Adapting to a life filled with pain and debilitation is exhausting, to put it mildly.
Pain is one of the most intrusive things we can experience because it impacts nearly every aspect of our lives, especially if it is chronic. As Bonnie Prudden said, “Pain, not death, is the enemy of mankind.” I have lived with pain most of my life, but nothing ever so intense as the pain that came when I developed dystonia nearly 20 years ago.
The emotional toll of pain can be just as bad, and sometimes even worse than the physical pain. It is remarkably difficult to understand, so to add insult to injury, we are often judged by others because they can’t see our pain. Most people can relate to short term pain or temporary limitation when they are sick, but life offers a whole new set of challenges when the condition is chronic, particularly for those who were once in good health.
Losing one’s identity, abilities, and choices that many often take for granted is the reality of chronic pain. Adapting to a life filled with pain and debilitation (mental and/or physical) makes it so you are always being tested to the limits. It is exhausting, to put it mildly. When my dystonia symptoms first began up to a few months before being diagnosed, I had little to no pain in my neck or back.
Living with Dystonia
Over a period of about 8 months, my pain increased exponentially to the point that I could barely function. It felt like there was a power drill continuously going into the base of my skull which radiated down my neck into my shoulders. It was a miserable existence. I didn’t know pain like that was possible. It reminded me of how it felt at the exact moment I incurred an injury; the kind of injury where the pain takes your breath away for a moment. Unlike those instances where the pain subsided in a short period of time, the pain from dystonia never left. It was like I was experiencing the sensation of pain at the point of injury over and over. It literally took my breath away. I used to listen to people complain about an ache or pain and say to myself in anger and frustration, “if they only knew what real pain was like!” I understood what pain was like from many sports injuries and other aches and pains throughout my life, but the pain from dystonia is a different beast. It took me a while to appreciate that pain is relative to everyone’s own experiences (we only know what we know) and pain of any kind can impact the quality of life, so I no longer pass judgment.
The Life impact of pain
If you suffer from chronic pain, you not only live with the unrelenting sensation of pain, but probably have trouble sleeping, you may experience anxiety, depression, and loneliness, and possibly have difficulty making decisions because pain can impact our ability to concentrate. Brain activity in people who suffer from chronic pain is different from those who do not. In a healthy brain, all regions are in a state of equilibrium. When one region is active, the others quiet down. In people with chronic pain, the prefrontal cortex, the location for cognitive, emotional, and behavioral functioning, is always active. When this region is stuck in full throttle, neurons can change their connections with other neurons making it more difficult for people to concentrate, solve problems, make decisions, or be in a good mood.
As mentioned, sleep deprivation, anxiety, and depression often accompany pain, and there are physiological reasons for all this. Areas of the brain responsible for sensory stimulation are also responsible for controlling our sleep and wake cycle. When there is overstimulation, it makes it difficult for the brain to rest. Anxiety is also very common because reduced control over pain signals causes the brain to become extremely vigilant in anticipating future pain. We are almost always on edge, essentially living in fight or flight mode.
Reduced control over pain signals also contributes to depression due to chemical changes in the brain, as well as an exhausted feeling of helplessness and hopelessness. So, pain contributes to anxiety and depression, but also the other way around. It is a vicious cycle, each feeding off the other. For pretty much anyone living with chronic pain, you know exactly what I am talking about. We not only battle physical pain on a regular basis, we battle a very significant emotional toll as well. Then for people to say things to us like, “just get over it,” or “just push through it”, it in no way acknowledges the complexity of our pain.
There are many ways to treat/manage pain including, but not limited to, surgery, medications, nutrition, acupuncture, chiropractic, massage therapy, cranial-sacral therapy, physical therapy, behavior modification, biofeedback, prayer, meditation, and rest/relaxation therapies. Another important component of pain management involves regulating your daily schedule so that you have the right balance of activity, rest, social interaction, quiet time, and energy-giving activities.
I do my best to remove toxicity from my life, be it people, the environment, my thoughts, or what I put in my body. I also avoid noxious stimuli that overwhelm my nervous system (certain lights, sounds, environments), and how much I push myself beyond the boundaries that my body can handle. Ultimately for me, a major change in lifestyle and accepting that lifestyle is the key to my ability to better manage my pain and other symptoms. I have also decided to simply be as happy I can no matter what is going on in my life. As you can see in the photos below, I have come a very long way. I still have far to go (pain and other symptoms I feel that you can’t see), but the point I need to super emphasize is that the way I have been able to get improvement, and lasting improvement, is years of daily dedication to all the things I mentioned. I also needed to learn to accept my situation and make the most of it.
I had to get rid of the intense anger, resentment, shame, blame, depression, anxiety, and every other negative emotion for my body to begin to heal. I still slip and have really bad days physically and emotionally, but I don’t let them overtake me because I know that these things I do every day will keep me on the right track.