It is coming close to the 20th anniversary of when my life completely changed.
This is when chronic pain from Dystonia took over. It was devastating, to say the least. Within months after my first symptoms, I went from a very active, social, athletic person to a pile of mush on the floor rolling around in pain all day. Dystonia blindsided me, turning my world completely around.
I didn’t have good days or bad days back then, or even parts of days that were okay enough where I could do things around the house or outside the house; to run an errand, enjoy a meal with friends, or just see a movie. I was floor-ridden and only got up to go to the bathroom or get something to eat; which I often brought back to the floor to eat lying down because being upright for any length of time was excruciating. The pain from the involuntary muscle spasms and contractions and my head locked in a turned position, forced me to give up almost everything from the life I was living. I could barely do the most basic of daily tasks. It was heartbreaking.
After years of working through the physical and emotional pain, finding numerous things to help me better manage my symptoms, (which is still a daily requirement for me to be as functional as possible), who I am now is a far cry from the person I was before Dystonia, but a far cry from me at my worst; which is how I measure my progress. I don’t compare myself today to the person I was before Dystonia. To me, this is unrealistic. I measure my life now to my toughest times to see how far I have come.
I encourage you to do the same, because when we look in the past and grieve the “old” us, it only brings sorrow. I can easily compare the person I was before Dystonia to the person I am now and see how different life is and easily become depressed. There is no point to this because I was crushed with a brutal, life-altering health condition, so the only fair measurement, from my perspective, is how far I have come from the devastation of that life-change.
The biggest challenge for most of us is learning to deal with them emotionally.
The pain is horrible for sure, but the anxiety, depression, fear and isolation are along for the ride. There is not remotely enough room in this article to go over the many strategies for how to be as healthy as possible and live effectively with all of this physical and emotional pain. For all the numerous options available, I encourage you to get my book- “Diagnosis Dystonia: Navigating the Journey,” and specifically check out chapters 9-15, which are devoted to coping with and managing all sorts of pain in our lives. Even if you don’t have Dystonia, this book applies to any physical or mental health condition.
The first thing I had to do was learn to accept that life was different. Not that it would always be different, but to be present in the moment and accept that it was different from those before.
I then had to learn to sit with my pain. This was such a huge step in my ability to cope, because running from pain, emotional or physical, does not make it go away. It can sometimes make it worse.
Many people I know remain as active as possible because when they stop moving, the pain is at its worst. I contend that the movement helps because it distracts the mind and because movement is good for movement-disorders and pain. This is all well and good, but this can cause the pain to become worse when you are at rest, because the body is being overly stressed from over-activity or the“wrong” activities. We need to better balance between activity and rest because, I would guess, that most of us too often neglect resting, breathing, relaxing and practicing how to “let go.”
When feeling stressed or in pain, try sitting with it.
If you run, you stay in fight-or-flight mode which increases adrenaline and causes stress that worsens our health. Allow yourself to acclimate to your situation without resistance. Resistance to anything in life increases its power over us. If we can learn to stop resisting what is, it leads to comfort in uncomfortable situations. We then learn to accept what is happening at the moment, without panic, worry, fear, or anger. This leads to an easier acceptance of other life-changes and challenges.
If we can learn to sit with our pain and become as stoic as possible, our emotions will not feed the physical symptoms; and vice-versa. Please understand that this is a daily practice and if you are dedicated, you will see results.
Regarding emotions, we must be so careful because when we are filled with anger, fear, hatred, jealousy, bitterness, resentment and other similar emotions, we activate stress hormones that prevent us from healing. This is why learning to sit with all of life’s ups and downs, rather than run from or resist them, is so important.
I would like to end this with one of my favorite affirmations that helps me with pain and unwanted emotions, or simply when life is not going as I want or planned. It comes from Louise Hay – “I relax into the flow of life and life flows through me with ease.”