Chronic: The Pain We Don’t See, Chapter 21

Top illustration by Tim Forkes

Chapter 21: What Lies Ahead

Friday: January 1, 2021

I have never been one to make resolutions for the new year. It never made sense to me to resolve to change what you do not like just because a new year has begun. Why wait?

Last year, when I decided to make the effort I have put in toward knocking out my depression, pain, and fatigue, the new year had nothing to do with it. I was simply worn down and knew it was time to get ahead of these problems. Had I reached that point any other time of the year, I would have done the same thing.

I suppose if my depression had not returned like it did, I might have continued on the path of life I was on. I would have not gone to see a therapist. Acupuncture, TMS, herbal remedies, and keeping a pain log would never have happened. Once I began writing my log, it just seemed natural to share with others what it is like to live with chronic conditions that are greatly misunderstood by people who do not suffer from any.

Knocking out a chronic condition in a culture built around quick fixes, fast food, and instant results is not easy because it takes a great deal of patience and resolve. Now that the entire world has lived under the blanket of a pandemic, we have all had the taste of what life is like when what is perceived as normal is taken away. It is not unusual for sufferers of chronic illnesses to live a life of self-imposed lockdown. Removing ourselves from what the rest of the world enjoys comes all too easy when you hurt physically or emotionally.

It is no surprise to me as this pandemic moves into its second year we see a rise in mental illnesses. Days drag on while we wait for a vaccine and a return to normalcy. The depressed, the hurt, and the tired know this all too well and our chronic battles become magnified when no one seems to be able to relate to our challenges. At least with this pandemic, we are all in this together. However, when you are in constant pain or shrouded in a fog of depression, you feel alone. You see yourself as not much more than a single drop of water in a gigantic lake.

There are not many people who will say 2020 was a wonderful and joyful year. It was marked by death, disease, and discord. That said, it has ended with a ray of hope in the form of multiple vaccines coming out and a world being offered hope that in another year this pandemic may be behind us.

Whenever that time comes, it is important to understand not all of us will be out of the woods. Loved ones, friends, and colleagues as well as total strangers we encounter will still suffer from unseen chronic illnesses. They may struggle to see and feel the joy others will and they can easily be left behind as the rest of the world moves forward.

For me, 2020 ended in great physical discomfort, just as it began. It was the sort of pain where if going out in public and doing things were possible instead of frowned upon due to this pandemic, I would have opted out of doing so. My first dose of pain medication came early in the day and my final dose was taken just before going to bed. Pain has no calendar. Its disregard for all that we know as normal makes knocking it out all the more challenging. Knock it out with an opioid and it returns to the point you have to rely on more. Eventually, the opioid becomes as much a part of your problem as the pain.

Depression is no different. If you are fortunate and find an antidepressant that works, eventually you build up enough of a tolerance to where it stops working. You then have to take months to cycle off it before beginning the process of trying to find a new one that works. In the meantime, your depression takes hold and you go to dark places. Thankfully, with TMS, there is now a drug free approach that offers the sufferer hope for a happier life.

Then there is fatigue. Day after day where holding your head up and keeping your eyes open is a constant chore only to find falling asleep or remaining asleep at night impossible. Mental sluggishness sets in either from sleep deprivation or the reliance on sleep medication.

The three of these chronic problems are also commonly intertwined which makes it all the more daunting when it comes to wanting to rid yourself of them. Where do you begin? The enormity of the task is so great it is easy to see why people just give up. At best, they resign themselves to a life of constant discomfort and at worst, they choose to end theirs. There is no simple or affordable vaccine to knock out what can strike anyone at any time in life.

I have no idea what lies ahead for me as I continue my fight. What I do know is it is not over and never will be so I have to choose how I go about playing the hand I have been dealt. For now, I know it does not include folding. TMS was my ace last year. It has allowed me to enjoy greater clarity and see my challenges as far less daunting as they seemed a year ago. Whether a person thinks they can or can’t, they are right. I am now at a point where I know I can and will continue to move forward despite occasional challenges like my pain has posed recently. I can turn my focus to new possibilities and opportunities and get back more of the life that has been missing for too long.

Sunday: January 3, 2021

I am reminded of how much improvement I made the past year and all because of how horrible I have felt the past few days. Yesterday, the misery index was 9.5 on the pain scale. It began before I rolled out of bed and continued until I called it a day. There was not a moment I was not reminded of how terrible my body felt.

Using my arms just to push myself up off the mattress has become more of a challenge. Shockwaves of pain that shoot up into my shoulders are now coupled with enough weakness, I struggle to have the necessary strength for the task at hand. As I sat up on the edge of the bed, my head throbbed incessantly, my ears were filled with an array of clangs, pops, and rings, and my neck was so tight it made any rotation agony. As I stood up, my spine just below my neck and slightly above my midpoint of my back felt like a hot poker was branding it. My arms hurt too much to let them hang freely so I kept them pressed tightly against my body.

All my usual areas were hurting at their highest levels, but to add to my pain, the back of my rib cage felt like I had been hit with baseball bats, my low back was locked up making it impossible to stand straight, and to add insult to injury, my hips, glutes, and quads felt as if I ran a marathon the previous day when in fact, I skipped my workout and pulled an eight hour shift at work.

As my Saturday lingered, the pain clung to me making my every movement an exercise in discomfort. I forced myself to workout lightly but at no time was I able to loosen up my kinks. My only options were to either gut it out or head to the medicine cabinet for some relief.

However, as I said earlier, I also became aware of my improvements from the past year because my frame of mind remained positive throughout the day. Mentally, each day, I feel my depression is another step further behind me. My self-talk remained positive and I kept myself engaged in other matters instead of becoming consumed with my painful plight. This would never have been the case a year ago and was a major reason why I realized I needed to find ways to get ahead of my problems.

Today is not any better than yesterday, at least not at five in the morning. Still, I remind myself I am one day closer to my epidural procedure on Tuesday and if all goes well, relief will be here before the end of the week.

I am also holding up in the fatigue department and have not become completely drained from battling my pain. Pain, depression, and fatigue are linked together, but each can also strike individually. Despite being outflanked by an invasion of pain, I realize I am lucky that it is just pain and not more. I could be getting hit from all angles in a threefold attack. Instead, I can focus on just trying to knock out one enemy which makes this flare-up seem less daunting.

Normalcy and understanding go a long way toward helping someone dealing with invisible onslaughts. Charlene is wonderful in doing this. She has her own struggles and she models so well to me the importance of trying to maintain life as we know it. Errands need to be run. Household chores do not go away. And in our case, five dogs rely on us. Charlene has the added burden of dealing with her mom’s failing health and has been left on her own to take care of what appears to be her final days. Her stress, grief, and pain far outweigh anything I am experiencing. I know now, more than ever, the last thing I need to do is add to her difficulties.

Feeling right in my head makes me process all of this with clarity that does not exist when dealing with depression. We share each other’s pain, empathize with the other, and know we have support from each other. With a clearer head, I am learning to listen better, feel what others feel, and see the world past the self-absorption that can come when you are unable to see past what ails you. Knowing I am not alone is comforting. Knowing there are others who carry their own unique pain brings me back to reality.

I hate having to go into work today knowing my wife has so much on her plate. In many ways, I feel fortunate knowing I will have a distraction to what ails me while she must use her day off to get as much done as possible before her work week arrives tomorrow. Mental and emotional stress is more challenging to deal with than the discomfort that comes with physical pain. The stress becomes a weight that slowly increases until we can’t take it anymore. For the person who feels alone in the world, it can break him which is why if you know someone who suffers from what the rest of us cannot see, the best thing you can do is let them know they are not alone. Loneliness makes giving up all too easy.

For much of my life, from childhood until recently, I learned to retreat into my own world. I found solace escaping from what I did not like. Over the decades, what I thought was an effective tool was actually part of my problem. It sent the message I wanted to be left alone when in reality, I just lost faith in people by asking for help. If I believed I created my own problems, it made solving them on my own, or at least attempting to, much easier.

Wave after wave of depression and pain left me treading water on my own. If I even accepted a friendly offer of help, what would that person think? The weak asked for help, or so I was led to believe, which made it easy for me to internalize what I experienced. I’ll let my siblings do this because I know it will just add to the burdens of my parents. I will make others laugh just so they do not suspect I hurt. I’ll suck up the pain so as not to let down my coach or teammates. I mastered swallowing to the point I was choking on myself and all because I did not want others to see me as weak or flawed.

Now, at 62 years of age, I care a lot less how others perceive me and more about being an example for those who live with what the rest can’t see or understand. How can anyone help you if they do not know what ails you? It seems simple, but when you hide behind shame, insecurity, or a culture’s ignorance, it becomes easy to keep your pain hidden until it is so great, it is impossible to hide.

Not talking about things does not make them go away. They get buried under mounds of issues we keep to ourselves until there is no place left to bury them. As each day passes, I now dig away more loads of the dirt I have piled onto my problems. As I do, I lighten my load. At first, it was overwhelming, but as I dug away, eventually I reached a point where I lightened enough of my load that I realized I am closer to being free from all of it than I am from being buried under it. Today, I still have mounds of dirt that need disbursing. However, what was once mountains of pain, fatigue, and depression, are closer to being nothing more than mole hills.

Tuesday: January 5, 2021

You never know what direction your life will turn or when it will require a big change in direction. Two months ago, if you told me I would be overseeing the upkeep of an 84 unit motel, making all the necessary repairs and improvements, I would have said you were nuts. If you would have added in I would have worked under three different temporary managers while my boss was knocked down with Covid for six weeks, I’d say you were off your rocker. You never know what will happen.

Yesterday, after work, the head of housekeeping was expressing to me her growing frustration over the poor work ethic of one of our employees and how it is not setting well with others. She feels this person is not cut out to work at the motel despite being given several chances to work at multiple jobs with the hope something inspires his interest. While discussing this person, she noted that she and the other cleaning staff notice the pace I maintain despite my being the oldest person on the staff while this other person lags or goes missing.

It was another rough day for me even though I only worked a four hour shift. A horrible night of sleep followed by day four or five of a worsening headache to go along with all my other aching, tense, and locked up body parts made me question what I was choosing to do given I don’t have to work. However, work is my solace. It helps take my mind off of my discomfort. By the end of my shift, I thought about what I got done and left feeling good about my contribution even though as soon as I got home, I headed right to the medicine cabinet

I try to keep my struggle with pain to myself from the folks I work with. It goes back to my childhood when I learned early my dad, the doctor, did not want to hear about it. A few on the cleaning crew are young women in their 20’s. They are tireless workers who are often assigned to clean fifteen rooms a day after they have been abused and trashed by people who think nothing of how they treat a place for a night. The physical demands of their work puts them through a grueling workout every day and their wage is nowhere near what they deserve. The thought of kicking back and taking it easy while they have to work tirelessly to ready every room they are assigned never enters my mind. If I am fortunate enough to have a slow day of repairs, I try to pitch in and lighten their load by hauling their dirty linens down to the laundry room.

My epidural procedure is just a couple of hours away. I know what to expect from it and the only question I have is how much relief will I get? If it works as well as my last one, I should have a couple of months before I notice it starts wearing off. The key with pain management is keeping ahead of it. However, it became impossible this time since I had to wait five weeks from when the request was submitted for today’s procedure. Since I began my current job just as the previous epidural was pretty much done working, I have no clue how my body will respond after eight hours of work. My fear is the epidural will not be as effective and my pain will return much sooner. Time will tell.