Chronic: The Pain We Don’t See, Chapter 12

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Top illustration by Tim Forkes

Chapter 12: From Bad to Worse

Tuesday: August 18, 2020

I am not sure how many more days like yesterday I can take. What I do know is it was not a day I want to see repeated in a long time.

Yesterday was one of those days where I hurt everywhere. It was more than just the usual level of neck and arm discomfort. That pain by itself was at a high level. Much of my day was spent with muscles in my back, hips, legs, and feet feeling as if rigor mortis had set in. The simplest tasks became reminders just how much my body can lock up and ache. Reaching for a glass to get a drink of water, putting on my socks, and just getting up from a chair and walking to the front yard to get the mail all sent wave upon wave of nauseating pain.

There was nothing I could do to get a break. I took my first double dose of Norco with a muscle relaxant at 10:30 in the morning. It did not kick in until around 1 pm and even then, it never fully knocked out my pain. By 5 pm, I was needing more medication but knew the eight hours between doses would not be up for another ninety minutes. I tried to distract myself working in the kitchen, but 40 minutes later, I couldn’t take it anymore so I took my second dose.

By the time my wife got home from work an hour later, I was a wreck. I just wanted to curl up into a ball and hope to sleep things off, but there was no way to get comfortable. I have over two weeks before my epidurals and I want so badly to hold off on the SPRIX nasal spray, but if today is like yesterday, I may have to change my plan.

It is now 1 am and I have been up for almost an hour and still have one more to go before I can take more pain medication. My sleep was brief, just three hours, and constantly interrupted every time my body made the slightest movement. There are times I can tell I am going to be in a lot of discomfort if I do not do anything to ward it off and this morning is one of those times. There is tenderness in each elbow, sharp pain in each shoulder and aching in my hips and knees.

My eyelids have grown heavy and I will soon head out to the recliner with the hope of catching more shuteye before the day gets going. Maybe I will feel better after a few more hours of sleep. Maybe I will be able to tackle the lawns and yard work without it doing me in. Maybe today will be kinder to my body than yesterday.

What I do know is two weeks can feel like a lifetime of hell waiting for a procedure for my pain when I am in as much distress as yesterday brought me. Today will be a make or break day. If I cannot get past this pain, it will be onto the Toradol. For the person who does not live with this type of pain, it might not seem like a difficult decision to make. If one drug is not working, try another. For the person who does go through the kind of pain I am feeling, managing the resources I have access to, but that are limited, becomes a major decision.

Sleep, like many other things we do that we do not think about, is a challenge. I am in much need of some and hoping if I can get comfortable in my recliner. Maybe when I wake up and begin my day, it will be a start of one that is easier on me than what I went through yesterday.

Friday: August 21, 2020

The one constant in my day to day life is there is nothing that is constant. Horrible days of pain have been followed by days without any. Long nights of poor sleep are followed by nights where I sleep soundly. And then there are days where there are mild to moderate levels of pain. There has not been any consistency.

On Wednesday, I had a Zoom meeting with my psychiatrist. He decided to cut back on my dose of Cymbalta, but does not want to totally eliminate it just yet. He said he feels I no longer need it for my depression since the TMS has done such a great job knocking it out. However, he pointed out the drug has many therapeutic uses and among them is it is helpful for patients with chronic pain. If my pain diminishes more, I can remove the antidepressant from my drug therapy.

I also met with the PA of the surgeon who performed my hand surgery last week. She told me it is not unusual for the trigger finger to take a few weeks to go away because of the swelling I have. She says to just hold tight for now and she will check on me again next week.

It is midday and we are in the second week of hotter than normal temperatures and higher than normal humidity. It is the type of weather where the window of pleasantness is tight and I try to cram in what I can before succumbing to it and retreating to the house and the comfort of a fan.

Earlier, I went for a two hour bike ride. Twenty minutes into it, my rear tire went flat. This was not expected since I have gone to great lengths to ensure my tires do not get flats. However, there are no guarantees, especially when riding a bike along busy roads.

This was the first time I have had to change a flat tire on a bike in over four years. It was also the first time doing so on the bike I have which has disc brakes. I was concerned when it happened because I was not sure whether I would have the dexterity and strength in my fingers to remove the tire and old tube, install a new tube with the tire and get it pumped up. While the tire change was slower than what I was used to doing them in, I was pleased I was able to do the entire task. Once I was finished, off I went and enjoyed the remainder of a two hour ride.

There are days my fingers just do not work so great. Had today been one of them, I would have had to call my wife and ask her to come get me. While I hate getting flats, today was a victory for me. My fingers passed the test and for that, I am thankful. Small victories added on top of one another eventually result in having much to feel great about.

Tuesday: August 25, 2020

Seven months into this attempt to knock out my chronic pain, fatigue, and depression and I realize I am only one-third of the way to my goal. TMS has worked wonders for my depression and I no longer find myself feeling the lows I felt and questioning my life of physical misery. However, the pain persists and with it comes fatigue and until they are knocked out, I will be limited in what I can do.

My arms remain in a constant state of discomfort where the pain ranges from mild to extreme. When it is on the low end, I am usually able to ignore it by involving myself in something that allows me to turn my focus away from the pain. On slow days, this might include working on either a crossword or jigsaw puzzle, reading about current events, or doing chores around the house. However, on the bad days, there is no escaping it.

This morning, after a bad night of sleep, I woke with sharp pain radiating up and down between my elbows and deltoids. My neck was stiff and I also had a bad headache. At least I did not feel nauseous which is what I have felt the last few mornings. I woke at four and by 5:30, my pain was worse. Since I was planning to tackle the yard work after my workout, I held off on going out to the garage. I ate breakfast and began a crossword puzzle, but my pain kept increasing. By eight, I was taking my first dose of Norco and a muscle relaxant.

I did not feel like working out or doing the yard work. However, I told myself I had to get myself moving and hope it would help ease my discomfort. After an hour of light gym work, my headache was gone, but the rest of my pains were still with me.

I eased myself into the yard work figuring if I began with some light stuff, maybe I would feel up to doing all the lawns and some weeding and trimming. I am used to pain and I have learned how to suck it up and move forward. I did it as an athlete in my younger years and have continued doing so ever since. When I finished, it was 11:30 and I felt empty. Three hours of work in the gym and yard, none of it anything that would have broken a sweat a few years ago, was enough to make me want to curl up in a ball.

Showering, food, fluids, and more attempts at distracting myself and the pain remains. I have another two hours before I can take more medication and there is no guarantee it will work. It sure didn’t this morning.

So many people, as they age, begin losing strength in their legs which makes the risk of falling much greater. With me, it has become clear the loss of strength in my arms far outweighs any loss of strength in my legs.see it most when I do pushups. I am proud to say in 2011, I did a single set of 80 pushups. It was not uncommon for me to include between 150 and 200 pushups over the course of a strength workout.

Not all that long ago, I included three sets of pushups in my strength sessions and still managed to complete between 100 and 120. However, over the past month, I have been struggling with them. Some days, it is all I can do to complete a single set. Today, I managed three sets, but it became evident to me I was no longer able to complete a first set of 40. It was a struggle to complete 35. It has been almost a month since I cranked out a set of 40. Along with the drop off in my pushups, I have begun noticing a decline in strength in my other strength exercises.

Perhaps things will improve next week after my epidurals. However, I know I cannot live on epidurals or other pain relieving medications and think my strength will return. Coping with pain is one thing even if there are variables that can influence it. However, strength is easily measured. A person can either do X amount of an exercise or he can’t. For me, to know I no longer have the physical strength to perform certain tasks and that the rate of drop off in my strength far outweighs what it should for someone my age is unsettling.

I am only 62. I have more endurance than most people half my age. Unfortunately, endurance doesn’t help when it comes to operating a cordless trimmer or lugging in the groceries from the car. Endurance is only part of the fitness equation. For now, it seems it is the only part I have working for me, just as TMS has allowed me to not worry about my depression. However, this is not enough for me. I have a ways to go before I can be satisfied with my total self. Thankfully, I have the endurance, both physically and mentally, to continue.

Thursday: August 27, 2020

I keep thinking I am going to catch a break only to get hit with a new challenge. This time, it is more of an annoyance, but it is one I can do without.

Yesterday, I had another follow up on my recent hand surgery and was told I needed to get started on therapy for it right away because there was becoming a greater risk of me losing any chance of regaining full use of the ring finger on my right hand. What I thought was going to be a simple fix to my trigger finger has now turned into a bigger concern and I am beginning to wonder if I should have just lived with the finger the way it was.

I was able to get into see an Occupational Therapist today for the first of six weeks of therapy. Maybe this is tied in with my neck related pain level increasing with every day, but I just found myself lacking any interest in what is a small issue when compared to my greater ones. Part of me feels like just having the finger cut off so I can be done with it and move on. I had to remind myself I am lucky I have the time and the insurance to go through therapy.

It has been difficult to feel thankful for my health coverage when each day that passes I am in increasing pain. My days begin with a throbbing headache, one that does not let up. I struggle with my strength workouts, yard work, and little things like picking up a dog that weighs less than ten pounds to sit in my lap. My pain medication is increasingly less effective and I do not dare add more than the double dose I have been taking of late. I am just trying to bide my time until next week’s epidurals and am crossing my fingers they do the trick.

I am back to the point where eating is even a chore. If I have to stop and make something to eat, I decide it is not worth the pain and just go hungry. I graze on cashews, pistachios, and organic chips instead of making myself something to eat. I rely on my B-12 tablets or mixes to add to my water for a little boost of energy. I am no longer able to distract myself enough to forget about the ringing in my head, tearing sensation in my shoulders, tenderness in my elbows, or throbbing down my arms.

I am not depressed nearly as much as I am just worn out from it all. Even sleep hurts. Each night I try to sleep soundly only to awake with pain after two hours. I can’t get comfortable on my back or either side. The recliner used to help me sleep, but even that has become uncomfortable lately. I get up from the bed and try to distract myself from my pain by going online and reading until I start nodding off. Then it is out to the recliner before I am up around three. I go online again and then head to the couch for a little more sleep before the dogs are ready to get all our days going by 5am.

When my finger locks up in a curled position, I know I managed a little deep sleep. It is the only time it really locks up and hurts to try and extend it. Otherwise, it only slightly curls and will extend without too much difficulty.

I think about drinking more because I know alcohol will increase the effect on my narcotic and muscle relaxant. I also know it will not do my liver any good and will result in feeling like crap the next morning. Still, I know deep down a shot or two of gin will make me forget about the world of pain I have been living in lately.

This is where I try to draw on all my years of training. Running and biking have taught me how to suffer. Interval sessions on the track or long steep climbs up roads force a person to either push through pain or give in and quit. Convincing myself I can run one more hard sprint or last for thirty more minutes on a bike despite being out of fluids and food has helped me to break down my pain into smaller segments. Right now, I tell myself I just need to get through another week and I will be rewarded with epidurals. If the pain gets worse, I will break it down to an hour by hour basis if necessary, just so long as I make it to September 2nd.

My wife will be home shortly after having worked the jobs that used to be done by two people and is now done by just her. She will be worn out and rightly so. She deserves to have someone to come home to who she can enjoy being around. My pain meds are not doing a damn thing for me today and it is another four hours before I can take more. I will need to suck it up and do all I can so she feels good about being home. She has enough on her plate just as I have enough on mine. This is no different than a hard training session. I can get through this and once I have, I will be better off.

Tuesday: September 1, 2020

All that has kept me from going to the ER today is knowing tomorrow I have my epidural procedure. My pain has been increasing with each passing day and today it seemed to just skyrocket out of control. It has been over two hours since I doubled up on my Vicodin and also took a muscle relaxant and I am still nowhere near feeling comfortable.

Last night, I gave up trying to sleep in my bed after just 20 minutes. There was no getting comfortable. I was unable to find a pillow that did not make my head feel like it was getting pulled off my neck. My arms were in full flareup mode with sharp pain behind each shoulder and the sensation I was being stabbed by little knives in my upper arms. My elbows needed support under them and my hands ached.

From 9:20 to 2:30, I managed to sleep decently in my recliner. After that, it was a struggle again and I eventually got up at 4:15. I still had the stabbing sensation in each arm, but most of the other arm discomfort was gone and there was no sign of a headache.

I headed out early for a morning bike ride and made sure to stick to the smoothest roads I could find and avoided anything challenging. The ride ended up being comfortable and not too taxing. When I finished, I took my dog Peanut for his morning walk and twenty minutes later, I wanted to curl up and die. However, today is my morning that I also do the lawns so after some fuel in my body, I began mowing. When I finished, I did the trimming, weeded a couple beds, and then blew the walkways clean.

There are no words I know to describe how I felt other than the work left me feeling exhausted. Besides the pain I felt, my arms felt like concrete and my muscles had next to nothing in terms of the strength necessary to push the mower or hold onto the trimmer.

When my pain level becomes like this and I have tasks to do, it is all I can do not to panic. I try and remain calm, but inside I keep telling myself to rush through the work and get it done. The problem is, if I rush, I make mistakes and then I have to go back and correct them. As it was, I did the bare minimum work, hoping next week I will feel pain free after tomorrow’s epidurals.

In three days, Charlene and I will pick up her two grandnephews to come stay with us for the weekend. I do not know what I am going to do if I do not receive instant relief from tomorrow’s injections. With my pain comes an intolerance for noise and disruptions which is normal behavior for two teens. I need to be at my best to make their stay an enjoyable one. If I do not get any relief right away from the epidurals, I will have to rely on my pain meds and they do not help a person focus and stay sharp when in the presence of others.

One positive is my mental frame of mind is much better despite my high pain level. A few months ago, I would have gone to a much darker place, but because my TMS therapy worked so well, I am able to remain focused on the positives. I tell myself this pain is temporary and will soon be gone. I remind myself I have other options besides my narcotic and muscle relaxant to combat this and those options will not only help knock out the inflammation in my body, they will give me a break from the harder stuff so when I do need to return to them, they will be more effective. As it is now, I have built up a tolerance to my dosage of pain medication. I need a break from it to allow myself to use it in another month or so when a smaller dosage will work better than my current larger dose.

Managing my pain means managing my options for dealing with it. It requires keeping on top of it at all times and to know when it is time to change things up. Those changes can influence what I take for pain relief, but it can also include changes with what I ask of my body. It requires humbling myself and asking others for help as well as telling myself I need to take a break and rest for a day or two.

While my pain has been around for a long time, it’s only been more recent that it has forced me to rethink how I live my life. Dietary changes, workout changes, and changing how I think when hit by pain are all new for me. I have yet to master them, but I am determined to do so. Otherwise, my pain will consume me to the point it is all I have in life. As it is, it is a part of my life, one that is unwanted, but one that is not going anywhere. It is up to me to make it as difficult as possible for it to show up. To make sure that it doesn’t will require me to be more determined to beat it than it is to beat me.