Chronic: The Pain We Don’t See, Chapter 15

Top illustration by Tim Forkes

Chapter 15: The Challenge of Moving On Saturday: October 10, 2020

On Thursday, I received three vaccinations. I went to my local CVS to get my flu shot and walked out with what they called their triple crown; flu, pneumonia, and shingles vaccinations. Maybe it was the cumulative effects of all three, or maybe it was not having taken a day off in the gym in over a month, but yesterday, I was wiped out. My Friday morning ride was a descent into increased quad pain and decreased energy. When I got home, it was just after 8:30 and I was pretty much done for the day. I spent most of the day just laying around and resting with the hope of feeling human.

Last night, I interviewed with an owner of a small local fitness facility. He is looking to increase his membership now that there are fewer COVID restrictions in place and he needs another trainer. Most of his clients are in the 40 to 65 age range which fits in nicely with the ages I trained at the YMCA. He is also looking for someone who is local. We chatted via phone for twenty minutes and he said he would let me know in the next few days what direction he takes with who to hire. Despite how tired and sore I felt, I was excited to land an interview.

This morning, I received an email invitation to interview Monday at a well-known local senior community. They need someone who can monitor their pool area and who has experience working with seniors. My experience at our local senior center comes in handy.

My job searching is beginning to pay off, but I need to make sure I do not make the same mistake I made last year when three part time job offers came in within days of one another. I said yes to all three and ended up exhausted trying to balance the different schedules. When my chronic pain and fatigue set in, it became impossible to do either one so I stepped away from each. It has been almost eleven months since doing this and I am now finally feeling up to working a part time job. I just need to make sure whatever the job is adds to my life.

When your purpose for seeking a job is not based on financial needs, it’s so much easier to be straight with a prospective employer. When money is the reason for searching for work, you are at the mercy of a boss who will determine your hours. I have the luxury of knowing if the hours interfere with my desire to work out in the morning or will run late into the evening, I can thank the person and move onto looking for another job.

I do not ask about the pay primarily because whatever I earn is just icing on my monthly income from my pension. The three jobs I said yes to last year each paid very different rates. The charter school I worked at two afternoons a week paid me almost $40.00 an hour. I earned a little over half that in my small group fitness classes at the Y while my job at the senior center paid $12.50 an hour. As long as I enjoyed what I was doing, the pay was not a factor. I don’t believe in working harder for a higher paying job than a lower paying one. Every job comes with requirements and I just do them.

I already know which of the two jobs appeal the most to me. Unless I learn something in Monday’s interview I do not already know, the job at the senior community appeals more to me. The pay is less, but the hours are more to my liking and it is a stable business that is not going to fold up. There are just too many variables with the fitness position. I have worked hard this year to train myself to be better about managing myself. I know I could probably do both jobs, but at the end of the day, will doing so be better for me as a whole? A few extra bucks won’t do me any good if a second job leaves me with greater stress, pain or fatigue.

This I know: if I had not spent this year focusing on getting better control of my overall health, I would have begun thinking about how to do both jobs. It would be repeating my mistake from last year and eventually I would end up worn down again. Going forward, I know if I am offered either job and say yes to one, I will still have the time to continue doing the things I need to in order to remain ahead in my battle with depression, pain, and fatigue. If I am not offered either job, then nothing changes and I continue down my path of improved health. Either way, I end up feeling good about the direction I am headed.

Nothing is certain so I will continue to scour job postings. Until I land something, I know not to put all my eggs in one basket. It has been the same with how I have taken on my health this year. I have continued to explore my options and as I have, I feel good about which ones I have committed to and which ones I have decided do not work for me.

The challenge that now lies ahead is making sure I don’t get lazy and slip back into my old habits that exacerbates my chronic pain, fatigue and depression. However, it is a challenge I am glad to now face.

Wednesday: October 14, 2020

Two interviews have come and gone and no word back from either employer. Normally, I would feel bad about losing out on any job, but in these cases, I don’t. Neither job ended up sounding like they were anything other than ways to fill up time. Neither one made me look forward to what the jobs entailed and both involved less than desirable hours. My search will continue.

I will remain selfish when it comes to any job I say yes to. I am not willing to give up my preferred morning hours for working out and riding and I am not interested in anything that has me working into the evening hours. At the same time, some extra money and time that has me feeling productive outside the home would be nice. I have to be willing to give a little.

At the same time, I can’t help but wonder if my working days are behind me. I am 62 years old and I am not at an age where employers are wanting to invest in someone like me. When that someone is as picky as I am, it may take a while to find the right part time job.

There is also doubt inside me. I wonder if taking on a part time job is a mistake. Perhaps I am better off waiting through the winter to see just how much my pain and fatigue remain away. Right now, I feel pretty good. I have been sleeping well and I am noticing improvement in my strength in the gym. These are positive signs. However, I am also aware we are currently enjoying an Indian summer with warm evenings and daytime temperatures in the low 90’s. My body always feels better in these conditions. How well will it feel when we get some rain? What happens when the marine layer returns and the humidity increases? Mostly, how long will I enjoy relief from last month’s epidural procedure?

For now, I am cautiously optimistic which is far better than where I was back in January. I am needing fewer pain meds and my depression has ebbed its way to extinction. Both result in major fatigue so now my energy level is higher.

Still, there is a certain lack of confidence that comes from having been off work for almost eleven months. There is a learning curve with any new job and having been mentally disengaged with the outside world for as long as I have, I worry about whether or not I still have talents to offer employers. I know I can always fall back on work in the area of education, but when I retired in 2014, it was so I could work in other areas of interest far from the public school system.

For now, I will remain patient. It has taken a great deal of patience to get to where I am health-wise so there is no reason I cannot remain so while I look for the right part time job. I am not interested in settling and prefer to enjoy all that I have now rather than work a job that means nothing to me just so I can say I have one. In this regard, I am very fortunate. I have known many people who were miserable at my age because they could not afford to retire. They hated work and they hated the prospect of having to work more years than they ever intended. If having too much time on my hands is my biggest problem, I am lucky. It sure beats not having enough time to do all the things you have to do and being miserable about not having enough to do the things you want most.

Friday: October 16, 2020

When your life has been put on hold, moving forward can be challenging once you are clear to do so. I have been off work for eleven months and have a huge head start on living in isolation than the rest of the nation left stuck at home because of COVID-19. By the time our country began shutting down in March, I had more than three months of isolated homelife.

While many will have jobs to return to once they have the green light, even they will be challenged to deal with life in the “normal” world after being home so long. Each week that passes by, I feel the working world passes me a little more. We will be a leaner nation in terms of the workforce. Dead weight, or dinosaurs who failed to adapt to a changing world, will find it difficult to find decent work.

When the market crashed in 2008, we saw men and women with master’s degrees and twenty years of middle management suddenly left to run fast food restaurants. Companies became leaner and remained so even after the recovery took off. COVID will change the way we work, where we work from, and who gets to work.

More automation will be the norm because robots do not get COVID and do not need healthcare. People will rely more on a gig economy as they decide to have more services delivered to their doorstep. Food, medicine, personal trainers, and products delivered to your home means fewer reasons to leave home and catch an illness or be stuck in traffic.

The problem is, as technology improves, it will eventually take over the gig economy. When drones replace people and deliver our goods to our doorstep, where do the people who do these jobs now turn to for work? We are but a generation or two away from becoming a nation that will not need a work ethic because of the scarcity of work that will be available. What do we do then with our lives when we have nothing but free time on our hands and no reason to want to work?

There is a part of me that wonders if my opportunity to work is over. Unless I want to step backwards and return to education in some form, there are fewer jobs available for a man my age who wants to keep busy and productive. Physically, I am no longer up for the type of hard labor I used to do to earn money for college. Painting houses, landscaping yards, and home repair projects are things I have to remind myself that trigger my neck related pain. At the same time, I am the first to admit I have not kept up with technology. I type and I scroll on my laptop and that’s about it. My smart phone is used for phone calls and text messaging.

Now is a time in which someone like me who is used to working directly with people is placing their health at risk if they do so. COVID-19 has shut down the types of places that cater more to someone like me. I do not need or want full time employment. I do not need a company health plan. I just need 20 hours a week doing something that allows me to bring a little joy to someone else. Instead, we are too busy creating new apps to do this for us.

I know I am not out of the woods yet with my chronic conditions. The last few days, despite plenty of quality sleep, I have struggled with fatigue. I wake each morning feeling like I was used as a punching bag. My muscles are sore and ache, my joints stiff, and the back of my head throbs. However, after a couple of hours, I feel good and am ready to do more than just workout. I feel ready to work somewhere part time.

However, by the time the evening comes along, I am exhausted and feel as if I did hard physical labor all day. I feel as if something is lingering inside me and waiting to explode. Whether it results in waves of pain or greater fatigue remains to be seen. I just know it is there. Still, I want to move forward. I want to work. I want to feel as if I matter to more than just my wife and five little dogs.

It is an uneasy feeling. However, I know I am not alone for there is an entire nation that must be feeling some sense of unease the longer this pandemic stretches out. I am lucky. I do not have to work. I can play all day if I choose. I can kick back and do nothing if I want. I can take without having to give back. There is just one problem. This is not me. I am not ready to be kicked to the sidelines of life. I am just fortunate enough to where I can be picky about what I do.

Tuesday: October 20, 2020

Perhaps finding part time work is not in my best interest. Yesterday, I woke up with an aching feeling all over. A quick look outside and I noticed a very thick marine layer returned. The air was damp and misty and the thickness of the fog made for very low visibility. I stuck with my plan and went for a two hour bike ride, making sure to stick to the flat roads. I actually felt pretty good while riding, but an hour after I finished, I ached all over. By 10:30 in the morning, it was not letting up so I took the first of two doses of pain medication. My pain was dulled, but never fully left.

This morning was no different than yesterday weather-wise. I did my gym workout and then tackled the yard work. By the time I was finished, I was spent. More medication and little relief tells me I am in for a battle with my pain. If tomorrow is no different, I will switch to my nasal Toradol and hope it knocks out my inflammation.

I feel nauseous and just want to curl up and sleep until the pain passes. However, I know there is no telling how long it will linger. This discomfort is likely to be weather influenced and this type of weather is common between October and April. In just two days, I have gone from feeling great and seeing improvement made in my strength to feeling like I am being tortured. Every little fiber in my arms feels as if it is being torn and all my joints are stiff and hurt.

All of this makes me rethink my desire to work part time. Two days ago, I felt more than ready to work again. I have been antsy to find something productive to do a few hours a day that brings in a little extra money. Now, all I can think about is what will it take to make this pain disappear. It is disheartening to think it may be in my best interest to give up on the idea of working outside the home again. There is nothing to be gained putting myself through what I went through last year before I stopped working. If I am not able to stay ahead of these flare ups then working will only make them worse.

On top of this flare up, it is apparent physical therapy is not helping my trigger finger. In fact, it is aggravating it more than helping it. Last night, it was locked up on me again even though it has only been two weeks since receiving a cortisone injection. I see the surgeon in two weeks and already know he will be referring me to a hand specialist. I am going to have to decide whether a third surgery is worth it or am I better off just living with it. Clearly, I have an issue with scar tissue and I do not see how a third surgery is going to decrease what was caused by surgery to begin with.

Eight months ago, this would have left me feeling down in the dumps. My depression was getting worse after months of pain and fatigue. However, TMS therapy has done wonders for me and while I am not happy to be dealing with a flare up of pain, mentally, I am in a much better place and feel capable of getting through it. If nothing else works out for me in trying to knock out my pain and fatigue, I know the TMS will have made this year worthwhile because it has given back to me a positive outlook. The right mindset is vital when confronting any challenge. It can make the intolerable tolerable.

This pain absolutely sucks. Still, it does not control me or define who I am. It is just a part of me. I am whole in many other ways and knowing this is important because it keeps me from sinking into a depressive state.

Today is a setback, but I am not defeated in any way. I am still hopeful because I know I have made great improvements this year. I am not ready to throw up my hands and live out my remaining days in an opioid fog like so many chronic pain sufferers do. I just need to go with the flow of what life throws at me rather than fight like crazy to prevent what is inevitable. I may not be able to prevent today’s pain, but I am able to decide how I perceive it and respond to it in a way I was not able to a year ago. Knowing this gives me peace of mind which allows me to be mindful of how fortunate I am.

Friday: October 23, 2020

There are days where the combination of pain and fatigue are so much, all I can think about is finding relief. If it will make my pain disappear, it must be good. At least this is what becomes of my thought process. It is the type of thinking that leads many people down a rabbit hole of drug addiction or overdosing.

When a doctor prescribes a patient an opioid, they know they are playing Russian roulette with another life. They are entrusting the patient to not abuse the medication. In recent years, doctors have gone to greater lengths to limit what they prescribe, how much of a dose they prescribe, and how long they prescribe it for. Patients are cut off from pain medications the moment a doctor suspects the drug is being abused.

I have been told several times by the pain clinic they do not worry about me. While my medication dose has been increased, I have never asked for it to be. It was only increased after my doctor listened to me describe my pain and then checking my chart and noticing I was on a very low dose.

My tendency has been to wait too long before taking my pain meds. I have tried to see if a flare up would pass on its own before resorting to medication only to find out the pain worsens. I now know it is better to get ahead of the pain with the hope a flare up is short lived thanks to the medication. Once my pain is gone, I have no problem stopping my medication.

This week, I have been hit hard with a flare up. I began taking my medication on Monday and after three days of it, the pain persisted. I was back to being miserable. As a result, yesterday, I took two doses of nasal Toradol spray hoping it would knock out my inflammation.

Nasal Toradol is not any fun to take. It sounds simple. You spray one squirt up a nostril every six to eight hours and let it do its job against inflammation. However, one squirt is tortuous. What follows is several minutes of stinging in your nasal passage. I mean it when I say it feels like bee stings. There is no getting around it. A person has to be pretty miserable to decide to take the stuff and yesterday I was that person.

When every movement is an exercise of pain and discomfort and your body aches all over, all you can think about or hope for is relief. When an eight hour dose of an opioid takes four hours to kick in and gives you less than two hours of relief, you either want a stronger dose, a stronger drug, or you decide to add a little alcohol and hope it magnifies the drug’s effect. This leads you down the rabbit hole I mentioned earlier and into a dangerous world where you develop a greater desire for that wonderful euphoria where pain is replaced by blissful relaxation. Eventually, it becomes impossible to attain the high you seek and as you take more medication and chase it with more alcohol, sooner or later you take too much and pay a severe price.

I have no interest in becoming a statistic. I am also not ready to give up the life I am able to enjoy when pain is not a factor. Since my pain meds were failing to have much effect on knocking out my pain, I decided to torture myself with the Toradol spray rather than take more Vicodin. My first dose was taken at six in the morning with a second one at noon. In the evening, I took some pain meds and by 7:00pm, I was done. I was worn out from nearly four days of constant pain.

When I woke up this morning, the first thing I noticed was I no longer felt as if I was run over by a bus. There was no more soreness. My aching was gone and my joints no longer felt stiff. I felt about as normal as I could hope for. After cooling down from a two hour bike ride, I still felt great. At this point, I won’t need anything for pain today. I can think straight and am able to focus on things besides my own relief.

If you do not suffer from a chronic condition, you take for granted this normalcy. However, if you suffer from an invisible chronic condition, your mind takes you to dark places and you easily question yourself. You become filled with shame or embarrassment over your conditions and are afraid to open up to others about them. You try to hide them from others, just as an addict works to hide their addiction.

Today is a good day. I feel right in my mind and my body which allows my spirit to feel great. I do not take this for granted because I know it is just a matter of time before my next bout with one of my unseen enemies. While it may land a few hard blows when it picks another fight with me, I also know I can weather the initial storm, regroup, and fight back in a way that will allow me to emerge victorious. As long as I believe this, the rabbit hole will have to wait for someone else.