates to pain, dystonia, and weight management is in my book. For now I want to focus on two healthy drinks I have daily that I think will be of help, no matter your situation in life. One is a protein drink and the other is an anti-inflammatory drink. These drinks supplement my regular diet of food.

Every morning for breakfast I have a fruit smoothie protein drink. I want to stress “protein” because many people will have a fruit smoothie and leave out this vital ingredient. Protein is critical for keeping blood sugar stable, among many other functions.

This smoothie is easy to make, easy to drink, and easy to clean. From start to finish, I can be done with all of it in less than 15 minutes. I mention this because for many people who have chronic pain and/or dystonia and other movement disorders, preparing food, eating, and cleaning up can be a major challenge. For most people, this drink is an easy, healthy option. It is the main reason I began making it. The pain in my neck and back was too unbearable to prepare and eat anything else. I also had trouble swallowing food.

To make preparation even easier, you can put all your ingredients for one drink in separate bags and store them in the freezer. Just grab a bag, put the contents in your blender, add liquid, and away you go! See further below under the list of ingredients.

Ingredients

1 banana

10-12 oz. frozen berries (blueberries, blackberries, raspberries, cherries, strawberries)

20-30 raw almonds (I keep my almonds soaking in fresh water in the refrigerator. Soaking nuts, seeds, beans, and grains helps to release a substance called phytic acid, which blocks the absorption of essential minerals such as iron, zinc, calcium, and magnesium)

Protein powder (I like plant based protein powders so I use pea protein powder. I always use unflavored powders to ensure there is no added sugar or sweetener, but use whatever powder you like)

1-2 tablespoons chia seeds (Check them out! Chia seeds are a major superfood!)

1 teaspoon ground cinnamon (Cinnamon is an awesome anti-inflammatory, loaded with antioxidants, good for heart health, and helps regulate blood sugar, among many other things) 

Water (I use water to keep calories down and because I am not a dairy drinker)

Mix in blender, Nutri-Bullet, Ninja Blender, Vitamix, etc.

Pre-made smoothie bags

I have this drink for breakfast, but it is ideal for any meal or in between meals. It is filled with healthy protein, carbohydrate, fat, fiber, and antioxidants. It also has a low glycemic index and is low in calories. You can also make it and take it with you if you are a person on the go.

I call my other drink a “ginger/apple blast”, which I have during the day. I drink it for the anti-inflammatory properties found in ginger root. I add apple because of its health properties and I like the ginger/apple taste, but any fruit will do. I use spinach or kale to add more vitamins, minerals, and fiber to my diet.

Ingredients

Fresh ginger root sliced (about the size of a lime, which for some is a hefty amount, but use as much as you like per your taste)

1 small apple sliced

1 cup fresh spinach or kale

1/2 teaspoon ground cinnamon

Water

Mix in blender, Nutri-Bullet, Ninja Blender, Vitamix, etc.

Ginger is most well-known for stomach discomfort, but it is also one of the most powerful natural anti-inflammatory foods available. Ginger also has an anti-diabetic affect and cholesterol lowering properties, as well as many other health benefits. It also helps crave hunger. Turmeric/curcumin is another fantastic option, but my preference is ginger which is easier to find in most grocery stores.

As an example of the potency of ginger, years ago I had very bad knee pain from playing baseball in college. I was a catcher and developed tendonitis in both knees. I also broke both ankles twice. When I graduated, I had a desk job. Every time I got up I was in too much pain to walk upright until about the 10th step. Less than a month after having this drink every day, I was practically pain free and able to walk without a problem. I was amazed! When pain from dystonia set in a few years later, I knew I had to turn to ginger again and it has done wonders for my neck and back. I am not suggesting you will experience the same satisfaction, but please consider the possibility of this powerful food. It helps if your overall diet and lifestyle are healthy.

These are just 2 ideas among MANY healthy drink options, so choose ingredients you like best. The important thing to keep in mind is to eat healthy sources of protein and carbohydrate, healthy fat, fiber, and foods with a low glycemic index.

Happy drinking! Cheers! Salud! À votre santé! L'chaim! Prost Zum wohl! Na zdravi!

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’s coaching practice and get a copy of his book, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram

Our mind: As powerful as any drug

Did you know that we have chemicals in the brain as powerful as drugs for pain, depression, anxiety, and other conditions? Among them are neurotransmitters called endorphins, serotonin, oxytocin, and dopamine, which are often referred to as the "feel good" or "happy" chemicals. Let's play around with endorphins...the body's natural pain killer (our own private narcotic!). Endorphins affect us like codeine and morphine by blocking a cell's transmission of pain signals, but without the addiction. The word endorphin derives from two words - endogenous (from within) and morphine.

In addition to decreased feelings of pain, secretion of endorphins leads to feelings of euphoria, modulation of appetite, enhancement of the immune response, and fewer negative effects of stress. Endorphins are popularly associated with “runner’s high”, but no need to worry if you don’t run. There are numerous ways to increase production of these potent brain chemicals besides strenuous workouts. These include but are not limited to the following:

Massage

Acupuncture

A good movie

Prayer

Positive thinking/affirmations

Physical exercise

Music and dancing

Laughter (even fake laughter does the trick! The brain doesn’t know the difference between real or fake laughter. Even the anticipation of something funny releases endorphins)

Regular sleep/wake cycle

Shopping
Fun hobbies (arts and crafts, photography, beadwork, quilting, cooking, nature walks)

Quality time with family and friends

Sex (including cuddling, kissing, and holding hands with a romantic partner)

Good deeds (the flood of endorphins and serotonin caused by being generous has been called “helper’s high”)

Reading a good book

Meditation and controlled breathing exercises (breathe through your stomach; not your chest)

Being around animals

Sauna/hot tub

Biofeedback

Alcohol (light drinking; heavy drinking negates the effect)

Nutrition (anti-inflammatory foods)

Sunlight

Practically all of these things are at our disposal, so we should try and take advantage of them as much as we can. Not all of them will be of help (or interest) to everyone, but I wanted to share many of the options available to us. I also recognize that when in pain and feeling mentally down (I have been there!!), these things are not always easy to do or yield results the first or first few times doing them. If this is the case for you, maybe start with one thing you enjoy and do your best to make it part of your lifestyle.

Perhaps before starting there, practice the art of appreciation and gratitude. This is a great first step when we are suffering, most of which comes from expectation. Most of us have a blueprint for how life should be and when it isn't how we planned, it can cause depression. If this is the case, focus on something or someone you appreciate, do your best to sit with that feeling, and then move forward with hopefully more peace in your heart. Anything that gets us looking outward and/or releasing pent-up feelings has the potential of helping.

People often ask me the different ways I manage my chronic pain associated with dystonia, and I usually list many of these things. I can't say for sure how much they play a role, but when I did not do these things on a regular basis, pain was more severe. I was also depressed and anxiety ridden, a far cry from the person I was pre-dystonia, and a far cry from the person I am now, thanks to many of these things.

A fun fact to keep in mind is that neutral or positive sensory messages travel through the nervous system faster than painful messages. More specifically, soothing sensations travel up to seven times faster than sharp or burning pain. This means that if soothing sensations and painful sensations reach the “pain gate” to the brain at the same time, the pleasant sensations will prevail, blocking the slower, painful ones.¹ In other words, to reverse the course of pain and depression, it helps to do things that consistently provide reliable pleasant body experiences that compete successfully with pain (i.e., activities that produce endorphins, oxytocin, serotonin, and dopamine).

An easy way to remember how to harness the power of the brain's natural drugs is to live by the popular saying, "Sing like no one is listening, dance like nobody's watching, love like you've never been hurt, and live like it's heaven on earth."

In other words, have fun and do your best to not care so much what others think about you. Live your life on your terms. Never give up. Be patient with yourself. Never lose hope. Trust that everything will always work out. All of it is easier said than done, but when we get the "feel good" hormones flowing, nothing and no one can ever take away our peace of mind and body.

1) Phillips, M. (2007) Reversing Chronic Pain. North Atlantic Books: Berkeley, CA

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’s coaching practice and get a copy of his book, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram