Chronic Pain Defined...Defining Chronic Pain

You can't know how difficult life is living in a constant state of pain until you live it yourself. I have Complex Regional Pain Syndrome (CRPS), a painful condition of the central nervous system that is always sending pain signals to the brain, disrupting the neural pathways that make up your brain. I have CRPS in both my legs in their entirety. It's one of the most painful diseases known to man, and rated at a 42/50 in the McGill Pain Index. I have talked to numerous people over the years who have shared with me their experience with pain. Almost all of them shared in acknowledging how hard it is to live with, and they had a whole new appreciation for who I am and what I go through. They learned quickly that being in a persistent state of pain makes simple, everyday tasks and critical thinking extremely difficult and more complicated to do. That everything now revolves around your chronic pain and managing your chronic pain. This added responsibility is made even more difficult because of the changes that occur in the brain that chronic pain is causing. All of this is exhausting to manage. In fact, living day in and day out, with extreme chronic pain is exhausting on its own.

What do you do when you're an artist who can't find a free image to use for their blog post? You draw it!

According to the dictionary, "chronic" is defined as being something that is continuing a long time or recurring frequently; having long had a disease, habit, weakness or the like; and (of disease) having long duration; and

"Pain" is defined as physical suffering or distress, as due to injury or illness; and a distressing sensation in a particular part of the body. 

Chronic pain's deep reach into the mind, heart and soul can be paralyzing and uncomfortable. It causes us to doubt ourselves, and our purpose, how useful we are and can leave us feeling frozen and isolated. It seeps into every crevice of your being, until one day there's no cracks left for it to seep into, and you realize you are at your limit. Pain has overwhelmed the brain and body in its entirety. Over time, chronic pain begins to define us more and more deeply, with society's labels and labels we put on ourselves and each other. These labels might not even be entirely accurate, but they are governing our days. Those labels then become our truth. Over time these "truths" erode away at our self esteem and we begin to believe the lies it tells us about our value and self worth. 

This set of images demonstrates what it's like to move with chronic pain - just about every movement I could possibly make in any given day, causes sharp, upwards bursts of pain in my body, and these shocking fluctuations of pain can be very traumatizing to experience, especially over time.

Chronic pain's strong hold doesn't stop with the individual suffering with chronic pain.  It also grips the family unit tightly, while it slowly destroys everything you've built and worked for in life. It makes having friendships harder too. When it came down to it, only a few of my friends took the time to try and understand, and even fewer that stuck around past the first year. I don't blame them, I didn't understand what was happening to me. I was always going to the doctor, and could not do the things I was used to doing. Being in that much pain was hard to navigate, especially at first. There was so much going on, and I was so overwhelmed, that I don't remember much of the first five years. The friends I’ve made after my fall and diagnosis of CRPS don’t know me any other way, and they accept me for who I am. 

There are a multitude of logos and symbols that represent chronic pain.

In the beginning, soon after my diagnosis, a friend with experience with CRPS, said that it would take me 10 years before I found all the right meds and began to stablize, and another 10 years to find a way to thrive and have purpose in spite of CRPS. She couldn't have been more right. It's been over 16 years, and I feel like I'm just beginning to find myself and discover my purpose. 

How does one not be defined by something so all encompassing and consuming? 

How do we rise above our chronic pain to reach our goals and dreams? 

How do we find enjoyment and inner peace when our bodies are being tortured? 

How do we stop the perpetual grieving cycle when you experience loss after loss, of pieces of oneself?

Often times living with chronic pain is like having to push something heavy around with you all day. You feel heavier and sluggish, tire easily and have no energy. Chronic pain likes to make things difficult, and more complicated. It tells us what to do, and more importantly, tells us what we can't do.

The answer, in simple terms, is you work hard on yourself. You do that by taking things one step at a time and gathering your supports. You go to therapy, find support groups, online or in person, and do the hard work assigned by your therapist or other mental health practitioner. You research your diagnoses and read inspiring stories about people who have your illness. You learn all you can about chronic pain so that you can advocate for yourself. But, you have to do this while managing your chronic pain and mental health struggles, and trying to keep up with normal day to day tasks. Of course this is not so simple. It's complex and takes time, is easier said than done, and is something that doesn't happen overnight. It takes some time to understand what's going on so you can build your support system, and find what works. 

One other thing also helps set you up for success, and that is making being organized a priority. Living with chronic pain is a lot of work and it affects your brain significantly. Brain fog is a real thing, and you can forget something as soon as it's been said, and again when you ask the person to repeat it. It's also hard to keep track when having a conversation. I get lost where we are in the conversation, and what it’s about, often, and need cues to remind me what is being talked about. When you live with chronic pain, your day to day functions are competing for attention with the pain signals assaulting your brain, and it makes processing and doing things so much harder. Brain fog also causes cognitive processing issues and that means I often need what was said explained further so I can process and respond correctly. I need to write a lot of stuff down, have lists and have multiple reminder systems in place, as well as people in my support system to remind me, in order to stay on top of everything. I need a lot of help to keep track of simple things, and I find this aspect of my chronic pain very embarrassing. It makes me feel bad about myself and I get trapped in thinking I’m not so smart. 

It sounds so simple, staying organized, but when there are a flurry of different pain signals all going off at the same time, it's not so easy. 

With a lot of help from my mom, I'm getting myself organized in the important areas of my life, and it's encouraged me to get more organized in other aspects of my life. The chaos that living with chronic pain brings to trying to stay organized, means that even though I do my best, I still require a lot of hand holding and help in this regard. Recently, to help with that, I got an Amazon Echo to use as a sort of personal assistant to give me verbal reminders and alarms that I tell it to set, and it's been a great help. I need a lot of verbal and written prompts and reminders, which mostly consists of my mom messaging or calling me to check in with what I need to do, me writing it down in my calendar and setting reminders, and my mom following up with me throughout the day to help if I’m struggling in any way to do those tasks. It's almost a full time job managing chronic pain and I want to lessen the burden I place on her, even though she's never complained, and does it all with a smile and sweet and loving kind words of encouragement. 

In trying to be organized with doctor's appointments, other health care practitioner appointments, and managing the medications I take, I go through a lot of sticky notes and note pads. 

In addition to my Echo, I have my phone and certain apps that help with my mental health and organization, and an old fashioned dayplanner, to keep track of things I need to keep track of. I still require a lot of help in staying organized, but I can say that I'm proud of myself for needing the help a little less. It's been humbling to have to accept this is who I am and to adapt to relearn basic organizational skills and executive functioning as an adult. I also have to keep in mind that they may need adjustments to be something realistic and attainable for me that will also click with my brain. 

I am excited I'm finding new ways to manage and to do what works for me. In all my hard work, I'm beginning to see and feel progress and I feel I am slowly making my way towards being more independent. I am so lucky to have my mom's unwavering support in this area. 

Over the years, chronic pain has tried to rob me of everything, and on the surface in many respects it looks like it has succeeded, at least partially. You find out how strong you are. But, in saying that, when you look deeper, you see the effort I put into what I've held onto and nurtured, and despite its continuous efforts, I have not let pain rob me blind or defeat me. 

How has pain changed and defined you? 

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