Shoe Shopping with Chronic Pain Sucks!

Shoe shopping sucks! I’m not a “sneaker head”, don’t understand sneaker heads, and have no desire to own more than a couple of pairs of shoes at any given time. Since I’m what the kids call a “dork”, I have no idea what the cool shoe is either (although I think it has something to do with Nike & Air Jordan’s…maybe). In addition to not knowing what the cool shoe is, it can take me several months of looking at different shoes online before I finally get frustrated with myself and head to my local Dillard’s to try on the latest Born boots. In my defense, I do have a desire to buy the latest and greatest shoe so I can fit in, I just don’t have the mental fortitude to complete the process.

Last Tuesday I reached peak frustration with online shoe shopping and went to Dillard’s looking for a zipper-based Chelsea Boot. Why zipper-based you ask? A zipper-based Chelsea Boot works well when my rheumatoid arthritis is flaring. They are easy for me to get on and off with a bonus of have having no laces to tie several times throughout the day. Plus, I like the look of them, they are essentially cowboy boots for people like me who have never had an opportunity to ride a horse.

In the hopes of mixing up my normal fit, I found a boot that wasn’t from the Born line (I’ve been wearing Born boots for probably 10 years straight now) that I wanted to try on. The salesman thought this new boot would work well with my health issues while providing enough support to be an everyday wear (to be fair, when my bulging disk and pinched nerve in my lower back is flaring, I wear my ASIC runners. My lower back loves the support and comfort of ASIC running shoes for some reason. ASIC how about a sponsorship???). Anyways, it turns out I should have stayed with my usual Born boot because this new Chelsea boot was too narrow for my right foot. While struggling to try and get it on, I felt either my C2 or C3 disk move (think just below the base of your skull) followed by an intense wave of pain that made me dizzy and nauseous. Shoe shopping was done for the day, the only question was whether I could safely drive home so I could lay down or did I need to call for help.

Now that I’ve set the scene for you, time to introduce some patient advocacy into this fascinating look at the role boots play in my life. Through the perspective of my chronic pain experience, I want to look at Cognitive Behavioral Therapy (CBT) or Mindfulness for which I utilize compared to Acceptance and Commitment Therapy (ACT) for which I’m not sold on even though it is like mindfulness, spoiler alert it is the “Acceptance” I have issue with.

Let’s begin with establishing a foundation for this post. First, there are many in the chronic pain community who have stated publicly that if my chronic pain can be managed by CBT or Mindfulness techniques then I don’t have chronic pain. That I am not a true chronic pain patient. This is utter bullshit, do not, I repeat DO NOT let these people discourage you from trying CBT or Mindfulness for your pain management. Opioids, for all their success, can be and are often worthless for one’s pain. For those times it is almost a must to have multiple treatment and management options in your bag of tricks.

This second foundational point I would like to establish might seem contradictory at first read. Just because I’m not sold on ACT that doesn’t mean I won’t fight like hell to gain access for you. If after research and consultation with your medical team you would like to try ACT, I’ll be your biggest supporter. My concern over ACT is based on my research and chronic pain experience. The purpose of this post is to provide a patient centered data point for others, this post is not meant to be the final word. Each patient must decide for themselves on treatment options, I can only provide my patient experience as a step in your journey to a better quality of life.

Now that I have established a foundation, let’s start building this post.

One of the bigger misunderstandings of the life of a chronic pain patient is the role of time. This might seem odd at first, time is a simple concept right. There are 24 hours in a day, 7 days a week, 365 days in a year, and many many many days in one’s entire life. That is not the case with chronic pain. Case in point, the only time that mattered to me after I knew shopping was done and getting home might be a problem because of my neck was that moment at Dillard’s. My diagnosis from many yesterday’s ago did not matter, would I be able to participate in my scheduled interviews later that week did not matter, the only time that did matter was me at Dillard’s with increased pain, dizziness, and pain induced nausea. Accepting this reality was the only way I was going to problem solve my way home at that moment.

Good news, I made it home without any issues. By issues I mean I didn’t have to pull over due to sickness, the pain wasn’t getting significantly worse, and neither was the dizziness. Despite these symptoms, I was starting to stabilize for a lack of a better term. Since I was home, it was time to change my time pain management perspective. Now my pain management becomes about the next 24 to 96 hours. Why you ask? If I were to need a visit to the ER, it would come in this period. More than likely if I needed to go to the ER it would mean that the disk in my neck had ruptured and causing both serious neurological along with physical pain or that the constant pain has caused my heart to jump back into atrial fibrillation (aFib). There is new research to suggest that my chronic pain caused my aFib. Actually new research is supporting the idea that chronic pain can be the foundation of many different issues and illnesses.

Although dizziness is a concerning symptom for someone with neck issues like mine, I did not go to the ER during this time window. At the 96-hour mark I felt confident in my assessment that this is my new normal until I have a third neck surgery. Not exactly a high quality of life but I could be worse. To often we think of acceptance as a yes or no proposition when its an ongoing process. Intellectually I can rationalize that this is my new normal and can accept that. However, due to my stubbornness I have a strong desire to fight this new normal which is why I’m ok with utilizing tools like epidural’s, cognitive behavioral theory, and mindfulness. Life has forced me to accept this as my reality, being mindful and the skills I learned in CBT help make sure I’m still capable of living a good life with my pain.

Despite popular opinion in the chronic pain community, sometimes opioids can be worthless when it comes to helping me live a good life with my pain. This neck episode is a perfect example of what I’m talking about. During this episode, my OxyContin did nothing for me regarding pain control for my neck. Up to the 96-hour mark, the only tool that helped was my mindfulness and CBT training. It kept me focused on problem solving during the now which is why I’m able to write about this episode today.

Opioids are a time management tool, not a pain reliever. They are designed to help me experience the now because I don’t care that I’m in pain, not because it has reduced or stopped my pain. I took my OxyContin during the 96-hour window, but I still cared that I was in pain. Having multiple tools to use at the same time (which doesn’t get talked about nearly enough), it’s not a one or other proposition, is the key to a successful life with pain. 96-hours might not seem like a long time, but it can sure feel like an eternity when you have tears in your eyes and nausea in your soul from chronic pain.

In the interest of fairness and transparency, I should probably let you know that in addition to my OxyContin I also take an opioid called Nucynta ER (the ER stands for extended release). The goal of the Nucynta ER is to help control my rheumatoid arthritis pain which is a different type of pain than my what I experience in my neck. So far, I say so far because clock management is different for my rheumatoid arthritis (RA) pain, the Nucynta ER has kept my RA pain mostly in check which is unusual for me. History shows that my RA flares at high levels when I experience any type of trauma to my body. In this care, the neck pain being the trauma. So, I guess if you are keeping score, opioids are tied at 1 a piece regarding pain management victories. In this world, a tie is generally thought of as a victory for the patient. Mindfulness from my studying of Buddhism would suggest that the fact that I’m still breathing and writing means I’m winning, which I do understand and accept as true.

The great patient advocate Erin Moore once stated, “I hate the term "patient engagement". No one is more engaged, involved than the patient. I want researcher, clinician, industry engagement.” To borrow from Erin, I hate the term “acceptance” in pain management. No one has accepted their pain more than the patient living in chronic pain. I want researcher, clinician, industry acceptance of the fact that I still want and desire a higher quality of life. That I have a human right to a high-quality life for which I need their help obtaining.

Stress, anger, frustration, or negative thoughts are a part of the chronic pain life, but they are the byproduct of living in pain and not the cause or symptom of said pain. There is a difference. And it’s this difference which is why I strongly support Cognitive Behavioral Therapy and Mindfulness training over Acceptance and Commitment Therapy. CBT/Mindfulness helps me in my continuous search for a higher quality of life while ACT helps patients deal with stress, anger, frustration, and negative thoughts but does not fully understand their relation to chronic pain. I’m not saying ACT is bad at all, I’m just not sold on it fully understanding the chronic pain life.

One last thing about time and its importance in chronic pain management. I don’t understand at all why I’m supposed to take time to grieve my life before my diagnosis. If mindfulness teaches anything it’s that yesterday is over and can’t be changed at all. That there is no such thing as a previous or old life, there is just life. Accepting this helps with pain control. In addition, much of the conversation about CBT, mindfulness, or ACT revolves around the idea that life in linear or follows a strict routine. Time, just like life, is flexible which means we must be too. I feel stress, frustration, anger, and have my share of negative thoughts as a byproduct of my pain, don’t get me wrong. It is important to fully experience and let those feelings complete in that moment, the trick is to leave them there in that moment. Moments change which means we must be ready for the next one quickly, we can’t still be working through yesterday or else today’s pain will be much worse. For me, that is CBT and mindfulness in a nutshell. By staying in the moment, my OxyContin and Nucynta ER only must work on the now and not have to fight through the baggage of yesterday too.

If you are curious, I ended up buying a zipper boot from the Boot Barn. Technically, it might be a cowboy boot, but it looks like a Chelsea boot with a zipper. I have them on now, having some trouble breaking them in right now. At least in my eyes, they look like something a cool kid might wear so maybe I can finally lose my dork status. Stay tuned…