Striving to find balance when in pain and everything feels off balance

February 3, 2022

I am always striving to find balance in my life, as I know most people are. Because my neck is off-center from a neurological movement disorder called dystonia, it throws my shoulders off which throws my hips off, and I have scoliosis which complicates all of this, so at any one time I might be having problems with my neck, shoulders, back, or hips. Sometimes when one of those body parts is bothering me everything else is working pretty well, and sometimes they are all bothering me. My body often feels unstable like a half played game of Jenga. If you are reading this and don’t have a health condition to deal with, the information forthcoming is still applicable because I’m sure you have your own life challenges where you are trying to find balance.

I also have a problem with my ear called tonic tensor tympani syndrome, also known as middle ear myoclonus. This is probably one of the most debilitating things I deal with when it is flared up. It gives me the sensation of a butterfly flapping its wings in my ear along with terrible balance problems which prevents me from doing so many things. This is accompanied by hyperacusis, where the ears are overly sensitive to everyday sounds, and many noises are unbearable and painfully loud. I can’t recall a day in the last 20 years after being diagnosed with dystonia when one or more of these symptoms has not been nagging at me in one way or another. I feel like a ping-pong ball. I get hit and then feel decent for a little while, only to be quickly smacked again back in the other direction. There is little time in between smacks that I have a brief respite of manageable symptoms.

Tiring and frustrating are understatements, especially trying to balance the rest of the tough things like throws at us unrelated to our health. After much experience, I know that I/we need to keep stress levels down and be as even keeled as possible. If I were to react emotionally to all of my challenges, I would absolutely lose my mind and have no life whatsoever because every symptom would get flared up even more. Instead, I have had to come to terms with and learn how to live with the unpredictable challenges I deal with from hour to hour every single day. And this is the challenge for all of us, whether you have a health condition or not. We all have issues that we have to contend with every day.

I can’t speak for anyone else, but I can look at my life as a nonstop rainstorm or choose to dance in the rain. It has taken me a while to get there, but I have chosen to dance in the rain the best I possibly can every single day, with loving kindness towards myself, understanding that I did nothing to cause what is going on and that the only thing I can control is my response to what is happening. I encourage you try to do the same.

I know how hard it is and I still fail miserably at times by pushing myself and being too hard on myself, but I know adversity will be a life long companion, even if I were completely healed tomorrow. Other life challenges will present themselves where I know I need to apply the same approach of emotional control and stress management. Life is a game that is really just a series of days of practice sessions for the next day.

Life is a game that is really just a series of days of practice sessions for the next day Click To Tweet

I think every situation, both good and bad, provides us with an opportunity to learn something about ourselves, others, and life. There is no linear path that we follow throughout life. We have to follow the path that we choose and learn to be more flexible with the unpredictability of that path. Please see my new book, Beyond Pain and Suffering: Adapting to Adversities and Life Challenges, for much more on these topics.

Below are some things we can do when the stress of life gets to be too much. They are things that can and should be practiced on a regular basis to disengage and recalibrate the stress response. If you follow my blogs, you may have seen a similar list before.

– Allow time to pass. When we stress, everything can feel like an emergency. This is called anxious arousal, which is temporary if we don’t add an emotion to the stressful event. Every feeling of panic comes to an end, every concern wears itself out, and every so-called emergency evaporates.
– Conscious diaphragmatic breathing and progressive muscle relaxation.
– When you are rushed say, “There is plenty of time. Stay calm.”
– Talk to family, friends, therapist, life coach, and/or support group about the situations you find stressful.
– Listen to music.
– Keep a journal.
– Spend time in prayer and meditation.
– Eat a balanced diet of healthy carbohydrates, proteins, and fats. Avoid sugar, caffeine, and white flour products.
– Exercise if you can; modify activities to accommodate your symptoms and ability level.
– Laugh as much as you can. Even if it is fake laughter. The brain doesn’t know the difference.
– Avoid isolation. When we lose connection with others it can intensify stress, as well as depression, loneliness, fear, and anger.
– Accept help when it is offered and ask for help when you need it.
– Get outdoors and spend time in nature; it can be very grounding.
– Do not argue about things that are unproductive.
– Avoid people and things that trigger your stress, when possible.
– Don’t waste time worrying about what could have been. The past is over. Focus on the present moment.
– Simplify your goals and make them attainable.
– Engage in fun, pleasurable activities as much as possible. Make that a goal every day. Every day I schedule something I enjoy doing and make a point of finding time to do it.

We must learn to roll with the tough parts of life rather than fight against them. In other words, it is not what happens to us that matters most. It is what we do about it that matters most, which dictates how much we can increase or decrease the difficult parts of life.

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 NetworkThe MightyPatient 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.

 

 

 

 

 

 

 

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18 responses to “Striving to find balance when in pain and everything feels off balance”

  1. George Scott says:

    Hello Tom, another great blog entry, very helpful. Are your books avail. in audio, my eyesight is declining.
    Thanks again for your very insightful advice, I’ve found myself looking at things differently.

    • Tom Seaman says:

      Thanks George. I appreciate it. Unfortunately I do not have audio versions of the books. I am not able to afford it. I did add audio to all of my blogs, so I hope that helps.

  2. Robert Goodwin says:

    Great message Tom. I’m coming off about 7-8 weeks of decent relief post xeomin injections. A month to go to the next round. Things change quickly. Lots of aches, pains, pulling all over. Try to keep busy as best I can as keeping engaged physically and mentally seems to work best for me. Sometimes though it’s tough. Thanks for sharing your life- the good and not so good. Hang tough

    • Tom Seaman says:

      Hi Robert- Thanks very much about the article. I am very pleased to hear that the Xeomin is effective for at least 2/3 the time between treatments. It is amazing though how things can change in an instant from good to bad. You also please keep hanging tough!

  3. Katie Lark says:

    I appreciate the metaphor, I can see my life as a constant barrage of rain storms to cower from, or I can choose to dance in the rain. I’m choosing to dance. I believe the more that I do this, the more my nervous system calms down (see Dr. Howard Schubiner -unldrn your pain). I looked up MEM. It sounds a lot like what I experience, but I’ve been diagnosed with Pulsitile Tinnitus. An MRI found Fibromuscular Dysplasia in both carotid arteries.

    • Tom Seaman says:

      Hi Katie- Thanks for the comment and mention of Dr. Schubiner. I will check him out. I will also look into Pulsitile Tinnitus. How is that being treated?

  4. Rhoda says:

    Your advice is always inspiring and priceless. Something that has always helped me is reminding myself that everything is temporary. For example, I may be experiencing a lot of discomfort now, but possibly in a few hours I’ll feel better. Everything changes.

    • Tom Seaman says:

      Thank you Rhoda. That is very nice of you and I really appreciate your attitude. I think if we dwell on what is wrong for too long, we can get lost in the difficult times with less hope for getting out of it or that better times are ahead.

  5. Ralph says:

    I am 70 y ears old. I’ve had dystonia for 64 years. CD 32 years. Trouble sleeping. You mentioned you take baclofen. Been taking 10mg to help me sleep at night. Worked for 1st couple of months. Not working after several months. Any ideas. Thank You .

    • Tom Seaman says:

      Hi Ralph, I am not a doctor so I can’t really comment on medications, so you should consider discussing a change in dosage with your doctor or perhaps something else for sleep. Modifying your bedtime routine might also be something to play around with.

  6. Gloria Pellegrino says:

    Tom, God has use you to reach out and touched more people than you will ever know. Thank you.

  7. Theresa Strode says:

    All this is very useful, but for me personally I find every day to much as a challenge as being alone. It has been 5 years since my husband has passed and each day I feel the pain. Thanks for listening

    • Tom Seaman says:

      I am very sorry for the loss of your husband. That is void is one that cannot be filled. I hope you feel that he is always with you in your heart.

  8. JOANN KROHN says:

    Yes I keep trying to feel better and do the best I can to help relax and make me feel better. Keep trying don’t give up. Very true what you wrote.❤️🙏🏼😍

  9. Lynne Yurgel says:

    Tom: Your messages always seem to arrive during one of my bad days . Thank you so much for the uplifting advice. It is a work in progress and i find your books so helpful. Wishing you the very best in 2022, Thank you again for all your help.

    • Tom Seaman says:

      I am very sorry you have had a bad day, but grateful that a little of my sharing could make it a little bit better. I hope you have a better tomorrow, but if not, please reach out if you need to chat.

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