Chronic: Pain We Don’t See, Chapter 7

Top photo by Tim Forkes

Chapter 7: Dodgeball Tuesday: June 2, 2020 

Where do I begin? I am trying to process so much that I can’t make sense of anything. I just feel like escaping somewhere and being left alone to watch the surf and forget about the world I live in. 

I did not set out to write about politics, but there is a direct link to the events of the day and how I am feeling emotionally, mentally, and physically. There is just no escaping it. 

Since the murder of George Floyd and the resulting outrage over his senseless death, the nation is torn apart, much like my body was on June 16, 2007. There is no simple fix to what has happened inside this nation and there is no way of knowing what will unfold when we are led by a president who has clearly come unhinged and is encouraging more anger and violence as a political strategy to keep from facing defeat in his re-election bid. 

To watch a nation split apart and turn on itself with the encouragement of a mad man does not set well with me. It is bad enough I tend to overthink things which magnifies my situational depression. Now a situation exists that is real and can’t be tuned out by anyone who has an ounce of concern for the well being of our nation’s future. 

As the rioting, tear gas, and bombastic statements rip us further apart, I am also in the midst of my own personal war, one I feel I am losing on several fronts. Do I distract myself from this personal battle by throwing myself into the fight to defend our nation’s future, knowing my inner torment will still be there waiting for me, or do I tune out all the bullshit in the world and be selfish by focusing on just me? 

Yesterday, I came close to checking myself into the ER. I woke early as usual and within minutes was in need of pain medication. My head was throbbing, my ears were ringing, and my spine was on fire. I felt like I was on a stretching rack being pulled and ripped apart at the limbs while surges of electricity fired down to the tips of my fingers. The two Vicodin and one muscle relaxant I took at 5a.m. worked quicker than usual, well enough for me to put in some work in my gym and take the dog for a walk. 

However, by ten o’clock, I was miserable again as I headed off for my TMS treatment. When I returned home an hour later, all I could do was think about whether or not I could make it another two hours for when it was time for my next dose of medication. By the time I took it, I was nauseous from the pain and incapable of thinking of anything but how much more of it I could take. I curled up on my bed with three of our dogs and waited for the medication to kick in and hoped to sleep. I gave up on sleep at 3:30, but took solace in noticing my head was no longer pounding. An hour later, the only signs of pain were in my elbows and radiating down to my hands. 

While this was happening, our president was tear gassing a peacefully assembled crowd across from the White House to show his boot stomping fan base he is a tough guy. It was nothing more than a play to his gun-toting fan base and another desperate attempt by an unhinged leader to gain the upper hand of yet another crisis he has made worse. His poll numbers are dropping, but the people who support him the most have dug in deeper and are willing to do anything for this person. He knows it and uses it to his advantage. 

I am alone all day with nothing but my thoughts which end up being my worst enemy. My wife came home from work and all I told her was it was a rough day for me on the pain front. She does not need to hear it and have it weigh her down while she works and has her own worries. It’s a perfect shit storm for a man who has lost all control of his own life at a time when all hell has broken loose in the country. 

Today, after a long night of interruptions, I have woken in the same place as yesterday. My pain is not quite as extreme so I am torn about whether to medicate now or later. I will go to TMS in a few hours and hope when I return home I feel well enough to get a few chores done around here. My mood is no better than my pain level and my hope for personal improvement is about as low as it is for calm to return to a divided nation. 

Most likely, I will spend time trying to help the mood of others because that is the pattern I have followed. Bring cheer or laughter to those hurting; offer encouragement to people who are suffering; and keep to myself the real torment I am experiencing because for some strange reason I think it is my duty to be a source of strength for others. I feel I am more sick than I am strong and I no longer know what direction to turn to heal. 

What is the magic ingredient I am missing in my life that will turn it around? Is it possible to heal my depression as long as I am in so much pain? If I rid myself of my pain will my depression go away? What about my heart? How does it heal from the disappointments I have experienced that prevent me from fully trusting and loving others because I fear being rejected again? It’s all inner woven and the weight of it all has crushed my spirit. My house of cards has collapsed once more and I have to find it in me to rebuild it better than ever. I understand this, but question whether it is possible. 

Friday: June 5, 2020 

Yesterday was a reminder of the enormity of what I am up against. People often think those who suffer from depression are just sad. They think people with chronic pain just have some constant aches. They see chronic fatigue as if you are not able to feel alert. These are totally inaccurate simplifications made by people who can’t possibly know what it is like to suffer from one of these problems. Try explaining to people how all three can be connected. 

My day began with TMS and immediately after I met with the psychiatrist who oversees the treatment. In our discussion, he let me know the dose of my antidepressant was actually considered a low dose and he offered to increase it. All this time I thought I was maxed out on my dosage. I might have said yes if I was not doing TMS. However, as I explained to him I want to be able to compare any benefits I receive in the coming weeks to the TMS and not the possibility of a higher dose of an antidepressant. Besides, I had my dose increased two years ago and know it is just a matter of time another increase fails to work. 

From there, it was off to meet with my therapist. My hour with her helped me to see just how many ways I have been affected by a variety of traumas and how they show in my behaviors and feelings. Basically, I am in a constant state of fight or flight, even when I may seem calm and in control. I am continually reacting to the people and events around me rather than being able to logically remind myself of what I am in control of and how what is bothering me is just temporary. It all made sense while also seeming to be easier than it appears when it comes to changing. 

After hearing me tell her about my most recent flare up of pain and how useless I feel as a result of how it affects me, she said, “I don’t know how you do it.” 

When I asked her to explain what she meant, she went on to tell me how most people who have been through what I have experienced end up becoming addicts. I can see why they do too. Pain and trauma come in many forms, but when it is constant, or the affects of it are, you just want to escape the world you live in and forget about everything. Alcohol, drugs, and sex are the preferred choices of men. I’d be lying if I said the urge was never there because I often feel as if I am just wanting anything that will take my mind to another place. 

My day ended with acupuncture. My acupuncturist reminded me again there is no quick fix for what ails me and her goal is to just help me manage my pain. She had to tell me again there are some matters I am dealing with that are never going away, but if I am patient, she can help me get to a better place. The problem is, time costs me a lot in the form of payments for treatments not covered by my insurance. 

By the end of the day, I felt like a lone target inside a circle surrounded by people throwing balls at me. How do you keep from getting hit when they come at you from every direction? What do I concentrate on first while ignoring other things? You just want two or three bodies with you to help deflect what you are being barraged with, but in the end, you feel isolated, alone, and wanting to just take the easy way out. 

My acupuncturist says my body basically has a rechargeable battery that is no longer able to be fully charged. This results in my constant fatigue. By fatigue, I mean the kind that results in feeling physically empty. One example of what fatigue is like is going into the kitchen to make a sandwich and when you’re finished, you no longer have the energy to eat it. Worse, the thought of doing so makes you nauseous. 

When that fatigue is the result of chronic pain, the task of making that sandwich hurts. Opening the refrigerator sends shock waves of pain through your shoulder. Gripping the handle reminds you how stiff and sore your knuckles are. Even lifting the sandwich to your mouth can make you wince in pain. In the end, you have derived no pleasure from eating what you just made so the next time you are hungry, you tell yourself not to bother eating because it hurts too much. 

With both pain and fatigue, sleep becomes a challenge. You lay in bed and are reminded of how tender your elbows are, not being able to sleep on either side because of the instant discomfort you feel, and how you are left to lie flat on your back until you can’t remain in the same position any longer. Now add in a mind that is in a constant state of fight or flight, and suddenly, sleep is a luxury you rarely enjoy. 

Last night, I had for me, a sound night of sleep. I got less than seven hours, but it was the longest stretch I can remember sleeping in a while. I had to sleep in my recliner to get it because my neck, left shoulder, and both elbows can’t get comfortable if I am in bed flat on my back or on my side. The armrest on my recliner helps take pressure off my arms and the more upright position prevents my shoulder from falling back and impinging a nerve. 

Last year, my sleep was limited to stretches of two or three hours so I found a temporary job I could do on my computer while awake in the middle of the night. I could use another job like it. 

Now add in medication. Vicodin and muscle relaxants do not add to a person’s alertness. They make you drowsy which means either sleeping away your days or relying on caffeine. You are left taking a stimulant to counter the side effects of a narcotic which you need for your pain which causes your fatigue, but you can’t sleep because your mind won’t shut off. 

It does not end there. Today, I met with my doctors at the pain clinic. I have agreed to get epidurals for my neck with the hope that if they work I will be able to stop needing the Vicodin to combat my pain flare ups. I am also going to keep on hand two different drugs that are not narcotics for when my pain is on the high end of the pain scale, but will knock out inflammation. Both are for more extreme situations where I am not getting any relief from my Vicodin or muscle relaxant. 

What I really want is my life back. I want to know what it feels like to be “normal” and to not be in a state where I feel I am at war with myself. Is it even possible? Will I at best be like a cancer survivor who once they reach the five year cancer free mark will still always wonder if it will return? Am I always going to have to be someone who never knows what to expect day to day, or worse, hour to hour, how I will feel? Is this all in my head? Am I wasting my time chasing an impossible dream? Or is there the possibility I may someday see my depression, pain, and fatigue as things of the past? 

Wednesday: June 10, 2020 

In the five days since my appointment at the pain clinic, my pain level has been moderate for the most part. This leaves me feeling on edge. There is a constant level of discomfort that at its worst causes me to hit my pain meds to keep it from getting out of control and keeps me wondering whether I am about to enter a pain free stretch or have a flare up again. This uncertainty results in a continuous state of anxiousness and this eats away at me throughout my days. 

I like knowing what lies around the corner. I gain comfort from consistency that allows me both a sense of purpose while allowing me the freedom to follow my pleasures. When you deal with chronic pain and your favorite pleasures are physical in nature, something has to give. Either you suck it up and do the things you enjoy knowing you will suffer the consequence or you stop doing the things you enjoy most and hope your pain is minimal. 

Simple tasks are less enjoyable when you hurt. Try reading a book when you are in pain. Try reading one when you are on pain meds. Following the plot of a novel becomes impossible so you turn to reading much shorter things like news and current events. In their place, I try to exercise my brain doing crossword puzzles. 

Watching television or movies is not much different than reading. Try to get comfortable enough so you do not feel pain and yet are not so comfortable you fall asleep. Then there is the issue of following story lines. Even remaining focused during a conversation is challenging. Just ask my wife and she will tell you how much she has to repeat herself to me. Deriving simple pleasure in the midst of pain becomes both physically and mentally exhausting. 

Last night, my wife and I were exhausted and we crashed around 8:30. It wasn’t even dark yet. As usual, I had no trouble falling right to sleep. Also as usual, I was no longer able to remain in our bed by 11:15 because of pain. Lately, it has been my left shoulder which I had surgery on a year ago. I think I wasted my time having it because it isn’t any better. Despite all the repair work and physical therapy that followed, I constantly have pain behind it in the shoulder blade area. I am told it is more nerve related and linked to issues in my neck. All I know is I am lucky to get more than three hours of sleep on my back before I have to get up. There is no point trying to sleep on either side because doing so just makes matters worse. 

It was back to the recliner with the hope of some decent sleep. Eventually, I gave up and was up at 2:30 and drinking my morning coffee. It is now 90 minutes later as I write this and it still hurts to raise my arm. I know I need to torture myself and hit the tender area by rolling on a hard ball. The idea I have to inflict pain to ease my pain is not something I look forward to, but I know I need to do this three or four times a day if I want any relief. 

It seems all roads lead to my neck on the pain highway. My hands, forearms, elbows, triceps and shoulders all suffer as a result of the damage to it. However, as long as the surgeon I trust tells me there is no guarantee that it comes from neck surgery, I remain stuck in this state of uncertainty. Since I also have significant narrowing of the pathways the nerves run through outside my neck, fixing the herniated disks only ensures me of post surgical pain, another rehab, along with a neck with significantly less range of motion. As for the discomfort down my arms, I am told it will remain because they can not perform any surgery on the affected pathways. 

And so, with each passing day, my frustration and anxiety grows as does my struggle with depression and fatigue. My window for hope closes a bit more and I have to find a way to make peace with all of this so it does not end up eating me alive.