Chronic: The Pain We Don’t See, Chapter 17

Top illustration by Tim Forkes

Chapter 17: Back to Work November 11, 2020

Tomorrow I begin a new job. It has been almost a year since I decided I needed to step back from my three part time jobs to deal with my pain, fatigue, and increasing depression. It has been a struggle to defeat each of these invisible illnesses and I am at varying points with each. My depression has responded really well to the TMS while I have had my share of ups and downs in both the pain and fatigue departments.

I also have an MRI scheduled first thing tomorrow morning to see better what is going on with my right hand. Whatever it is, I have decided for now I am going to continue to live with it rather than deal with another surgery and the three to four month recovery I have been told to expect.

On top of this, I received some of my blood test results and they show another drop in my white blood cell count. My body is fighting something. Each time it drops, the only symptom I have is major fatigue. Thanks to COVID, plenty of places screen people by taking their temperature. Mine is never high so I know I do not have a fever. I also do not have any of the other usual things that might tell me I have an infection like a persistent cough, clogged sinuses, or anything inflamed. Previous tests for autoimmune problems have come back negative, but from what I am told, such disorders are difficult to diagnose.

I have decided it is time to get out of the house and do more than go to doctor appointments. Unfortunately, finding work has been challenging since I began looking more seriously about two months ago. Because of COVID, not a lot of places are hiring. Those that are hiring want people who are younger than me. Many part time jobs dried up when COVID hit and most of what is out there are in areas I am not qualified for.

Fortunately, I answered a job posting for a maintenance position at a local Motel 6 and was hired for the job. It is just two days a week so it is not going to wear me out and it will allow me to do a variety of tasks so each day should be different.

This morning, I took off for a two hour bike ride and for the first time in a while I did not feel depleted while riding. I was tempted to take advantage of this and do a more challenging ride with plenty of climbs, but I told myself not to get greedy and just enjoy the ride. I am trying to live in the moment more and not stress about when I get a flare up of pain or floored by fatigue. Being happy with what I have is more important than worrying over what I do not have. The days I have high energy and low pain are appreciated because I know they are temporary. So too are the days when I feel like crap. Nothing is forever.

Where I used to be very regimented with my days, now I try and go with the flow. Since childhood, I have been tied to a schedule. Routines have been vital toward helping a guy easily distracted to remain focused and on task. However, when I was younger, I knew what to expect from my body. It did not let me down and I was always able to extract from it all I could no matter what was on my day’s schedule. Now that I no longer know what to expect from it, I am having to teach myself to be patient and flexible, two things that do not come naturally to an anxious person.

However, as the saying reminds us, we are never too old to change. I may be an old dog, but I can still learn a few new tricks that will help make my life easier and more enjoyable on a day to day basis.

Tuesday: November 17, 2020

I am beat, totally worn out. Fortunately, it is a good kind of worn out and nothing caused by my usual pain and fatigue struggles. Since last Thursday, I have worked six consecutive days at my new job. The work is constant and physical which leaves me feeling exhausted when I get home. Even though the job was for two days a week, between shadowing the other maintenance guy and then working the last two days on my own, I have racked up far more work hours than I agreed to.

The weather has cooperated by being unseasonably warm and dry. I have also managed to avoid any neck related flare ups. Because of this, my fatigue has ebbed. Time will tell if I continue to hold up when we get more winter-like weather. Until that time, I am enjoying the extra hours and feel appreciated by the people I work with.

My boss is also new to the Motel 6 and wants to get the place looking nicer and running better, so she is good with me coming in more often. She is very vocal with her appreciation for my work which makes it easier for me to sacrifice free time to be of service.

By the end of the work day today, I was pretty much empty and glad to know I have tomorrow off. But like I said at the beginning of today’s entry, it is a good kind of exhaustion. Being new to the place, I have been asked to do a lot of inspecting. After working at a place for a while, it is easy to get used to not seeing things that others might pick up on. If those people are customers and what they are seeing looks off, it can result in a poor review.

There are big issues like some of the balcony railing and support posts that need addressing to little ones like the exterior of the air conditioning units needing cleaning. Like most any other job site, there simply are not enough people to do all the work that needs doing. Add in the new requirements for COVID safety and it takes more time to get work done.

I am not allowed inside any room that is occupied with a guest so I am not able to address some of the minor issues guests have. They either have to live with them or be moved into another room so the issue can be addressed.

The cleaning crew has it the hardest. An eight hour work day simply is not enough to get to all the rooms that need cleaning. We have also had to have our staff cut back and moved to other motels in the area that have staff out due to COVID.

I know I cannot maintain the work pace I have kept, but as long as my body is cooperating, I will try to work as much as possible.

It was a long year off from work, but now that I am back, it feels good.

Saturday: November 21, 2020

While my overall energy has improved somewhat, it still lags and it reminds me whenever I work out. In my gym, I am limited to about 30 minutes of core and resistance work, a far cry from the much longer sessions of not that long ago. On good days, when my energy is up, I might extend it another ten minutes, but I have to be careful. If I do too much, I pay a steep price, especially in my shoulders and elbows.

On days I ride, I just lack the energy to tackle the type of rides I am used to doing. Climbing is a chore whereas it was my passion. A two hour ride can leave me wasted for the remainder of the day. It was not that long ago a four-hour ride left me feeling exhilarated and energized. Now, the thought of a four-hour ride never enters my mind because I know it is not possible.

Mentally, it is more difficult to get myself to work out because too often I am only reminded of how much my strength and endurance have declined. I know with each passing day the odds of either one fully returning dim.

I did not imagine myself feeling this way at my current age. It is troubling because I still do not have a clear answer for why this is happening. I understand the pain and discomfort that comes when my neck flares up and sets off the burning and tingling down my arms. When you hit something head first as hard as I did in 2007, you are just happy to be alive and not confined to a wheelchair.

Still, this does not explain my other pain, the fatigue, and my bouts with a low white blood cell count. Why have I lost the strength in my legs for climbs on a bike? Why does a two hour ride at a comfortable pace on flat roads take so much out of me? Why haven’t I begun to see a steady growth of improvement? There must be something more and I just wish doctors could provide me with a clear answer.

Yesterday, I saw the hand specialist who went over my MRI results. It turns out they looked pretty good which just makes what is going on in my right hand that much more a mystery. Perhaps there is a connection between it and my neck issues. All I know is when I use my spin bike at home I lose the feeling from the tip of my finger up to my elbow. My grip strength is noticeably less than my other hand, especially when my thumb acts up. I tell myself this is what you get when you break your thumb as a teen and later break the hand and the wrist on separate occasions in college.

The process of growing old does not agree with me. I miss not being able to sleep soundly in my bed. I hate waking in the middle of the night and struggling to get out of bed because the pain in both arms is too much for me to rely on them to help push me up from the mattress. I can’t stand having to walk the house while I wait for life to re-enter my arms. I never planned to sleep on the couch or in my recliner the second half of night, but all too often this is the case. Am I destined to be uncomfortable for the remainder of my life or will I ever get to enjoy pain free stretches that last longer than the ones where pain and fatigue dominate me?

Fortunately, tomorrow I work. I also work Monday. In fact, I can work as much as my body will allow because my boss needs me. When I do work, I will be too busy to let my mind be dominated by my discomfort until I get home and realize I have worked too much. Like with everything else, I need to find a nice balance, knowing too much of anything will just leave me spent and in pain.

It is almost two in the afternoon and I could easily go to bed and sleep soundly until my body wakes me with pain. Instead, I will remain awake, dependent on a little more caffeine, until I can enjoy dinner and an evening with my wife. My eyes might not see 7:30 tonight, but for now, I will do what I need to in order to keep them open.

Tuesday: November 24, 2020

Today, I received a testosterone shot after meeting with a Physician Assistant and discussing my recent blood work. My hope is it will help improve my energy. I am dragging today. This morning was filled with another ride with tired legs. There should be more life in them than they have had the last month and a half. In fact, overall, there should be more life in all of me. I will get more blood work next week and the week after to see how I respond to the shot, but since my testosterone level is a bit low, I can expect to get shots on a regular basis as long as my blood work comes back clean.

As for my new job, I find as long as I remain busy, I am able to hold up through the day. By day’s end, I am tired. My mid back aches and as soon as I get in my car to drive home I feel my energy leave. However, my pain level has not flared up since I began this job. As long as it remains in check, I can handle 20 to 30 hours of work a week.

The number of people being diagnosed with Covid is on the rise again. Our area is seeing the numbers go up. At work, we just got an employee back after she was out with it. I was informed by the PA today that since my vitamin D levels are very low along with a low white blood cell count, I am more at risk for Covid and other illnesses. I need to remain diligent and wear my mask as much as possible when out in public. However, it is impossible to wear one and see what I am working on at work. Since most of what I do is inside empty motel rooms, I pull it down so my glasses do not fog up. Otherwise, I am pretty good about wearing it.

Thanksgiving is in two days and Charlene and I plan to spend it with just each other. I cannot understand why so many people will put themselves, and others, at risk by ignoring the social distancing guidelines and safety recommendations. We know enough about Covid to know no one wants to be on the receiving end of a bad case of it. Some things are not worth the risk.

At the same time, I know there are people who will question why I continue to push myself physically given the challenges I face. 2007 was not the only close call I have had on my bike. I have been hit from behind by a pickup truck hauling a 5th wheel and walked away with just some road rash. I had a pit bull jump out of nowhere at me while riding down a steep hill only to crash and get more road rash. I also hit a small boulder that fell down a hillside and sat in the middle of the road on a blind curve causing me to be tossed over an embankment.

As I have mentioned before, I have had a dozen orthopedic surgeries from injuries or ailments, most of which came from playing sports. When you throw in the assorted list of ailments from working out over the years, a lot of folks might wonder why in the world I continue to want to remain as active as I do. Why do I insist on doing my own yard work or take a job as physically demanding as the one I have now?

Life is filled with risks. However, it is also filled with consequences that we must be able to accept with every risk we take. I know myself well enough to know if I stopped riding my bike, running, or doing gym work and replaced all of it with something safer like walking, I would be miserable. Some people express themselves or release their stress through less physical activities. I have never been that sort of person.

I receive a great deal of satisfaction if at the end of the day I challenged myself physically. Doing so takes a great deal of mental discipline that has helped me to be able to focus on things in other aspects of my life. Being able to push through a challenging workout has allowed me to maintain the discipline to earn excellent grades in college, teach some of the most challenging students you can imagine, and push through the most difficult times in my life. Suffering comes in many forms. It is a good idea to have a system in place that trains you to deal with life when it throws something ugly at you. Like everyone else, I get knocked down from time to time, but training has taught me to always get back up.

Thursday: November 26, 2020

It is Thanksgiving and I have much to be thankful for. However, the last twenty-four hours have been a physical challenge. Last night was an exercise in pain tolerance. I felt fine when I went to bed and fell asleep with ease, but as the night wore on, the slightest movement sent stabbing pain through my shoulders, biceps, and fingers. My elbows and wrists felt locked up and tender to touch and lying still was impossible. I knew I was making painful groans that eventually would ruin Charlene’s sleep, so I struggled to get out of bed and headed out to the front room.

Since it was past midnight and I had plans for a bike ride this morning, I opted not to take anything for my pain. I want a clear head when I ride my bike so I have a policy of not taking anything for at least eight hours before a ride.

I tried to get comfortable and sleep in the recliner, but all I could think about was my discomfort. After nodding off only to be awakened by a stabbing sensation several times, I got up for good at 4:30. My fingers on both hands throbbed while numbness set in my wrists. The tenderness in my elbows and the stabbing that came with every arm movement did not let up until around 7am. Determined to burn off some Thanksgiving calories before I consumed any, I hopped on my bike and set off for a ride.

My plan was to hit the climbs near my home but since my night was so rough I decided to go for a more relaxing ride on the flat roads around town. Unfortunately, I was not expecting to get to the furthest point from home only to turn around just in time to be hit head on by a wind storm. A relaxing ride turned into a nightmare requiring me to pedal as hard as I could while gripping my handlebars as tight as possible just to keep from being blown off the road. I was working as hard as I would on any long climb I have done in the Sierras only to continually be blasted by winds over 30 mph. They were relentless.

Needless to say, the ride did not do my pain any good. Now, here I am waiting for my pain medication to kick in but after an hour, there is no sign of any relief.

Still, I am thankful for much. It was not that long ago where I was feeling mentally and physically beaten and telling myself I had to make this year one in which I found either answers to my chronic illnesses or at least ways of handling them better. Clearly, pain and fatigue are still issues I face, but mentally I feel so much stronger. This makes a huge difference. Despite my discomfort which today is enough to want to go to the ER and get a shot of Toradol, I have been able to enjoy the time I have with my wife. We have laughed, dined, and appreciated having each other in life and I am not consumed with a darkness of doubt about how much of this pain I can take. I know I am loved and appreciated by someone who is a partner in life.

I feel blessed to have the health I have and to be able to enjoy being as active as I am. My new job has been wonderful. Despite it being physically challenging at times, it has allowed me to learn new skills, be productive, and to know I make a positive difference. My children are all well and my oldest is pregnant and expecting my first grandchild. Despite a pandemic, all are healthy and doing well and that is more important to me than how I am doing.

Financially, I am on more than solid ground and have the luxury of being able to purchase most anything I want and yet, I want very little (A new bike would be nice). I see a future for this nation that finally looks up again after the strain we have been under from President Trump. President-elect Biden and his V.P. Kamala Harris seem more than qualified to begin the process of correcting the ills created by someone who never should have been elected in the first place.

The next few months will be challenging for many Americans. The pandemic is surging, poverty is increasing, and frustration is at a high point after a year most of us wish we could forget about. However, as long as there is a light at the end of the tunnel, each of us is capable of withstanding the most difficult times. Each of us can be a source of that light or we can be part of the darkness. I am thankful for all the little lights that have kept me going during my most challenging times.

The best way I know how to thank those who took away enough of the darkness I have at times felt consumed by is to be a light for others. People who suffer from chronic pain, fatigue, or depression tend to just blend in with a crowd. They work to mask their struggles from the people they are closest to. I know because I have been that person more than I care to admit. I am thankful for still being a light to people I have no idea are suffering.