Chronic: The Pain We Don’t See, Chapter 8

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Top photo by Tim Forkes

Chapter 8: An Anniversary I Can’t Escape Tuesday: June 16, 2020 

Thirteen years ago this morning, my life changed in an instant. One mistake on my bicycle launched me head first into the base of a juniper trunk, snapping my neck and bouncing me uncontrollably like I was a rag doll. When I thudded to a stop, my body lay in a wreck, never to fully repair itself despite five years of physical therapy. 

Much of the last 13 years has been spent dealing with the aftermath from that day. To most people who set eyes on me, they see a physically fit man who looks younger than his almost 62 years. What they do not see is the internal carnage. Fifteen herniated disks in the neck, anyone of which can act up at any given time. Severe spinal stenosis and external stenosis have choked off the nerves that exit my neck and run down through my shoulders, upper arms, elbows, forearms, hands and fingers. On the pain scale, today is not so bad, probably a high three or low four, but that can change at any moment. 

The weakness in my upper extremities has resulted in seeing a massive decline in arm strength. There are but a small handful of weight exercises I do. Today, I did three sets of alternating shoulder presses using eight pound dumbbells. I used to bench press over 250 pounds. Today, I can’t bench press at all because of my impinged shoulder. I no longer ride my road bike or even a stationary bike because it hurts too much to hold onto the handlebars. 

On my worst days, I wonder if it was worth surviving what I was told too many times should have killed me. I have a constant occipital headache. I can up the dosage of a medication I take for it to knock it out, but doing so just leaves me loopy and it wouldn’t be safe for me to drive across town for fear of falling asleep at the wheel. A smaller dose dulls it enough and allows me to function without feeling like a zombie. 

It has now been seven months since the start of my current pain flare up. There have been occasional days here and there without pain, but for the most part pain has been constant. I try to suck it up and carry on with life, but after a few days or a week at most, I have to rely on pain medication. During this flare up, I have seen my tolerance to my Norco build up and the need to take a higher dose. Only recently have I been given a powerful anti-inflammatory I can take for five days to knock out my inflammation and give me a break from my narcotic. 

I can’t hold down a job because of this pain so now, on my best days, I am a house husband who looks after our five dogs and does the chores. On my worst days, I struggle not to curl up in a fetal position and wait for my pain medication to kick in. There is no consistency to this pain so there is no way to make plans around it. I either medicate before I head off as a preventative measure or bring medication with me so I have it on hand. Either way, I am not supposed to drive while on it, operate equipment, or make important decisions. Tell this to an employer and see whether you get hired for an opening. 

Physical pain is just one reminder of this day in 2007. Constant pain at the levels I get hit with drains the body of my energy. Increasingly, there are days where I feel depleted and am unable to muster the energy to do the simplest of tasks. I am learning to parcel out my energy in smaller increments. By the end of most days, I am as exhausted as anyone who worked a double shift even though I have done next to nothing. 

Four years ago, when I moved out to Camarillo to be with Charlene, I was still able to construct a new patio as well as other large projects in our yard. Yesterday, after I trimmed two rose bushes, I was totally gassed and needed to go lay down. I sleep when I can because sleeping at night in our bed is often so painful, I give up on the idea. Lately, my sleep has improved to where I get about fours in the bed before I head out to the recliner for another two. A strong cup of coffee is needed to jump start me and oftentimes, within an hour of drinking it, I am napping for the first time of the day even though the sun has yet to rise. 

During the day, I rely on drinks with high doses of B12 for energy. I wage a constant battle to remain alert every bit as much as I wage one to beat back waves of pain. 

This is not something I would wish on anyone, and yet, I have grown accustomed to it. I would take this struggle over battling cancer or some other major disease. Still, iI am worn out. For the first time in my life I wonder how long I will wage this battle before I give up. I worry about what choices I might make if I am hit with something like cancer or coronavirus to fight along with this. I have always said quality of life beats quantity. I know already I do not look forward to my 80’s or 90’s if this struggle continues. 

For now, I will continue to chase treatments that offer me hope. Still, I know there may well come a day very soon where I just have to accept all of this and quit chasing what is never going to be there. Until that time, I choose to believe it is possible for much of this pain to be knocked out and held at bay so that I can get back to enjoying life. 

Saturday: June 20, 2020 

I am at the mid way mark of my TMS treatment and have begun noticing subtle changes. My mood has not been what I would describe as up or happy, but the lows have subsided. This in itself is half the battle of depression. Knocking out the lows makes it easier to change your self talk which is important. How we talk to ourselves results in how we see the world around us. 

Without the lows, I am able to see the good more and make the decision to stop allowing the negative to consume me. 

One of the decisions I have made is to rid myself of the people who have a way of filling up my Facebook page with negativity, in particular, those who post comments centered around hate or filled with code words that support it. I am done engaging these people and instead prohibit them from posting on my page. They are no longer worth my time or energy in debating so in their place, I only follow people who have a more positive and hopeful message about life. 

My therapist has me concentrating more on using the frontal lobe of my brain more which allows me to be more logical. Emotionally, I may want to react to an event or post on social media, but now, logically, I understand the consequences that come from this. In most cases, nothing positive comes from reacting to what I find upsetting, distasteful, or just plain inaccurate. Now, when I respond, I try to focus more on facts rather than emotions or I simply remove the post from my page. The people who I realize are consistent in the nonsense they post stop being stressful to me when I simply remove them from my Facebook page and move on and focus on those who offer a healthier perspective. Their beliefs can differ from mine, but they can’t be a source of discord in my life. 

I am also spending less time reading all the “news” of the day. In its place, I search for stories about my favorite music and enjoy videos of my favorite comedians and rock stars. I do not need to follow current events as much as I have always done when so much of it is centered around a president I find to me a madman. 

This past week, I have been less anxious during the day and a big part of that has been in a change I have made in dealing with my pain. I am on day four of a powerful anti-inflammatory. Less inflammation has resulted in less pain. I take a five day course of this drug and hope when I am finished, I am able to keep ahead of the pain. 

I am constantly adjusting my workouts as well with the hope of not over training. Fatigue was catching up with me so I have backed off what I normally do and will wait for my energy to return. Because I have been maintaining a workout log religiously this year, I am better able to see when my fatigue really knocks me back and have noticed it happens after weeks where I put in a larger block of running. It is not so much the intensity of the runs as much as the total time spent running. As a result, for now, I will run no more than two days in a row and skip the running on the third day and replace it with a workout designed to help me recover from running while focusing on my core and arm strength. 

Sleep is still important and I am more willing to take a nap during the day, especially if the night before included a poor night of sleep. 

All of this has added up to me feeling like I can do more things during the day that help me to remain busy and takes my mind off of pain and fatigue. They also have a way of stimulating my brain which releases more feel good chemicals and this leads to a chain reaction of an overall better frame of mind. Right now, all of this feels new and I need to keep working at it. However, if I can maintain this over a long enough period of time, I can reprogram how my brain works which in turn reprograms my entire life for the better. 

It’s not easy, but as long as I am willing, it still seems possible to teach this old dog some new tricks. 

Friday: June 26, 2020 

On Sunday, I completed a five day course of SPRIX, a nasal NSAID that is similar to a Toradol shot. It is a pretty powerful anti-inflammatory and really did a great job knocking out most of my inflammation. Today, nearly five days after finishing it, I am still enjoying little to no pain. I have been getting a taste of what my life is like when I am not having to cope with constant pain and the fatigue that comes with it. I am seeing life more clearly and understand better just how much of my energy is sucked up by both. My wife also notices the difference and is just as happy as I am. 

I am also well past the halfway mark of my TMS treatment and have seen a noticeable improvement in how I feel mentally. The triangular effect of these three invisible illnesses has been grinding away at me on many levels, wearing me out and making me question how much of the three I can take. 

Individually, each of these illnesses can be overcome without much difficulty if you seek help. However, when the three feed off of each other, the snowballing effect they create quickly becomes overwhelming. Getting a break from all three, my first in over seven months, makes me realize just how different my life can be when I am not consumed with a three way struggle. I know when I finally get ahead of these illnesses, I am going to have to remain vigilant and make sure to nip things early so as not to allow my life to spiral out of control. 

Next Wednesday, I receive epidurals for my neck. As part of my preparation for them, I have to stop all my anti-inflammatory meds. I know there is a good chance in the next few days I will be slammed hard by pain. I will need to be able to remind myself the pain will be temporary and I will regain the upper hand over it. Believing in this will help prevent a slide into situational depression and see a return of the fatigue that knocks me on my butt. 

Still, I am not going to sit back and wait for my pain to return. I feel too good to do that and intend to turn my attention toward the things I enjoy most. 

Today, I have hope instead of despair. I am confident I am on the right path and can begin planning on moving forward with my life. This might be something many take for granted. I know I have in the past. However, after what I have experienced since last November, I have been humbled and see just how fast one’s life can change and become something you never expected. 

Today, it feels good to be me and I do not intend to let go of this feeling without a fight. 

Tuesday: June 30, 2020 

I am now six days into no anti-inflammatories and tomorrow I receive my epidurals. For the most part, it has not been as bad as I thought it would be having to go without it, however, I have noticed more nerve discomfort with each passing day. Yesterday was the first day I needed to take more than a single dose of Norco for pain. However, my pain was limited to nerve discomfort from my left shoulder down through my left arm. 

Yesterday, I also managed to have a minor accident in my garage while drilling small holes in a pipe. The drill bit slipped off the pipe and managed to penetrate my left thumb. If the blood was not enough, the throbbing pain that came with it coupled with the burning nerve pain in my elbow made sleeping next to impossible. I managed about three hours of sleep, but only after wrapping an ice pack around my thumb. I guess when it rains, it pours pain. 

Normally, this sort of thing would cause my depression to worsen. However, my TMS therapy is kicking in and despite my pain, my mood remained calm and positive. I am now better able to keep things in perspective and am not projecting worst case scenarios as often. I have had a habit of allowing my mind to wander off to thinking thoughts that make my depression worse. Being able to frame situations in a more positive light and reminding myself to focus on what I have control over helps immensely. 

One of the things I have become aware of is my need to find a system, or schedule, for working out that is more consistent for me. I have been forced to cut back on some things that aggravate my nerve pain and am often limited to what I can do in the gym. I love designing my gym sessions, but I grow frustrated because I often get out to the garage and realize some, or much, of what I have planned is not in the cards for me due to pain flare ups. For instance, yesterday, one of the exercises I planned on doing was lateral planks. When I went to do them, I quickly realized my left elbow was too tender to lean on and even if it wasn’t, my shoulder was too weak to support my weight. I had to change my plan on the fly which is something I now have to do with every strength session. 

There are several exercises I no longer take into consideration because of my arm weakness or pain. I have also stopped riding my bicycle because of neck discomfort and have not used an exercise bike in months because my arms hurt too much to support my upper torso when I lean forward onto the handle bars. While I am able to enjoy running on my treadmill, I have seen the last couple of years pass with me being unable to enjoy the variety of workouts I used to enjoy. 

My strength work now consists mostly of pushing and pulling work and even that requires special preparation to do. I have to make sure I roll out the back of my shoulder and then do specific rehab exercises before I move on to doing pushups, front lat pull downs, and pull up rows. Most any other arm work comes with a severe price that all too often is not worth paying or has seen such a huge drop off in strength that I become frustrated. 

Like so many other things, as I have gotten older and had to deal with issues I never had to before, I am having to learn new ways to find pleasure from working out despite it often being a reminder of increasing limitations. It is these limitations and the unpredictability of how my body will feel on any given day that has resulted in my no longer having a set workout routine. Now, half of what I do for any workout is just preparing my body for what it is about to be tasked with doing. 

The end result is it takes me longer to do less. I am fortunate to be blessed with the time necessary to get in a good workout and I can’t imagine how I would feel if I did not. Still, working out has become another reminder of all the challenges I am facing, along with all the losses I have experienced. 

I no longer focus on setting any personal bests. Instead, my focus is on personal enjoyment. Finding a nice rhythm that allows me to run smoothly without destroying myself just to take a few seconds off a PR has become my priority. Lift with the idea of seeing the functional use of what I am doing instead of focusing on how much weight I am lifting. Understanding a strong and sturdy core can be achieved with body weight movements that incorporate items like a Bosu Ball or Swiss Ball instead of heavy weights. Appreciate knowing a resistance band can do more good for me than increasing a lift by five or ten pounds. 

As I am learning to evolve, grow, and adjust to my life with the help of experts to help me overcome my depression, pain, and fatigue, I am also learning to do the same with my passion for physical fitness. If all I do is change and grow in one area while neglecting to do so in other areas, I will continue facing struggles that can be avoided. By recognizing my need to constantly change in order to enjoy a better life, I give myself a better chance at that better life. There can be no letting up without risking losing out on a life worth living.