Chronic: The Pain We Don’t See, Chapter 13

Top illustration by Tim Forkes

Chapter 13: Being Seen As Human Saturday: September 5, 2020

As I was lying face down on an operating room table on Wednesday, my anesthesiologist, a sweet Asian woman who looks like she belongs in high school and not a medical school graduate, whispered in my ear, “Mr. Moore, before I give you something that will make you sleep, I just want you to know it is my deepest hope you get the relief you need from your pain from today’s procedure. Be well.”

When life is difficult, it is easy to end up feeling as if you are alone in the world. It’s rare that this is the actual case. Most people who look into your eyes and see the pain you feel, whether it is emotional trauma, a personal setback, or the pain that comes from an illness or injury, want to help if they can. Even in today’s medical industry where it is easy to feel like you are nothing but a number and not an actual person, I find the doctors and staff at the many places I have been sent to kind and compassionate.

My procedure went off without a hitch and I felt well enough the next day to hop on my bike for an easy paced ride. Other than a little discomfort in my left shoulder, I felt no other signs of weakness or pain due to my neck. By day’s end, I still felt pretty much pain free and was not needing any pain medication. I continue to feel like I am getting a good result from the epidurals and am crossing my fingers the benefits last longer than my previous set.

Three days without needing anything for my pain has also helped my fatigue levels decline. I could not help but notice how much more energized I felt this morning as I headed off for a two and a half hour bike ride that included some pretty challenging climbs. When I was finished, I felt as if I had another solid hour in me.

I feel as if I now have a blank canvass in front of me. My pain is gone, there are no pain medications running through my blood, and I have an opportunity to get a much clearer picture of how my pain sets up in me should it return. I also have more than just my Vicodin and Robaxin to deal with the pain. I can access my nasal Toradol to knock out inflammation instead of relying on an opioid so that if I do need my Vicodin again, a smaller dose will do a better job for me than the larger ones I was building up a tolerance to.

If I can manage to get a few months relief instead of a few weeks like I did from the previous epidurals, this will allow my body to cleanse itself from the poisons I hate having to rely on to combat my pain. While I was feeling overwhelmed in January from all the different treatments I was chasing, now I have narrowed things down to a more manageable system that I want to give a chance to see if it works.

Still, I know I live with pain. I know it fluctuates and I also know I have a tendency to suck it up and see if I can ride out a wave without seeking treatment. This is not so much a battle I think I am actually going to win by eliminating pain for good. The injuries my body has accrued over my life along with all the surgeries I have had pretty much assures me I will have my share of aches and pains. This is normal pain, the kind that responds well to keeping active and moving about. However, if I can limit the nerve related pain that knocks me on my ass and makes me hate life, that will be a huge victory. If I can avoid having my neck rebuilt, that too will be a sweet victory.

This morning as I set out on my ride at 6:30, I knew immediately it was going to be a strong one. While I enjoyed riding alone up and down one steep neighborhood road after another in the hills north of me, it dawned on me, I was not riding alone. I was a reflection of each doctor, nurse, physical therapist, friend, and loved one who has expressed to me I am not alone in my struggle against chronic pain, fatigue, and depression. Today was a celebration and a reminder why I refuse to give up this fight.

Monday: September 7, 2020

A key component to recovery from illness or injury is sleep. Poor sleep is known to exacerbate health issues. Americans are notorious for compensating for poor sleep or lack of hours at rest by pumping caffeine into their veins. When the caffeine begins to affect their ability to sleep, they counter its effects with alcohol or sleeping pills. It all adds up to more toxins flowing in our bodies while it loses its ability to just do what should come natural as part of its self-regulation.

Normally, when I am not in pain, I enjoy my sleep. I sleep deep and am often surprised to find out all that I missed in the middle of the night. My wife will tell me I slept through one of our dogs having an upset stomach and needing to be taken out two or three times. I might be unaware another of our dogs caused a ruckus jumping up or down from our bed.

Once, when I was home from college and sleeping soundly in the tiny back bedroom of my parents’ house, the smoke detector in my room began to sound an alarm that woke up everyone else at the other end. Someone had to physically shake me awake before I realized what was happening.

This morning, I gave up on sleep at 1:30. The primary culprit for my inability to sleep had nothing to do with pain. On a normal pain free night, I would sleep soundly. However, we are in the midst of one of the worst heat waves in Southern California history. Yesterday, while driving with my wife, at 1:11 in the afternoon, the outside temperature in nearby Moorpark was 111 degrees. A half hour later, as we passed the off ramp for Laurel Canyon, the temperature was 120 degrees. Just a week ago I was enjoying the coastal gloom that has extended beyond the usual month of June and into to all summer. I was wearing arm warmers and two pairs of socks while on my morning bike rides in cool 60 degree weather that left moisture on the roads.

Our home does not have air conditioning because when it was built 30 years ago, Camarillo rarely had days over 85 degrees. Yesterday, at around three in the afternoon, our thermostat read 87 degrees in the cool of our hallway. Making sure I have rolled down the UV blocking outdoor blinds, closing up windows, and having fans set up to circulate the air hasn’t made it comfortable enough for me to sleep. Toss in the endless amounts of fluids I consume all day to remain hydrated makes a sound sleep impossible because I am up peeing every two hours and then drinking more fluid.

I gave up sleeping in bed last night at around ten. The ceiling fan felt more like a furnace so I headed out to the front of the house to my recliner. There, with a fan aimed at me and the back patio slider opened, I nodded off in no time. However, at midnight, major cramps in my calves and ankles and a bladder telling me I have too much fluid in me woke me up. A quick trip to the bathroom, a stretching of my calves, and a small sip of ice cold water were followed by me falling right back to sleep in my recliner. By 1:30, I gave up on sleeping. More cramps, another trip to pee, and then a curious look to check my weight on my scale and I was wide awake.

Why the scale? I wanted to know if I was as dehydrated as I felt or was my thirst and peeing another issue. Sure enough, I was dehydrated. When it gets as hot out as it has been, I will weigh myself throughout the day to monitor my fluid needs. Having been involved in sports much of my life, I know it does not take much of a loss of fluid to cause muscles to cramp as well as other heat related symptoms like headaches and dizziness. Despite all the fluid I consumed yesterday, my weight was down almost four pounds from what it would normally be.

Instead of more sleep and more cramps, I headed to the kitchen and mixed up a cold drink filled with electrolytes and amino acids. I was wide awake and the cool air and quiet of the middle of the night were a pleasant reprieve from the heat of yesterday and the heat predicted for today. I plan to leave by 6:30 this morning for a bike ride that will get me home before the heat picks up, but I knew I needed to get more fluids in me to become properly hydrated. Otherwise, it will be two hours of more cramps.

Once, eight years ago, I entered a metric century bike ride in Yucaipa on the first day of summer break. Instead of a cool June morning, a heat wave arrived that saw the temperature hit 90 degrees at the 8:00am start time. Three hours later, as I approached the ride’s big climb, it was over 110 degrees. I made a point of stopping at each fluid station to refill my three water bottles with what amounted to warm bath water because nothing kept the water cold.

Toward the top of the climb, I stood up from my saddle to pedal and was quickly paralyzed by a cramp. My reaction to it led to a chain reaction of cramping that forced me off my bike. I was left to walk it to the peak while trying to calm down my muscles. At the top, I felt human again and climbed back on my bike for the descent to the finish line only to cramp so much that my fingers struggled to squeeze my breaks.

Somehow, I managed to not crash and I made it down the mountain to the flat roads of the city where I pedaled just enough to keep the bike moving while warding off one cramp after another.

Today, I figure if I am going to be stuck indoors without any AC, I might as well put in a ride beforehand so I can say I at least got some exercise. I figure I can nap later with a fan cooling me, but for now, I will pump the fluids. At least I am not questioning whether I can work out because of a high level of pain.

Thursday: September 10, 2020

It has been nine months since I stopped working the last of my three part time jobs so I could devote my time to my health. Since then, I have made great progress with my depression, but on the pain and fatigue fronts, I am not where I want to be. If I have to live for epidural procedures every three or four months, it means I am not succeeding. I have to be realistic when it comes to what I am up against. There is no magical solution that will fix what needs repairing in my neck without leaving me with either significant limitations or new pain.

Every day I scour the local jobs. Whenever I see one that looks like I might be qualified for, I check to see if it is full or part time. When I see it is full time, I immediately remove it from my search list. I know I will not work full time again. First, I don’t want to. One of the reasons I retired when I did was to enjoy more of the things I like most. Second, I know I do not have it in me to work full time without being completely exhausted at the end of the day, especially when I am in the midst of a pain flare up.

However, not all part time jobs are equal. I know I have to be excited about anything I do. I also know there are many things I am not qualified for or willing to become certified to do. Currently, I see scores of job postings for delivery drivers, restaurant help, and elderly care. Unfortunately, those fields do not excite me. If I took a job in one of those areas, I know I would continue looking for other work. Since I am not desperate for money, I can be choosey.

I figure 15 to 20 hours a week is enough for me. It will provide a little extra money, afford me the time to still do the things I enjoy the most, and not leave me feeling wiped out all the time. The challenge is finding an employer who is looking for someone to either work a few hours each day or a few days each week for a full day.

Also, my age no longer works to my advantage as long as I am selective about what I do. If it were not for my struggles with pain, I would not be nearly as selective. I know enough to know no employer wants to hire anyone with a chronic condition that might result in a short time on the job.

Today, while searching job announcements, three stood out. The first is part time in the mornings at a local deli. The second is working customer service for a driving school. The last one is working at a pet cremation center, something I did before moving to Camarillo. Still, I have to admit I am filled with plenty of self-doubt about working any job. Even if my pain were gone for good, I now feel as if I have been away from work for such a long time and developed a routine on the home front that I question whether I am wasting my time applying for part time jobs.

I need the stimulation of a job and the interaction with others. Weeks can go by with the only human contact I have is with my wife or whoever is the clerk working the checkout line. It is important I feel as if I belong to something and feel good about contributing to the world outside of the home. Without it, I feel almost nonexistent which I know is not good for my mental health and can kill my desire to defeat pain and fatigue.

Tuesday: September 15, 2020

More physical therapy for me today. The more I go, the more I find wrong with my hand, wrist, and forearm. There is no doubt there is weakness in each and tenderness in the finger and wrist. Still, I am tired of rehabbing as much as I am tired of surgeries. Hopefully, over the next few weeks I will find it was worth it.

I have settled into a nice workout routine. Every other morning, I hop on my bike and do a two hour ride, with a longer ride on weekends. In between bike rides, I work out in my garage and focus mostly on flexibility, core strength, and a little weight work. I have been pushing myself hard on the bike which has resulted in me dropping some weight and constantly feeling hungry. The bike is good for me because it allows me to push myself without taking the pounding from running. There is less post ride soreness and discomfort and I can push myself more frequently than I can running.

In another month or two, the winds will arrive along with the colder mornings so it will be interesting to see how much riding I do this winter. Charlene has a nice indoor bike I can use on days it is too miserable out to ride. For now, I enjoy taking off before the commuters are out in full force and even though I am not training for any sort of event or specific goal, it is nice to push myself like I do at my age. There is a great sense of pleasure I derive from the suffering that goes into tackling a series of steep roads.

I have always tried to apply the lessons I have learned from challenging myself with my workouts to other avenues of my life. Quitting is too easy and gets a person nowhere in life. I have challenges I face with pain and fatigue and can always use them as an excuse to not workout anymore. Instead, I see them as challenges to take on and overcome knowing whether I succeed or not, I am better off for trying. It’s true with everything in life. Sometimes the only way to get from point A to point B is to pull yourself up over a steep hill. The climb up might be a bitch, but the ride down makes it worth it.

Friday: September 18, 2020

This morning, I watched our littlest dog, Athena, have a seizure. She is 15 years old and has slowed down quite a bit over the past year. She no longer walks with the steadiness or confidence she used to have and our other dogs no longer see her as the top dog of the family. They have become more caring toward her as she has become less demanding. They bathe her, sleep with her, and look after her more than ever.

Normally, she has a great appetite, but when I fed her this morning, she just looked at her food and stepped away. When I set her back down on the floor, she fell over on her side, moaned a bit, struggled to try and get up and then wet herself. She managed to move onto her other side and repeated her actions. Then she laid on the floor and tried to make sense of what happened.

I picked her up, rinsed her off in the sink with warm water before wrapping her in a towel and held her. Athena is a fighter and won’t give up, but with her advanced years and six and a half pound frame, she limits her movement. She no longer goes for walks with me and when she sleeps, she sleeps deep, unaware of what is going on around her.

When the time comes, it is going to be hard to see her pass. Despite her slight frame, Athena has a big personality and there will be a large void left when she is gone.

Today would have been my dad’s 94th birthday if he were still alive. It has been almost 12 years since he passed away from Alzheimer’s. His was a slow battle with the disease, but even prior to it, I saw his life change dramatically after he retired. He was never one to take care of himself. His diet was poor, he drank too much, he self-medicated, and he failed to exercise. As a result, his retirement plans never really lived up to as he planned. He and my mom did not get to travel as much as they hoped. He was unable to enjoy golfing as much as he wanted, even with a golf cart, because his body failed him much sooner than it would have had he taken better care of it.

Early on in my life I recognized my father did not take care of his body and I set out to do all I could to make sure his lifestyle did not become mine. I was actively involved in sports, ran, lifted weights, and rode my bike when there were no games to be found. However, I am not sure it has done me as much good as I would have hoped for.

Today, despite having very good blood pressure, weight, and excellent endurance, I still can’t help but be reminded of what I have lost in other areas. In particular, my upper body strength is not what it was just a couple of years ago. On top of this loss of strength, I have seen a return of arm pain even though it has yet to be three weeks since my last set of epidurals. The discomfort is slight and during the day, when I am able to distract myself with other activities that engage my mind, I hardly notice it. It is when the evening rolls around I am reminded just how uncomfortable it is.

Two nights ago, my pain returned and came on pretty fast and pretty hard. I needed my Vicodin and Robaxin after I gave myself an hour and a half to see whether the pain would subside on its own. Last night, while it was not as harsh as the day before, my arms were acting up. While watching TV, they needed a pillow to rest on at first. Then they needed to hug the pillow tight to fight off the urge to constantly move them in order to take my mind off the discomfort. Before going to bed, I knew if I did not take my medication, my arms would be flopping around all night and I would end up hitting my wife and dogs while they tried to sleep.

Maybe this evening will be better. Whether it is or not, I already know it is just a matter of time when my neck, shoulders, and arms are all lit up on a daily basis and requiring meds to deal with it. My hope for a two or three month reprieve from them looks to be over in less than three weeks. This most likely means future epidurals will be off the table and my choices for dealing with this pain are now less than before.

It might also mean my ability to enjoy my pleasures may be shorter lived than I planned. I have recently stopped running to see if it saves my neck from more damage caused by the impact of my strides. I have replaced it with bike rides and have enjoyed them just as much as running. My hope for being able to enjoy this activity for another ten to fifteen years may not be possible and I wonder now if I will be able to still enjoy it in another ten to fifteen months.

I have also commented before on my growing loss of strength in my arms. As they get weaker, I see the need to strengthen my upper back more as it will be called on to support my arms as their strength wanes. My options for core exercises also decreases while my need to keep my core strong increases. I have already told myself to begin planning on implementing more flexibility exercises to replace those I stop doing to strengthen my arms. I will need to find new ways to set fitness goals if I am to continue enjoying my love of working out. Otherwise, I fear becoming glued to my recliner like my father already was at my age.

I am not at the point of life where our little Athena is. However, it is humbling to know I need help with more tasks, struggle more with the ones I still do, and someday will require handing over more of myself to others. It is a thought I hate thinking about and one that can take me to a dark place if I allow it.

Tomorrow, the early morning roads should be free of most traffic. I plan to enjoy a bike ride that I hope lasts close to three hours. I will play it by ear and adjust where I go, how hard I ride, and how long I ride for. My longer, bigger goal involves being able to enjoy the activities I still love doing for as many years as I can. It may require compromise here and there, but if doing so buys me more enjoyment over the remainder of my active life, then it is a tradeoff worth making.

As much as I hate admitting it, I am at a point where I know I can no longer do what I want, when I want, and as much as I want. My dad’s body paid a price for his choice of lifestyle. However, mine has too despite being very different from his. I suppose we all pay a price sooner or later, but just because we all do does not mean I have to pay the bill now. I can stretch out the payment over more years if I remain willing to begin making adjustments. Otherwise, I will have never learned anything from my dad’s way of life or from the life I have enjoyed up to now.