My typical day managing my dystonia and chronic pain
I have lived with dystonia and chronic pain for 21 years. The first 5 of those years were the worst of my life. The pain from the involuntary muscle spasms was so bad that I could barely function. During that period of time, my day was pretty much as follows: wake up, eat breakfast (very quickly), lay on the floor and roll around to try and find some level of comfort while holding my head with both hands. I couldn’t tolerate sitting for more than 10 minutes. I only got up from the floor to go to the bathroom or get my next meal that I often brought to the floor, laying on my side sliding it into my mouth. After a full day of this I went to bed.
You can see in the photos below how my symptoms manifested. The pain in my skull, neck, and shoulders was immeasurable. If you look at the photo to the far right, you can see much improvement. Because of this, I often get the questions, “what did/do you do to get your neck straight? and “what is your typical day like?” I’ll do my best to summarize it in this blog, but my dystonia book is really the best place to get the nitty gritty because I do so much and have done so much over the years, all of which changes depending on my symptoms.
Before continuing, I want to say that what I have done to get to where I am today and what I do on a daily basis works for me. You may find other things that are beneficial for you. My way is no better than anyone else and I don’t want to substitute my opinion for what other people should be doing. I just want to share how I get through my day in case it might help others.
After about 5 years living the “floor life,” I began to learn a variety of symptom management tools that greatly improved my dystonia and pain over the years. While I benefitted a little from oral medications, I never benefited from Botox, which is probably the most common treatment for dystonia. I tried many times with no help. The foundation for my improvement that has been lasting, even though I still have symptoms (minor compared to what I described above), is movement therapy, much of which I learned from the ST Clinic in New Mexico and other things I implemented through years of trial and error. I use many self-care tools throughout the day such as massage machines, as well as actual massages from loved ones when I am able, trigger point tools, ice, heat, PEMF machines, TENS units, abdominal work, dancing, swimming, nutrition, topical lotions, GABA, nutritional supplements and natural anti-inflammatory botanicals like ginger root, meditation, sleep and plenty of rest during the day.
I also take care of the emotional side with healthy relationships, stress management, not being so hard on myself, setting boundaries and saying “no” without guilt, confronting and overcoming anxiety and depression, finding meaningful activities, breathing and mindfulness activities, music, hobbies, taking on projects to feel a sense of accomplishment, relationships that make me laugh, but are also deeper than surface level, and most importantly, how I think about things and process life events.
When I get up in the morning, the first thing I do to loosen up my neck and back is lay on an upper body aromatherapy heat pack for about 15 minutes that I pop into the microwave. After breakfast (always a fruit/protein smoothie because it is so easy to make and clean up, which is neck friendly as well as healthy (click here for the recipe), I use my massage machine on my back and neck for 10-20 minutes. Then I usually spend a couple hours doing work which might include writing, talking to coaching clients on the phone or video, answering emails, communicating with others in various support groups, and working on different projects.
I like to limit the amount of hours I am at my computer to no more than two at a time. Preferably one hour and then take a break and do a few stretches and maybe some light exercising. If I have more work I want to get done, I will return to my computer. If not, I will try and get out in nature which might include a walk or laying down by the community pool or if I’m really feeling up to it, heading over to the beach which is not too far away, or to a park.
During this time, I like to relax and focus on my breathing and visualization and muscle relaxation practices. I try to schedule this into my day, every day. Sometimes more than one time a day depending on how I’m feeling. How I am feeling is often what directs my day. I have to check in with myself and see what it is that my body needs so I can be as functional as possible. So, some days I might be working more or being more active, and other days I might be resting and relaxing my muscles and doing mindfulness activities more. I try to keep a nice balance the best I can.
Sometimes I push myself too much and reach a point where I can’t do anything more so I have to lay down and rest and relax to reduce pain and muscles contractions. I prefer to schedule my resting and mindfulness activities rather than my body forcing me to do it because I mindlessly pushed myself too much. Doing “nothing” was something I struggled with for a while, but now I know how essential it is for me, so the guilt is gone. Interestingly, what I found is that it is during these periods of time when I am most productive because when my mind is relaxing, all of the ideas for all of the work I do come to me. So now I call it purposeful resting.
After dinner I will either run some errands, visit with family and friends, do some projects around the house, which is typically something creative. Then I will lay on ice while I am reading or working on my computer. Not always because I’m in pain or having dystonia symptoms. I do it more as a preventive measure oftentimes to keep the inflammation down. It’s a very quiet, relaxing time for me, while I am also able to get work done. I have a special laptop holder that is designed to keep my body in good posture while laying down so I can work. I will then lay on heat (aromatherapy pack) after I ice. I will then usually watch some television before bed. Sometimes I do some more stretching or massage work or other neck and back therapy things in the evening while I’m watching TV. I like to break up my day with work, resting my muscles, doing fun things, and having downtime. I love the sound of silence and being outdoors as much as possible. In the warm months, I go for a short walk around my neighborhood in the evening before bed.
Working on my posture and daily habits have become so automatic for me from so many years of practice, but I always keep in mind the following phrase, “straight, upright, and centered.” This keeps me mindful of my body position during all activities. For example, I set up my workstation to be as ergonomic as possible where I am not putting any stress on my neck or my back (you can click here to read more about this and see my work station). I use a special back support that promotes good posture. I take photographs so I can get feedback to make modifications. I also have a special laptop holder I use when I’m laying down doing work, which I mentioned above. I’m mindful of the position I lay down which is always on my back, as well as the position I sleep, which is also on my back unless my body decides to turn to the side while I am sleeping. Laying on my back helps me maintain good posture. I also use trigger point therapy tools throughout the day, as well as a PEMF device call Oska Pulse.
In order for me to effectively manage my symptoms, I am consistent with everything that helps me, every single day. That’s something I think a lot of people misunderstand about dealing with any kind of health condition. It often requires it to become a lifestyle, which it has for me and has proven to be very helpful. Feeding my mind and body with healthy things, coping well emotionally and managing stress, good balance to my days, and keeping a positive outlook are all a part of this lifestyle, and again, consistency is the key!
I am not cured as some people think because of how my neck has straightened (I still have pain and muscle contractions – just not as severe – and I have scoliosis and damage to my vertebrae from all the compensating my body is doing to keep straight). I just work hard every day doing a lot of self-care activities that are targeted partially at my specific dystonia symptoms, but mostly at the overall health of both mind and body. It’s also important to mention that I don’t spend my entire day thinking about my dystonia and pain. I live as much of my day as possible thinking nothing is wrong with me so I can prevent myself from living in protection mode.
I hope some of the information about my typical day is useful for you. For a lot of other ideas and strategies to help manage your symptoms, please check out my book, Diagnosis Dystonia: Navigating the Journey. Please also check out my new book for additional ideas. I am very proud of this new publication, called Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.
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 Network, The Mighty, Patient 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.
Haven’t you considered Brain stimulation operation.
I have not and have no reason to. That for me would be a past ditch effort.
Auch ich wäre froh,wenn das Buch einmal auf deutsch erscheinen würde,da mein Englisch nicht reicht,um es zu lesen.Besonders würde mich interessieren,ob auch etwas über denTremor drinsteht.Mein Kopf zieht nach links und ich habe einen starken Tremor
Hi Gabriele- Vielen Dank für Ihr Interesse an meinem Buch. Es wird zwar Zittern erwähnt, aber es ist kein Behandlungsbuch. Während es viele Behandlungsmöglichkeiten bietet, liegt sein Hauptaugenmerk darauf, Menschen Strategien für das tägliche Leben mit Dystonie und all die damit verbundenen Herausforderungen beizubringen.
ich lese Ihre Artikel sehr gerne weil ich viel von meinem Torticollis darin wiederfinde.
Nun hätte ich eine Frage: Wird es Ihr Buch irgendwann auch mal im Deutsch geben? Mein Englisch ist leider nicht so gut, dass ich ein ganzes Buch lesen könnte.
Viele Grüße aus Deutschland und vielen Dank für Ihre Arbeit.
Hi Petra- Ich freue mich zu hören, dass Ihnen meine Artikel gefallen. Danke. In Bezug auf mein Buch wird es leider nur auf Englisch sein, es sei denn, mein Budget erhöht sich und ich kann mir die Kosten für die Übersetzung leisten.
Great article on how you navigate your journey! Might be a good title for a book. Haha. Your honesty shines through when you write and is an encouragement to all of us walking through this journey with dystonia. Stay well.
Hi Craig. Great to hear from you! Thanks for all you said and I’ll think about that book title 😉 I hope you have been doing well!
Great article as always! It’s very nice of you to share these experience and helpful tips. All of these, along with those mentioned in your book, are super encouraging and motivating to people going through similar journeys!
Thanks very much Kevin! I appreciate hearing that this information was helpful and encouraging. Wishing you and your Mom all the best!
Hi Tom, Once again, great info here. I have a hard time sleeping on my back because when I do, my nect pulls to the left – did you have issues with this at all and if so how did you overcome them to be able to sleep on your back? Thanks, Debbie
Hey Deb! Thanks so much! I understand the challenge of sleeping on your back. It took me about a year of practice to get comfortable like that. What helped me most was practicing laying down on my back during the day. I also used a gravity/inversion table that helped. I have a section in my book called Inversion Therapy that talks about this and shows pictures of how my neck was when I lay on my back and then how it improved. It is in Chapter 15. I hope the info helps!
Tom this is so interesting to read and helpful . I’ve often wondered how others with ST get through their day . Can I ask you what massage machine you use ? Do you do light weight work anymore or just stretches ?
I do a lot of my computer work lying down and recently invested in a SYB ( save your body ) protection board as I’ve been concerned about my organs getting lengthy emf exposure in this position .
Really looking forward to reading your new book !
Hi Helen and thanks for the feedback. I use a massage machine called Kneading Fingers. I still do some stretches, but not as much as I did when my symptoms were more severe. I still do light weights but prefer more dynamic exercise in a pool, for example. I have not heard of SYB. Thanks for mentioning it. I am going to check it out!