Chronic: The Pain We Don’t See, Chapter 5

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Chapter 5: What to Expect 

Friday: April 10, 2020 

Then again, maybe I need to eat my words. Yesterday, I thought I was getting a jump start to get ahead of my pain by taking a double dose of pain medication at 11 a.m. I was wrong. I got slammed by pain and slammed hard. By 2 p.m., I was curled up in a fetal position on a couch trying to ride out the wave of pain that was clearly not taking my medication seriously. I thought to myself this is how people end up overdosing. I had to fight hard not to take more medication and to force myself to wait the eight hours between doses. 

From head to toe, I felt my body screaming at me. My head felt like it was being squeezed in a vice. My spine kept sending me sharp stabbing pains from my neck down to my mid back. My shoulders felt like they were being stabbed by little knives while my arms felt as if they were being pulled out of their elbows. My wrists were locked and my fingers were bent stiff and while all of this was going on with my upper body, I also felt stiff burning sensations in my hips, knees and ankles. 

By the time the pain let up, it was 4 p.m. All I could think about was how long before I could take more medication and whether it would be before the pain returned? 

I woke up this morning at 1:30 and shuffled to the bathroom, bent and stiff all over. There was no way I was going to be able to pull the covers back to get back into bed or pull them up for warmth. My fingers were not capable of gripping them and even if they were, my arms lacked the strength to lift and pull them. 

Instead, I headed out to the family room, dragged three blankets off a couch, and attempted to lay them on me so that I was covered up. For forty-five minutes, I tried to get comfortable before giving up and deciding to get my day started. 

From there, it was back to the bathroom for more pain medication, some quick mental math to figure out when I could take my next dose, and then off to the kitchen to make the first of two strong cups of coffee. My pain was now just in my arms and shoulders so unless it changed for the worse, I knew, later, I would run on my treadmill. Surprisingly, the run was relaxing and enjoyable. Just like when I was a kid, I found comfort running by myself. It was almost euphoric. 

However, by 10:30, it was time for more medication. The double dose is enough to make being awake tolerable. Besides, I had an appointment via the phone with the pain management clinic in another hour. 

Whenever I get a break of a week or two from any major pain, the first wave that hits me when a flare up happens is always the worst. I have learned I have to keep taking my Vicodin and muscle relaxants until there is no sign of any pain. It could be a day or two or it could be a few weeks. There is no way for me to know. What I do know is for the time being, until the threat of this COVID-19 virus passes, I only have my medicine cabinet and my pain tolerance to combat flare ups. 

The pain wears on me and the longer it continues, the harder it becomes to not give in and take more meds or to add alcohol to the mix. When your options are few and you become desperate, you reach for anything just to rid yourself of your misery. Like I said earlier, I get why so many end up over dosing. I fear some day I will do the same. 

Monday: April 13, 2020 

This pain seems endless. My current flare up shows no sign of letting up and once again, I am exhausted by it. It is magnified because I am stuck at home while we all ride out this pandemic. I stepped out this morning long enough to fill my car up with gas, pick up a prescription at the pain clinic, and then fill it at a local pharmacy. Tomorrow, I will do some grocery shopping and the next day I have an appointment for my hand. This will be the most I get out of the house during a week in over a month. 

My acupuncturist sent me a text letting me know she will not be opening up her practice now for another month. I have lost all my gains with her as I have gone over a month without treatment. 

It has also been a month since I got a chiropractic adjustment or a massage. I rely heavily on these preventative measures to hold back my flare ups. The three also are a big financial investment and I often question whether they are worth the money I pay. However, I have learned there are no guarantees when it comes to treating this sort of thing. It is not like surgery and physical therapy has done any better. Neither has procedures like epidurals. 

All I know for sure is I feel like I am poisoning myself by relying on Vicodin and Robaxin which is pretty much all I have at my disposal for now. I feel like all I can do now is react to my circumstances rather than get ahead of them. Worse, I’m not sure what I would do if I ever got my old self back. 

My medical bills last year were off the chart. Two surgeries, physical therapy, chiropractic, massage, the pain clinic, and prescriptions all added up to an embarrassingly high amount. This year, I have added acupuncture, talk therapy, and when this pandemic ends, TMS therapy. Is any of this worth it? Am I wasting my time and throwing away money? Am I chasing a cure that does not exist? I have become a hamster stuck on a wheel of medical treatments with seemingly no way to get off and I am worn out by it all. 

Does anyone expect me to enjoy life while my head feels like it is stuck in an ever tightening vice while every joint, muscle, tendon, and fiber feel as if they are being ripped away from my body? My head feels heavy because the inside of it seems like it houses a giant gong that is pounded on and makes a constant ringing noise. It feels as if it is balancing on a toothpick for a neck that sends stabbing pains down my spin and up into the back of my skull. At their best, my arms simply feel heavy. At their worst, they hurt to lift, bend, or extend. My fingers are stiff and my grip has weakened to the point I don’t dare try to grip something that weighs more than a few pounds for more than a couple of seconds before I feel the muscles in my forearm fail. 

Despite all of this, I make myself get exercise. I enjoyed a relaxing run on my treadmill this morning despite another night of sleep cut short by my discomfort. I followed it up with some stretching before tackling a couple of minor chores. However, by 9:30, it was back to the medicine cabinet and a hot shower because I was physically done. 

This is beginning to feel like an agonizingly slow death. 

Thursday: April 16, 2020 

I am tired. It’s 4 a.m. and I have been up for an hour and I am tired of being tired. I am tired of being in pain. I am tired of waking up and having to figure out how I want to distract myself from this discomfort. 

Like most days, my thoughts turn to what I have planned for a workout. It is the one thing I look forward to no matter my discomfort. Today, I will run for an hour. That just leaves 23 hours to figure out. It should be another warm and beautiful spring day which is perfect for working in the yard. However, I already know this is not likely to happen with the way my arms and hands are feeling. The strength will not be there to pull weeds by hand or grip a hula hoe to do the job. The strength needed to hold my cordless trimmer will also be lacking and even if I can muster the strength to use it, I know the rush of post yard work pain will be enormous. 

There is also this damn fatigue. Is it the result of the medications I use to combat this or is it from pain interrupting my night’s sleep? Either way, I am exhausted by mid afternoon. 

I am anxious and tense. It’s impossible to relax when pain refuses to let up. There’s not even the opportunity to connect with others thanks to all the social distancing, locking down, and self quarantining going on. A friendly wave to a neighbor as they walk past my driveway while I run on the treadmill is pretty much the extent of human contact available. 

Prior to the arrival of COVID-19, my life was filled with enough uncertainty. I had already stopped working because of my bouts of pain and fatigue. That was enough to already have me on a minor lockdown. Still, I was free to leave the house and go out in public to run errands or receive therapeutic treatment. I felt like I was making progress with my pain management and seeing results. I was optimistic about the prospects of TMS perhaps knocking out my need for an antidepressant and maybe even some of my pain medication. I was hopeful about what 2020 would bring. 

Now, hope feels like it is in the rear view mirror and I am not liking what I see in front of me. I hear of people who have contracted COVID-19 and how relentless they had to be in fighting it. I have read how they went through hell and were on the brink of death only to be saved. I wonder how much fight I have left in me. I question whether I would even put up much of a fight knowing my reward will just be a return to this cycle of pain. 

To fight any health challenge, a person needs a reason to live. He needs to feel he has unfinished business in this world and is willing to fight like crazy to complete it. You can be loved by others and that is not always enough. I know I am loved, but am I of any use to anyone or am I just someone who will be a memory? 

Today is most likely going to be a rough day for me. I know this simply because I know how my train of thought is trending. My pain runs deeper than my muscles, tendons, and nerves. My pain is in my heart and it is in my brain and it is in those places I need fixing in order to be able to look forward to the road ahead. 

Maybe I will feel better about things tomorrow when my wife is home for the next few days. Maybe I feel this way because this is day four of her work week and I have three days with her as company, love, and support to look forward to. However, right now, I am not in a good place and I have to focus on getting through this day and not get caught up in the larger picture. If I do, maybe it is a step in the right direction, one that leads to physical, mental, and emotional healing. 

Sunday: April 26, 2020 

The last week and a half has seen a wide range of weather, typical for this time of year. I have long suspected my pain is magnified by weather when it clouds up and turns cold prior to a storm’s arrival. However, my hope is warmer weather will usher in a break from my pain flare ups and give me a chance to feel “normal.” However, now that warm weather has returned for the last four or five days, I am reminded my flare ups are not strictly weather related. 

I am four hours into a double dose of Vicodin and a muscle relaxant and have gotten zero relief. My neck and shoulders are tied in knots, my arms are tingling down through my fingers, my elbows are tender, and the back of my head is throbbing. The trigger finger on my right hand continues to worsen. I am relying more on my left hand to grip things and know I should be splinting the finger more, but doing so makes using my right hand for anything pointless. 

My hope is the current restrictions on businesses will ease enough to where I can resume both my chiropractic and acupuncture treatments. Without them, I fear my pain is going to just get worse forcing me to either up my dosage of pain medication or remain miserable. 

I have tried to keep busy so I can focus on things that help take my mind off my pain. The problem is when I stop, the wave of pain that rushes through my body is excruciating. It is also frustrating because now that I am running more frequently thanks to my treadmill, my knees ache more. Currently, I keep a schedule of running two days in a row and doing strength and core work with rehab and stretching added every third day. My arms have nothing in them to give toward any task other than giving one of the dogs a haircut and I am unable to get comfortable enough to get any sound sleep. 

Last night was a typical night. Watching TV on the couch was made difficult because I could not get in a position to make my arms comfortable. In bed, I was able to fall asleep on my back but after a couple of hours, the pain behind my left shoulder became too much. I got up and headed out to the front of the house. I dragged two blankets across the floor having to use my splinted right hand to grip them because my left arm hurt too much. I settled into a recliner and managed a few hours of sleep but never got into a deep state. 

It’s a routine I have grown used to, but one I despise. I’d love nothing more than a solid uninterrupted eight hours of deep sleep in the comfort of my bed. Unfortunately, it’s not possible. Until I can get back to the treatments that help me function better, I know I have more pain awaiting me. I try telling myself this is temporary, however, I am unable to see a light at the end of this tunnel of pain and until I do, I am going to question how much more of this shit I can take. 

Friday: May 1, 2020 

I have spent each of the last three days working on the patio I built four years ago. It began with having to replace a joist that cracked. Since I had to buy a 2×4 to replace it, I decided to buy several so I could add more cross braces. From there, it was climbing up top and installing a new temporary shade cover to keep the sun from beating down on the concrete. Today, I installed new roll down blinds that will knock out most of the UV light. Combined with the top covering, the back patio should now remain nice and cool which will allow us to leave the back slider open so cool air can circulate through the house. 

This is the kind of work I enjoy and yet I put it off because I knew there was going to be a certain level of pain following each day of work. I managed to time my pain medication just right which limited the amount of post work discomfort I felt. However, there is more than just physical discomfort that accompanies my chronic pain. The other part of the equation is fatigue. I have noticed over the last few weeks my level of fatigue has increased greatly. 

Having felt a good deal of fatigue on Wednesday and Thursday, I opted not to run either day. Instead, I did lighter workouts involving core and arm work before tackling the patio. Today, I decided to run but by the half hour mark, I was done. Mentally and physically I felt empty so I cut my run in half and hoped to have some more energy to run tomorrow. 

Sinking (Tim Forkes)

My big concern is this is the same type of fatigue that led me to my doctor ordering blood work last year that showed a low white blood cell count. This led to seeing an oncologist who ran more tests. Those tests resulted in a normal WBC count, albeit, one that was on the lower end of the acceptable range. At the time, the oncologist informed me if I was sick with something serious like cancer, the count would not rise back up. Now, I feel like I did last year and I wonder if I should ask for more blood work. 

This all comes back to my frustration of just wanting a clear answer to all of this. I can understand why I have the pain given the status of my neck. However, why all the fatigue? Is it the result of pain wearing me out? Is it because I am not busy enough and just bored mentally? Is it all in my head and something I have manufactured? Or is there another cause? 

What I do know is I am tired of it all. I am tired of feeling hesitant about finding another part time job when I have no idea how I will feel on a daily basis. I am tired of being cooped up at home and feeling like I do not contribute to this world. I feel stale mentally, weak physically, and anxious emotionally. 

Fatigue is a huge weight that drags us down. Chronic fatigue is a weight that sinks you to the ocean floor, leaving you wondering if there is any way to free yourself from it so you can move forward. 

All I know for certain is it is not even noon yet and I need a nap. Maybe I will awaken refreshed and in a better frame of mind.