What Is ST? Living with ST

Finding Your Road to Happiness!

Many of us have difficulty explaining ST to others. How do we explain it? How do we explain pain? How do we explain the power of pain? How do we explain the pressure in our heads or the burning sensations? How can we look OK one minute and then twisted up the next? Many of us have been accused of "faking it". We're certainly not doing that!

Living your life

How are you living your life now that you have Spasmodic Torticollis? Has it, literally, stopped you? Put you on hold?

It doesn't have to. You may think you won't be able to do all those "fun" things you used to do, and, while this might happen, it isn't necessarily true. Certainly, there will be some things you may not be able to do, or do to the degree that you used to, but there are still many things, many other things you still can do.

Think of three things you like to do that make you the happiest. Are you physically able to do them? If not, what are three things that you can do that can make you happy? Write them down on a separate sheet of paper. Now, think about the last time you did each one of them. Was it a week ago? Month ago? Year ago? Beneath each favorite thing, put how long it's been since you've done it. What does this information tell you about how you're living your life? Did you have trouble thinking of even one favorite thing? Are you doing the things you like to do in your life?

  1. You cannot control the external circumstances of your life, but you can control your reactions to them.
    1. Accept yourself as you are!!!! Acceptance actually means knowing yourself as you are now. And, remember that the acceptance of ST begins with accepting yourself as the lovable person you are. Torticollis cannot change the real you.
    2. Put yourself number one in life. As you awake each morning repeat to yourself that you are great; that you are positive; that you are wonderful; that you are intelligent; that you are empathetic; that you have a healthy self-esteem; that you can do anything YOU WANT TO DO. Do a chant, "I'm alive, I'm awake and I feel great!" You are in charge of your thoughts.
    3. Relax yourself. Practice yoga or diaphragmatic breathing; keep repeating and repeating and repeating. Practice makes perfect.
    4. Exercise. Yes, as part of your daily goals program, or at least 3 times a week, do some exercise. Do whatever you can. It's better to do something rather than nothing. It might be some simple stretching exercises, or some water exercises. Keep your muscles toned. Of course, as with any new exercise program, consult your doctor.
    5. Eating.This can be a big part of your daily life. Learn to eat consciously and nutritionally. Avoid those foods that stimulate the nerves. Caffeine, sugar, chocolates, or whatever can sometimes activate the symptoms of Torticollis. Drink plenty of water. It not only flushes out the poisons in your body but provides you with lots of energy. In taking care of your body you will be creating a much fresher and positive mind.
    6. Practice thinking of yourself as a healthy person. Are you a healthy person with Spasmodic Torticollis or an unhealthy person with Spasmodic Torticollis?
  2. Things change. People change. Our lives change. The only thing permanent in life is change. Your life with ST has changed you but it's not over. It's only beginning. It's the dawn of a new era. It's the first day of the rest of your life. After the acceptance of ST, which is your most important first step, you will have other options leading you down the path towards overcoming ST. Your life definitely will be different with ST. Always remember though, that you will still be able to live a full life albeit in a different fashion.
    1. You will have to learn what situations will be different for you and try to avoid them. For example, instead of going shopping at the peak hours, go when the crowds are way less. Don't think of these types of things as a defeat, but rather, as a change, a change we talked about. STRESS PLAYS A HUGE ROLE IN OUR LIVES. IT EXACERBATES THE SYMPTOMS OF ST.
    2. Or confront the stress, the fear and the doubt that comes with Torticollis. Challenge the emotions; learn to identify them; and learn to transform them. For example, you may not want to go someplace because you believe people will look at you. How will you know if they're looking at you if you don't look at them? And, even if you see them looking at you it may not be at all because of the Torticollis. People, generally, are people-watchers. Aren't we, also? And, besides, even if they are, chances are they will forget about you in 10 seconds when they will be looking at someone else. Confront the fear and it will lessen the stress, which will, in turn, lessen the symptoms of ST.
    3. Those fears that are faced and/or challenged lead to a positive transformation in attitudes. You will find a surge of new-found self-worth; of being in control; of having a much greater inner strength. The stronger your sense of self-worth, the more confidence you will have in yourself.
    4. Learn to live LIFE to the fullest. Commit yourself to it. As you go about your daily duties, smile, hum to yourself, think pleasant and happy thoughts, put humor in your life - laugh - a lot and do things that will be positive and relaxing.
  3. Above all, be patient with yourself. Don't give up easily. Rome wasn't built in a day. Changes take practice - lots of it. No one ever got anywhere without practice and without giving themselves time. The person who gets ahead is not necessarily the smartest person; rather, it's the person who practices and practices. Repetition is the best teacher.
  4. And, above all, LOVE yourself. ST cannot change that. Love is the greatest commodity we have. Love yourself and others and give of yourself to others. Get involved with others; help others; do things for others. It will take your mind away from yours. The worst thing you can do is dwell on yourself.
  5. Finally, from all of us at ST/Dystonia, GOOD LUCK.
Remember... You can have that better life and you don't have to feel alone anymore!