Self-nurturing for better health: My recovery from a recent breakdown
As many of you know reading this, I have lived with a chronic neurological movement disorder called dystonia, as well as chronic pain, for over 20 years. I use many things to help manage my symptoms and have created a lifestyle for myself to function as well as I can to live a joyful life. One of my many self-care tools is finding peace and quiet and silence and solitude in our noisy world. I spent many years creating a life for myself where this need is met every day.
Recently, however, I allowed a lot of this to be taken from me. I say, “allowed,” because no one or no thing is allowed into my space and take anything from me unless I give it permission, and that is exactly what I did, so I take full responsibility. Taking responsibility for things is also a very important coping tool so I don’t allow myself to become a victim of circumstances or the behavior of other people. Taking responsibility for my falls in life are also helpful for getting up from the ground and rebuilding.
Certain circumstances occurred in the past few months that I would like to say were beyond my control, but I can’t, because as mentioned, only we are responsible for what we allow into our lives. My personal space was throttled and my peace was allowed to be taken from me; the peace I have worked so hard to create. It impacted me to such a degree that I was sleeping maybe about 3 hours a night if that, I was waking up with full body spasms and contractions with sweaty shakes as if I had the flu, and I had a constant racing mind.
I was exhausted but because my pain went through the roof, my adrenaline went through the roof, and I was not able to relax my body. I spent parts of many days broken down in tears doing anything and everything I know how to get through my day without falling further into the abyss. I would see a glimmer of hope here and there, but then the simplest thing would bring me back down again.
It is my nature to passionately live life and this past month I lived it so passionately that it took me down to where I could barely function. I was moving about on fumes, just getting through what I needed to, and then I was wiped out. Too many hits were coming at me at once from different directions and my sensitive nervous couldn’t handle it. It was like a great white shark all of a sudden appeared from the depths and breached the ocean’s surface. I had to turn off all outside noise from things that cause me stress and slowly and thoughtfully and carefully move about my day.
I felt like I went on a binge drinking session for about a month while metaphorically not ever taking a shower or shaving or washing my hair. I felt dirty inside and out. I needed to somehow cleanse myself of these circumstances and get back to the life I have so carefully put together to keep me as healthy as possible.
Dizzy and confused with frustration, I began to look within to find my peace again. Understanding the power of the mind and body connection, this reaffirmed for me just how important it is to create peace and silence in my life and that I need to nurture my sensitive nature regardless of what anybody else on the planet thinks about the decisions that I need to make.
This recent emotional fall, so to speak, was actually something I’m incredibly thankful for and ironically, I wrote this on Thanksgiving day. Various situations that presented themselves over the past few months, but more so in the last 2 weeks, made me turn more to my faith, read more insightful books and quotes and passages, pay closer attention to my body in a thoughtful way, slow down, retreat to rest and recuperate, and set up boundaries for me to heal.
I have had to live with this horrible health condition called dystonia for over 20 years and I have worked my tail off to get as healthy as possible to live as fulfilling a life as I can for myself and others, that I do all I can to let anything or anyone bring me down. I’m sure I will be broken down again in the future and that’s okay. Every time it happens I learn something new about myself and I find myself going deeper and connecting in a better way to what is most important to me in my life.
I know that my peace can be disturbed at any time, but hopefully next time after this experience I will be better prepared. I also know that life will not always be lived on my terms, but this experience taught me to be less vulnerable so I don’t live it on someone else’s terms, which is what I was doing with several people.
I’ve always known that I am a sensitive person that is deeply caring and is deeply impacted by the energy of others. I wouldn’t necessarily consider myself an empath, but I definitely border on one. Unless you are an empath or close to one, or an HSP (Highly Sensitive Person) you would probably not understand the gravity of what we go through. I actually know this to be true because when I share things with people who do not have a similar nature, they don’t understand. Which is fine. We are all wired differently. If you want to learn more about the HSP personality, please click here to read a blog I wrote about it. To read more in depth information on this topic, please see my book.
Here is an idea for what I/we experience. We can see things that others can’t see. We can feel things others can’t feel. We have a sensitive nervous system that makes it harder to filter out stimuli (sounds, lights, smells, crowds, etc.). We are aware of subtleties in our surroundings, more easily overwhelmed in a highly stimulating environment, and more in tune with the feelings of others. We get overwhelmed at large gatherings, want and need to spend quiet time alone, experience deep empathy for others, and sometimes struggle with feelings of anxiety and/or depression.
Given all of these attributes, it is no wonder I was so overwhelmed recently. What I didn’t realize in the moment was just how much everything was impacting me until I reached a breaking point. Being more aware going forward is now more on the forefront of my mind. In other words, practicing mindfulness and being more self-aware.
I share many personal things like this publicly because our innermost thoughts sometimes feel as if we are alone in our suffering that many of us don’t share them for fear of scrutiny. Much of this I do in my two books: Diagnosis Dystonia: Navigating the Journey and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. I feel it’s important to share my experiences and feelings because I know others may experience some of the same which I hope provides them with comfort knowing that somebody out here does understand. This may not the process for others, which is totally fine. We do what we feel is right for us. For me, I turn to writing, and I hope what I have written here has been of help to you.
If you are going through anything similar to what I described where your peace has been disturbed, please take time to find what you need in this moment right now. Let the next moment happen when it gets here and then decide what you need in that moment. Be good to yourself. Understand that there is nothing wrong and no need for guilt to take “you time.” Use prayer, affirmations, meditation, exercise, therapy, sleep, tears, laughter, distraction, silence, nature, breathing, binge watching television, journaling, time with friends, or whatever you personally need to find your way again. I did what I needed to find my way again, and I am happy to say that I found my smile and laugh and passions again.
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 and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. 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 volunteer writer for Chronic Illness Bloggers Network, The Mighty, and Patient Worthy. 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.
TOM, Tom, Tom! Tons of love & empathy sent your’ way! Again, you explain me to me✌️♥️
The hypersensitive Personality blog & this! Tom knows but I am sharing how important Tom is. I did so many healthy things & alternative treatments in 5-6 years that my CD of 23 years was an annoyance w Botox every 3 months. In 2020!, my dystonia started spreading. I got little care or comfort from my Dt’s…. Patient portal & pandemic! I hung in there a long time until I didn’t! I was totally disabled & went through above. By the grace of God & doing much of what you are doing to get your’ homeostasis back, I’m doing fantastic. Tom… better than ever. God bless & prayers
I am exactly at the same point now, as where you are.
I have to learn to set boundaries now, because others , my family and friends,from who i thought they were friends…they did the same… i feel exhausted and i can’t hold my tears, while reading this. I was always busy listening to other people’s problems and trying to help… Also trying to forget my dystonia in the neck and i have it in my arm and right leg. I am ill at home now, since the end of October and the last message from the doctors was,that i have arthritis in the neck also. So work isn’t easy to do anymore. Thanks for sharing this, Tom! I admire your strenght, hopefully it will be better soon. For myself too. I feel sad and it feels like i have failed…but i know i didn’t… i have tried to hard to do everything, but my body said NO… So i have to find the new me…who’s setting boundaries and doesn’t listen that often to other people’s problems amd issues. Unfortunately it was a hard lesson to learn. But i will get up and rise again i hope.
I have had dystonia for 49 years. I was part of the research group for Botox. My dystonia progressed over the years to tortocollis,blepharspasm, dysphonia and facial dystonia. It has been very challenging dealing with this. When I finally got to the point that I can handle this I was diagnosed with Parkinson’s disease. With these new symptoms I do t know how I can go on.
I am so sorry Marlene. That is a long time to have to handle so much. Do your doctors offer any other treatment options?
Beautiful piece, Tom. Very moving. I understand. I hope you are able to balance and get rid of the pain and stress soon.
Thank you very much Jennifer. I really appreciate it and things are much better now.
Thank you for your generous spirit, Tom. And for your kind soul, courage and compassion. I’m
sorry you experienced a stressful time. Fortunately, you sound like you were able to get back on track.
I’m learning to say no, to anything and anyone these days. I have to. I said yes, far too often. I no longer explain why I can’t do things- I tried explaining my life away 🤦♀️. Sending you peace and comfort from Eagle, Idaho.
Thank you, Tom, for being so open, honest and truthful. I do admire your courage.
Melinda
Tom, as soon as I started to read this my eyes filled with tears of understanding and empathy for you. I admire the courage it takes to share your journey with us but I don’t know where I would be without your writings. This share allowed me to realize how I don’t put enough importance on my own peace. Thank you and may God bless you and keep you!
Thank you Tom, for your generous sharing. It helps to know that I am not alone in my struggles. I have had OMD for 10 year and now cervical dystonia and have had my up and downs. Also, you reminded me that I will have difficult times in the future but can learn from then and that I know how to get back to a more joyful, balanced place. Thank you, Tom, for your willingness to openly share your journey.
Sending you love Tom. Sometimes I think getting and keeping in front of this causes stress in itself. Take care if you. You give a lot and that in itself would let certain things in. It’s a tough one. Trying to figure out but having to be conscious of your health at the same time. Music is my get out. I take off with my head phones and just pause, breathe. But I’m so blessed with a husband who got involved from the beginning and ‘gets me’. We all need support but please take care Tom you are a special person with an incredible gift. Live and hugs from me.
Thank you for sharing, Tom. I can relate to so much of this! The last 2 years have felt like I’ve been on an intense drinking bender, and I haven’t touched alcohol in well over 2 yrs. My body has continued on a path of decline due to my not honoring and respecting its limitations, believing I could do more than I can, and desperately wanted to buy into others’ judgements and criticisms that it’s all in my head. My diagnosis of dystonia is new, but all the symptoms are what I’ve complained of, dealt with, and attempted to manage for many years. You continue to be an inspiration to me in more ways than you know. It is SO refreshing to be validated, understood, and encouraged to give myself permission for the proper self care my mind and body so desperately and critically require.
I agree. People ask too much from us… sometimes they demand too much from us. I also can tell when other people have pushed me past my limit. It is hard not to absorb the problems of others. I believe in boundaries. Other people have real problems in life and we worry, worry and grieve for them. This is not healthy for us with dystonia because we have to put a lot of effort into our own healthy habits. We fight everyday and sometimes we can be too generous to listen to the problems of others. They disturb us more than they will ever realize. No one’s life will ever be free of problems or trauma or sickness but we have to take care of ourselves. We carry around chronic pain for years and they are usually in different kind of struggle. Forgive yourself move on! I have to do the same…. without guilt. I hope you feel better!
You are one sensitive man whom I admire. As I have stated I had DBS in 2019 for ET, I also developed dystonia mainly in my neck, my eyes shut when I eat, I get Botox in neck and eyes every 3 month. My neurologist has turned my settings up to the point that my voice has changed so much, sometimes I feel like I am forcing words, no one ever calls me this is depressing.and my husband is a good man but not sensitive. I will soon be 75 and still trying take care of myself, my husband and the house yes my ET is progressing
Thank you so much Gloria! I’m sorry your DBS has impacted your speech. Hopefully the setting can be changed and/or the injections in other area can be more effective so the settings don’t need to be turned up so much. It’s a tricky balance and I hope you and your doctors can find it. If there is every anything I can do to help or just lend and ear, please don’t hesitate to reach out.
What you write is always helpful in my walk with cervical dystonia. This article was especially relevant for my daily need of “me” recovery time.
Thank you Beth. That “me” time is SO important and we need to be careful to not neglect it.
Oh my goodness Tom. Thank you for sharing this so much. It has helped me to calm down – or realise I must do – about things I cannot control. You are so brave defied sharing this with us. Anything can tip us off balance just as we have found some. I have a daughter-in-law who I want to love, but who just will not let me in, even since there is a now 22 month old granddaughter who I love more than my own life. They live 3 hours away and in 2 places. No spare room as they have a lodger in their own home. I struggle 2.5 hours each way on a day trip to visit my son and granddaughter, who is a little girl after my own heart. She laughs, has a massive sense of fun and takes after me and my late mum in that way. I have gone off topic, but the point is, no one realises how hard it is to make this effort. My son is beginning to see it, on the days when his wife is still at work on those precious day trips. But the point is – I want her to see how much I respect their marriage and daughter and just acknowledge that I have a physical disability, so that I can feel less tense. In my sensible self, I know this is her problem and not mine, but I have always had empathy for people so find it hard to take the lack in her.
Thank you Val and thank you in return for opening up. I hope the dynamics of the relationship can change and they can see you for how things really are and to know where your heart lies for all of them.