Graphic done by Tim Forkes
Chapter 6: Maybe I Will Sleep When I Die Tuesday: May 5, 2020
People who say sleep is overrated and that there is plenty of time for it when they die have no idea how wrong they are when chronic pain, fatigue, and depression take over your life. They often claim their Type A personality does not require as much sleep and that they have too much to accomplish to waste their time snoozing while they load up on energy drinks to power through their days.
I’ve never claimed to be a Type A person. I prefer life at a slower pace and enjoy focusing on one thing rather than having to constantly multitask my way through life. Maybe as a result, this leaves me with too much down time that allows my mind to drift or become more attuned to my pain. What I do know is I am worn out.
Today, I woke at 4 a.m. after seven hours of sleep. I did not feel the least bit refreshed because throughout the night, I woke up every time I moved. As soon as I tried to roll over onto either side, I was jolted by a lightning bolt of sharp pain, usually from my shoulder, that quickly reminded me to remain still. Having to lie still while flat on my back and wake feeling rested is an impossible task. Our bodies need to change position and normally do so without us waking during rest.
As soon as I sat up, my head began throbbing. I felt like I had a hangover, however, I knew the pain was not from alcohol. Along with the back of my head pulsating, I noticed the loud ringing in my ears. Today, there is just the ringing noise. Many days, I get what feels like pulses or surges that feel like quick electrical impulses. Other times, it results in loud popping and banging sounds.
My morning routine is pretty predictable. I stand up and walk to the bathroom and as I do, I quickly assess any other aches or pains I have, usually the result of the previous day’s run or yard work. Today, I am either doing better than usual or my head hurts so much it is all I notice. I will know better in an hour or so.
I head out to the kitchen and quickly chow down on a banana and a handful of cashews. I mix up my favorite mug with two scoops of instant coffee (I need an extra scoop because of my headache) and some protein powder (I just can’t drink coffee by itself) before filling it up with hot water from our Keurig. While it fills, I grab another handful of cashews before I head to my office with coffee in hand.
As an anxious person, I prefer to be a man of routine which tends to make me boring and predictable in the eyes of the more adventurous. I like knowing what is around the corner and not knowing how I will feel when I get up each day makes my life more challenging. Worse, not knowing if what I feel is going to subside or worsen means it is hard for me to plan my day. Too often, I am left to just wing it because I never know what to expect from the pain front.
My depression sets in when I have a specific responsibility like work and I know my pain level is going to be high. It means I have to either suck it up and trudge through my day feeling miserable, often requiring me to fake a smile so others don’t ask what’s wrong, or I have to time when I head to the medicine cabinet to take some Vicodin and Robaxin hoping it knocks out my pain and no one notices how stupid the drugs make me.
I need a break from this pain for many reasons, not the least of which has to do with medication. A couple months back, my Vicodin dose was doubled from 5 mg. twice a day to ten. However, since then, I find I have to take double that amount to get any type of relief. It concerns me because it is such an addictive drug. Plus, the doubling of the Tylenol level in the drug has its own side effects. When I get a break from pain flare ups, it helps me not rely on addictive drugs while also providing my body a much needed break.
In two days, I am set to resume acupuncture treatment and it is my hope it will help knock out my level of discomfort and allow me to stop relying on Vicodin. The next day, I will see my chiropractor for the first time in over two months. Both have had to close up shop since we have been observing social distancing and lockdown policies. With restrictions beginning to be lifted, my hope is I will be able to get back to a more comfortable level of life and maybe even begin sleeping for longer and more comfortable stretches.
I also need to contact my therapist. I have not seen her since all this began as well and I feel I need to get back to talk therapy and eventually the TMS treatment (Transcranial Magnetic Stimulation) I had to cancel when the COVID-19 outbreak brought our world to a screeching halt.
Most of the nation wants a return to normalcy. I want to find out what normalcy is because unlike most of the country that has had their lives turned upside down the last two months, I feel pain, depression and fatigue have prevented me from ever knowing what normal is like. Am I fixable or am I a real life Humpty Dumpty, broken to the point where I can never be repaired? Is the pursuit of normalcy worth it or am I destined to feel broken on multiple levels? Is feeling like this normal given what I have experienced or am I so screwed up that normal was never a part of who I am?
I now have been up for less than two hours and despite the strong mug of coffee, I feel like sleeping. I might as well give it another go because today does not show a whole lot of promise. Maybe a nap will help restore my outlook for the day. Then again, maybe sleep is overrated and I just need to challenge myself to take on more things in life so I haven’t time to pause and be aware of just how horrible I feel.
Thursday: May 7, 2020
Today, I saw my acupuncturist. Actually, she is more than that. She is a doctor of Eastern Medicine. It has been more than two months since my last session with her. I told her I felt like I was starting all over again. However, after the treatment, I felt immediate improvement. My headache was gone, but I still felt ringing in my ears. Best of all, my neck, shoulders, and arms were much improved. A few hours have passed since the session and I am not experiencing any rebound effect either so I am hopeful I will again begin seeing longer lasting improvement.
While we met, she also mentioned she wants me to meet with someone who is a master herbalist. She believes I need to attack my pain, depression, and fatigue from multiple angles and that there are herbal treatments that can go a long way to helping me. She would also like me to take a 23Me test so she can run some numbers as well to better understand any dietary changes and other lifestyle changes I may need to consider.
These treatments along with continuing to see a therapist for talk therapy and eventually getting TMS, she feels, will go a long way toward improving my life. I am banking on it, literally. I can’t help but start getting nervous when I think of the cost factor of some of this stuff. Last year, I ran up huge medical expenses due to the two orthopedic surgeries I had as well as the oral surgery and on-going physical therapy. Add in the cost to see her and my chiropractor and even though I have excellent health insurance, I racked up huge medical bills.
I already know I need another surgery to correct my trigger finger. My acupuncture sessions with her are not cheap and I am guessing any herb therapy I try won’t be either. I have to remind myself the goal is to see if I can get to the point where I no longer need an antidepressant and narcotics. If so, it will be worth it in the long run. However, if all this fails, I have thrown away a lot of money and will be at the same point with my life.
This all gets compounded by the fact I am not up to working either. How do I commit to any employer if I have no idea how I am going to feel when I wake up, or on an hour to hour basis? It is difficult for me to plan much of anything so I end up not planning anything. Consistency is all I want. If my life includes chronic pain, I can plan for it. However, if I can lick it, I will be able to move forward in another direction. This means I have to commit for the time being to some alternative treatments to see whether or not they can lead to a positive difference in my life. There’s nothing to lose, other than money.
Monday: May 18, 2020
I have had three acupuncture treatments and have been surprised at how well they have helped. However, today, things came crashing to a halt. The biggest mistake I made is I let some stuff build up rather than use my pain medication. In particular, my elbows and left shoulder.
After going to bed around 9 pm last night, I was awake early in agony with nerve pain in both arms. I could not keep my arms still because there was just no getting into a comfortable position. My shoulder I had repaired last summer has also flared up and I am pretty sure it is nerve related since the burning pain runs from the back side. It remains impinged and at night the pain is worse. As a result, I got up at 10:30 and checked out Facebook for an hour before heading to the recliner. I managed to get about four and a half hours of sleep, but none of it was deep or restful.
To add to my pain, a weather front came in last night and it began to rain lightly this morning. Still, I went out to my gym this morning and decided to run at an easy pace for an hour. When my arms are acting up, I find running on my treadmill helps relax me. However, today, by the time I finished my run and stretched, my body was pretty much a wreck. Joints, muscles, and tendons from head to toe were stiff. My arms were on fire and every joint in my body felt locked up. I also felt nauseated.
An hour after I ran, I was hitting the medicine cabinet and hoping to get some relief. Fortunately, my daughter Hannah Face Timed me with the little girl she nanny’s for. We had a nice chat and the call went a long way to cheer up my spirits. When it ended, I felt well enough to make a quick trip to the Post Office and a store. It’s been five hours since I took the medication and I am still getting relief.
While I was out, a package arrived with the herbal powders I am to begin mixing with hot water and drink twice a day. I am going full in with this and hoping I see some big improvement. I also received a balm to rub on aching body parts. I will give it a try on my sore and tight trigger finger.
I have no idea if any of this eastern medicine will work for me. What I do know is it can’t be any worse than how things are now. The sense of panic and desperation that sets in when I get slammed as bad as today scares the hell out of me. I worry about becoming a statistic and having Charlene come home some day and find me overdosed because of my misery. People who suffer from pain, depression, and fatigue need hope. We need to believe things will get better. Without it, we question the life we live. .
Today, despite some of the worst misery I have felt in a long time, I have hope.
Tomorrow, I will meet again with the psychiatrist who will oversee my TMS therapy. Soon, I will begin it and hopefully will be among the 70% who receive positive results. I do not want to think about what I will do if I don’t. Most likely, I will consider Ketamine therapy and worry about the cost that comes with it. Like anything else a person pursues in life, there is no guarantee. I know I can end up spending a fortune on a solution that never comes and be left with less money in the bank. However, for now, it is a gamble I feel I need to take.
Sunday: May 24, 2020
I have received enough acupuncture of late to begin seeing an improvement in how I feel. There have been fewer days ruined by pain and fatigue. I am not relying as much on pain medication to help me get through the day. I have been going to greater lengths to make sure I do not over do things and get worn down. In short, I feel better and am thinking more about a future where I can be more productive.
However, I have to be cautious and not see how far I can push things. I am having to trust a process being provided by someone else which requires me to place my trust in others. This in itself is not an easy thing for me to do because I have always relied on trusting myself so as to minimize being hurt or let down by others. This is all new to me and I often feel as though I am going against the grain. However, I remind myself of a quote I used on students often who repeated poor behaviors, “If I always do what I have always done, I will always get what I have always gotten.”
I am holding myself back now with the hopes I have more of myself in the near future. It’s all a gamble, but I have to admit it beats repeating old behaviors. As a result, this past week has seen a few more changes. After a good talk with my acupuncturist, I was reminded my body is in a battle with itself. Along with reprogramming my brain, I am having to allow it time to heal and adjust to new and healthier habits.
Along with a pain log to monitor how I feel day to day or even hour to hour, I have begun keeping a food log. I can no longer just consume whatever I want in as much quantity as I desire without expecting some sort of negative fallout. I am not doing anything cold turkey, but I am working on lowering my consumption of sugar. Gone are my two morning bananas and in their place will be yams and sweet potatoes. It helps that I like them so replacing one of my favorite fruits is not a big deal. Less jam on my peanut butter and jelly sandwiches, no snacking mid day on something sweet, and less after dinner sweets, although I still like a handful of dark chocolate covered almonds.
I will bring my log to my next acupuncture appointment for review and make further changes as necessary. My stomach has not had any issue handling the dietary powders I have been mixing with hot water twice a day. Time will tell if I have less bloating, more energy, and maybe a few less pounds. It’s only been a week, but at least it has gotten off to a positive start.
Another area I am working on is listening to my body when it comes to physical activity. I will always workout as long as I am physically able to, but I am making sure not to over do it in this area as well. I am no longer pushing myself through workouts. Instead, I take the cues my body gives me, think about what is in my best long term interest, and adjust accordingly.
Yesterday, after some strength work, I set out to run on the treadmill for forty minutes. During the run, I noticed I felt really good and thought of either upping the pace to a more challenging level or continuing for an hour. Instead, I reminded myself of the larger picture and held to the steady pace I was enjoying for the predetermined time I set. Could I have gone harder or longer? Yes. Did I need to go harder or longer? No. Was there anything worth gaining if I did? Not really. Today’s plan calls for a sixty minute run and that is what I will do, unless my body tells me to back off. Instead of pushing myself to see how much I can accomplish, I now try to focus on what is in my best long term interest.
In two days, I begin TMS therapy and once again I have to trust the process. This is not a quick fix. I am committing eight weeks to this treatment with the hope that by the time it ends, between it and my other changes, I will be feeling much better. If so, I can begin thinking about the idea of returning to some sort of part time work. If not, I will have to readjust and see where I might be able to make changes that will impact me in a positive way.
Sleep has been a bit off of late, primarily because my wife and I have hit a stretch where our dogs have been more like little kids with lots of late night needs. Last night was a rough night as several were up a few times. My guess is they managed to eat some unripe fruit off of a low hanging tree of ours and their stomachs paid the price. Knowing this and knowing I have little in the way of things I have to do today, it will be vital for me to get in a nap.
All of this is new to me. It feels like I am learning all over how to live, how to care for myself, and how to set myself up for success down the road. At this time in life, this is not where I thought I would be. However, the big lesson through all of this is life does not always go according to the plans we made. I never planned on a life where depression would wage a war with me. I did not expect to have to deal with the levels of pain and fatigue I have been dealing with the last few years. My plan was to enjoy a working retirement.
Perhaps I would have, had I listened to my body better in the past. There is no way of knowing. What I do know is I must incorporate changes into my lifestyle if I want to enjoy the working retirement I planned for. Otherwise, I can continue expecting the same old pain, fatigue, and depression I have refused to fully acknowledge. It’s there. It’s real. But it can also be temporary as long as I am willing to trust the expertise of others.
Wednesday: May 27, 2020
It is two o’clock in the morning and I have been up for an hour. I am waiting for my second dose of pain medication to kick in and rid myself of the discomfort in my arms. The elbow pain is the worst although my biceps and triceps are giving them a run for their money.
I began my TMS therapy yesterday. They are quick and painless. After I was fitted for a special cap to wear and marked for locations to receive stimulation, I spent about three minutes receiving magnetic pulses that will hopefully reawaken areas in my brain. If it works, I should begin noticing an improvement in my mood in a couple of weeks. Perhaps, if my depression improves, my pain and fatigue will as well. Time will tell.
In the past two days, I have needed to remind myself I am not ready to return to work yet which has resulted in not applying for a couple of part time jobs I was interested in. I tell myself there will be other jobs available in a few months should I feel better. However, with our state opening up more after being shut down by the coronavirus, it would be nice to find a job when so many places are looking to fill positions.
I am also feeling a bit overwhelmed. Trying to keep track and treating my depression, pain, and fatigue has in itself begun feeling like a full time job. There never seems to be a break from it. I have to think about everything I eat or drink. No more than two servings of caffeine are allowed while I receive TMS treatment. One serving of alcohol is another restriction. Both are minor, but both also are a reminder I just can’t decide to have whatever I want. I am also struggling to not eat all the things my acupuncturist wants me to eliminate. Retraining my brain, new eating habits, restricting myself from overdoing it in the gym or on projects and one appointment after another wears on me.
The more I think about all that is involved, the more I become anxious which just tenses me up. As I become more anxious, it triggers my depression, pain and fatigue. I feel like a damn hamster that can’t get off the wheel it is stuck inside. Oddly enough, it makes me want to get on my treadmill and tune out the world and just run, much like I did as a kid.
For now, I will give sleep another try. My arm discomfort has eased a bit and as it approaches three in the morning, I will try to squeeze in a couple of more hours of much needed sleep. This is not how I envisioned my life being at this age. Is this as good as it is going to get or will I receive a new lease and be freed to live, enjoy, and thrive?
Friday: May 29, 2020
Now that May is coming to a close, we have been hit with our annual June gloom weather. I am finding I am waking up earlier and with more arm discomfort which means holding back on how much I exert myself. I really do not like this because I have always loved this type of weather.
Two years ago, I worked myself up to doing a two hour run thanks in part to the thick marine layer keeping the sun off me. Before the end of my first marriage, I used June to attack the steep roads that climbed up the mountain east of Hemet on my bike or go on 80 to 100 mile rides. By the end of the month, my conditioning would be at a peak because the cool weather and time off for summer made it all possible.
This morning, I am debating whether or not to trim an overgrown bush in the back yard after a 40 minute jog. It all makes me realize how much this nerve issue has progressed in the last two years and I worry about where I might be in another two. So much of it seems out of my control. All I can do is sit back powerless and let it happen. My mind is not wired like this. I am more of a fighter but now my fight is with myself and changing my approach to how I live and what I do. I tell myself it is no different than what others must do when faced with a medical issue.
My mom had to do the same when she was just 42 and was diagnosed with colon cancer. She had to live with a colostomy bag at such a young age which I am sure had to make her feel as if she was no longer complete or as desirable as a woman. However, she did not allow it to stop her from living a full life and I try to draw inspiration from her, but it is not always easy.
I have seen cancer survivors at the YMCA I used to work at struggle to get back the lives they had before a disease tried taking it from them. Accident victims, soldiers returning from war, and even children go through struggles that make mine pale in comparison. I need to find a way to dig deeper and find a greater internal strength so as not to let this thing get the best of me. I know this, and yet doing it is not as simple as it sounds.
Jim is a life long resident of California and retired school teacher with 30 years in public education. Jim earned his BA in History from CSU Chico in 1981 and his MA in Education from Azusa Pacific University in 1994. He is also the author of Teaching The Teacher: Lessons Learned From Teaching. Jim considers himself an equal opportunity pain in the ass to any political party, group, or individual who looks to profit off of hypocrisy. When he is not pointing out the conflicting words and actions of our leaders, the NFL commissioner, or humans in general, he can be found riding his bike for hours on end while pondering his next article. Jim recently moved to Camarillo, CA after being convinced to join the witness protection program.