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I take the maximum narcotic dosage for a non-terminal patient. Narcotics reduce pain and elevate mood, but when they wear off, the pain comes roaring back, and I go into physical and emotional withdrawal. Such is my daily life.
For twenty years, I’ve been in pain from various sources. The first—and worst—was bilateral shoulder pain caused by rotator cuff tears and osteoarthritis (it was like having ice picks driven deep into my joints). I slept in a recliner because I couldn’t lie in bed, even for a minute; I walked with my arms crossed because holding them at my sides was unbearable. I had three shoulder surgeries that required a long recovery, yet I still can’t lift heavy weights, stretch my arms above my head, or pull objects toward me.
I also have bilateral knee pain that two surgeries didn’t eliminate, and I’m suffering from a failed hernia surgery (I haven’t seen a doctor for fear of Covid). My worst ongoing problem is soft tissue pain in my middle and upper back, pain that started in 2014, when I fell from a ladder and crushed two vertebra. This pain extends across a broad area, hurts every waking hour, and makes sleep difficult even with a Unisom, 15 mgs of Ambien, and 2,700 mgs of Gabapentin.
Due to pain and accompanying stress, my hands shake; my balance is poor; my body is tense and achy; I unknowingly hold my breath and then gasp for air; and I can only stand in one spot if I have something to lean on. Pain has adversely affected my strength, energy, alertness, memory, patience, optimism, self-confidence, reliability, intelligence, concentration, and response to stress. I am so consumed by my problems that I have little attention for the problems of others. For years, I believed I would learn to cope, but the opposite has occurred. When I heard a war veteran say: “Soldiers aren’t strengthened but weakened by subsequent battles, and live with the growing fear that they will fall apart completely, failing their friends and dishonoring themselves;” I was struck by how closely his response to battle reflects my response to pain.
Peggy, home, cats, online friends, sleeping pills, and narcotics save me from despair. In my world: To leave home for any reason is to abandon safety. Life without narcotics would leave me in torment, yet America’s War on Drugs threatens my supply. Even with all the pills I take, pain makes sleep so difficult that I get up a couple of times a night to read. Because I am constantly distracted by pain, and because worsening speech problems make it difficult for people to understand me, I am doomed to disappoint those with whom I speak. Speech problems even intrude into my relationship with Peggy, and for this and other reasons, I see myself as a terrible disappointment to her. She gives me her best only to receive my failures.
Online friends also give a lot while expecting little. For example, M___ and I share
a long history, a mutual respect, a dark sense of humor, and a life
beset by physical and psychological challenges. I
can write to her for ten minutes or three hours; I can be sad or silly; I
can write everyday for a week or not at all for three weeks; and, aside from Peggy, there’s no one I trust more. M___ was formerly social, and people were drawn to her. Unfortunately, Covid, a worsening speech impediment, and problems with memory and concentration, have forced her, too, into a life of isolation. For thirteen years, M___ and I have walked with linked arms toward a frightening future, there being nothing else we can do and nothing more we can give.
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| Harvey |
Harvey—my son, friend, lover, father, brother, angel, comedian, counselor, sphinx, playmate, and objet d’art—just joined me, and I will now speak of cats. Harvey moved here in 2019 as an abandoned kitten whose huge ruff, long fur, wild eyes, foxy face, swaggering walk, arrogant expression, and great bush of a tail, won him oodles of toys and free food for life. I had long dreamed of having a world class feline beauty (see photo), and Harvey turned my dream into a reality.
If I had to describe how cats and I relate in a single blessed word, that word would be simple. I know how to please them, and our relationship is guilt-free. I hold them in rapt adoration, and they respond by telling one another that, despite my intellectual, I am a pretty decent fellow, and that they will reward me with: poise, purrs, warmth, cuddles, athleticism, graciousness, dignity, playfulness, and friends with whom to watch nature documentaries. Like fluffy clouds in a deep blue sky, the mere existence of cats is, like the title of a Mormon Scripture, A Marvelous Work and a Wonder. Like Peggy, like my home, like my online friends, and like my pills, I wouldn’t know how to survive without cats. Fortunately, I won’t have to.
*Prior to losing its place to the flat-faced Persian, an ancient breed called the Turkish Angora reigned for 400-years as the Western World’s most popular cat. Yet, they would have disappeared from the face of the earth forever if not for an American-inspired breeding program that began in Ankara in the 1950s. Close related to the Angora is the Turkish Van (van means white), which so loves to swim that it would be cruel to deny them access to water.
18 comments:
Pain is a soul sucker isn't it? Years back I went to a Pain Management Clinic where the presenters told us that 'pain impacts on every aspect of your life'. Given that chronic pain lasting over six months was a pre-requisite to attending the course they were preaching to the converted.
I hope that your supply of medication to help you deal with it is never taken away, and I am very glad that in Peggy, your beautiful cats, and online friends you find some precious respite.
I don't take medication for pain but I do take barbituates to control my epileptic seizures. Because I have been taking them for more than 55 years I am addicted to them. As you know that doesn't mean I crave more or abuse them. My body would however revolt if I were to stop taking them. I wish your pain would be more manageable for you. Is there another medication that might work better? Other than that question I won't presume to tell you how to feel or what to do. Please accept my good wishes for you.
I hope you're given all that helps you cope with pain.
I don't think there's anyone who doesn't feel pain of some sort: acute, chronic,seasonal, etc.. I usually try homemade remedies first, such as ice, or a herbal supplement before I go further. Sometimes it helps, sometimes not.
Stay well and take care!
I have known of your battle with pain for all the years I have known you and it stuns me that we can't do better for people like you.
I haven't experienced physical pain very much in life and I have very little tolerance for it but I can see that it could break a person. I'm unsurprised that you feel a resonance with the experience of veterans: you are also a veteran of pain, disability and trauma. It's really very little different.
I had to write a few paragraphs about my thoughts on suicide and I wrote that in many cases there are answers to the issues that make people want to end their life but in some cases I would regard it as an appropriate response to unending suffering. Your suffering certainly shows no sign of abating.
Is your speech trouble a side effect of the drugs?
I cannot imagine what you are going through and how you survive. I hope you can continue to get the pain relief meds you need. Peggy and the cat are wonderful for helping keep you sane. Many kind thoughts.
While you are in a much worse state than I am, having recently being diagnosed with osteoarthritis in my spine that gives me bad pain in my neck, you have my sympathy for multiple areas where you have pain. Pain can show in your face and distract you terribly. Each month my mother has to get Federal Government approval for her dosage of pain killing codeine.
The sciatica experience in March, sent me to the ER, where, with an O2 monitor on my finger, I watched my blood O2 routinely drop to the 80's. Sure the finger thing didn't fit well. But the nurse said "You're holding your breath. People in pain do that." I realized I'd hold my breath at times close to 30 seconds. It was the pain, so I sure get that. The Xrays of my spine that came two days later showed its kind of a mess. My future may be a wheelchair. I wish I hadn't seen those results. My brother is having a knee replaced in a couple weeks. He's been in pain for years. I hope it goes well, as he is terribly excited about the prospect of NOT being in pain. I have an elderly friend who fights to keep her pain meds. She's had terrible problems after a life of bus driving. Those driver seats are painfully uncomfortable on a bus driver's back. The war on drugs should not reduce drugs for pain management, especially once a person breaches 60 and on.
I knew you had some problems, but I didn't realize they were so acute. I hope you find something that eases the pain, and the stress that goes along with it. I've had my share of arthritic pain -- knee, ankle, neck and back -- but so far (thank you to the fates, the lord, whatever!) a steady regimen of physical therapy has kept it in check. On the other issue: I hate to disappoint you, but I'm a dog person not a cat person.
Snowy, your unremitting pain is like Hell on Earth. It's upsetting to know about it. I've known for years how you've suffered from this chronic and intolerable torture. And all I can do is sympathise. I wish there were something more substantive or useful I could do. I cannot. Nor can doctors, nurses or similar experts.
Your fall from the ladder was disastrous a few years ago. Spinal damage is not only dangerous; it can be fatal. You did well to survive and cope with that accident, thank goodness.
My darling daughter, Clare, has a brain tumour (pineal gland) inoperable, and other problems, the latest being EDS - Ehlers-Danlos Syndrome, which is making her life painfully difficult this last year or more. This latest challenge to her well-being is painful and again inoperable. The sinews that keep one's joints in place have failed, mainly in her left shoulder. How she copes with her shoulder dislocating the way it sometimes does is remarkable.
But somehow she manages. Waiting for an MRI scan but she doubts the value of this, especially as a dye will have to be injected into her affected shoulder blade, most painful.
Best wishes for some comfort in your life my dear friend. Philip
I don't blog--or visit blogs--so often I used to, and I really didn't expect this many touching comments. Thank you. I'll just respond to a few for now.
"Is your speech trouble a side effect of the drugs?"
The ENT doctor simply said that my vocal cords quiver--she could physically see them doing so. I have no idea that drugs caused the problem, but since solitude means less opportunities for speech, perhaps that played a part. I suppose it's also possible that pain played a role because it throws the whole body into something of a tailspin. In fact, I marvel that I'm still alive. When I was a child, I stuttered, and I couldn't pronounce the letter L (as you know, I have a six letter name, and three of those letters are L), so I have spent my entire life feel tense around speaking, so maybe that too plays a part.
"I have been taking them for more than 55 years I am addicted to them. As you know that doesn't mean I crave more or abuse them."
I should think that what you're describing qualifies as dependence rather than addiction. I rather envy you your supply of barbiturates because if I should someday choose suicide, barbiturates would definitely be my method of choice (in fact, it's how assisted suicide is carried out here in Oregon).
"I don't think there's anyone who doesn't feel pain of some sort: acute, chronic, seasonal, etc.. I usually try homemade remedies first, such as ice, or a herbal supplement before I go further."
Ice is a wonderful painkiller--although the effect is short-lived)--so there have been periods when I used it several times a day in the form of blue ice bags that of various sizes. Among other standard and non-standard treatments I've tried are heating pads (I use them daily), Tai Chi, yoga, CBD, marijuana, Ketamine drips (Ketamine was the most frightening drug high I've ever experienced), Lidocaine drips, Glucosamine, acupuncture, cupping, chiropractic, deep tissue massage, yoga, ablation therapy, turmeric, and the injection of a lubricant called Orthovisc deep into joints. Some of these things I need to try since my age and ailments have changed, and since I didn't stay with some of them for as long as I probably should, the fact being some such things can run into a lot of money. There are a few things that, if money were no object, I would definitely try although I wouldn't hold out much hope that they would help (hypnotherapy and other varieties of acupuncture come to mind), while there are other things--like homeopathy and faith healing--that I wouldn't try even if they were free because I regard them as lacking any conceivable merit.
"I'm unsurprised that you feel a resonance with the experience of veterans..."
Most of what follows will have nothing to do with chronic pain, yet it comes to me to share because it has been on my mind since my teens...
I did everything I legally could to avoid the draft for America's ill-advised "War in Vietnam," and through luck and determination, I succeeded, yet I nonetheless believed that war (even so pointless a war as the one in Vietnam) made boys into men, and that, by not going to war, I missed out on an important part of the male experience. I gave up this view a very long time ago, and now see such beliefs as being what what society indoctrinates its young men so they will gladly embrace the desire to travel thousands miles in order kill other young men in the imagined defense of all that is holy. No, war doesn't make men, war chews them up and spits out the survivors who go on to spend the remainder of their lives deeply wounded in spirit if not in body. Pain does the same, but at least pain alone doesn't cause people to wake up in the night screaming as they relive the same nightmarish scenes endlessly, often accompanied by shame and guilt for having shamefully preserved their lives and committed atrocities. What struck me as really strange--even at the time--about Vietnam--was that the most hawkish members of American society were the veterans of Korea and WWII. At the time, this made me wonder how bad war could be if those who had been experienced it were eager to send their sons and grandsons off to do the same. I suppose the answer consists simply of an acceptance of authoritarianism. After all, it wasn't every veteran who was hawkisk but primarily the ones who belonged to veteran-based organizations, particularly America's "Veterans of Foreign Wars." I even realized at some point that there exist people who truly love war. To give a few famous examples from this country: President Theodore Roosevelt, a WWII general named George Patton, and, I strongly suspect, the writer Earnest Hemingway. I also suspect that elite military organizations (for example, America's Army Rangers and its Navy Seals) are filled with people who love war. Like those who thrive on other forms of extreme risk, war lovers are so nearly dead inside that they need a lot of stimulation before they're capable of feeling much of anything.
Pain is torturous.
Unfortunately we don’t get given any narcotics now unless we are literally dying
So I’ve had to just make do with a few glasses of something alcoholic in the evening so that I can get a few hours sleep
It isn’t ideal but it’s all I can do
I’m so sorry your in so much pain, it really is soul crushing
I am so sorry that you have to endure so much pain and wish that I could help. Does CBD help at all?
I am fortunate not to have chronic pain but I have had extended periods of acute pain such as a broken arm that could not be set that I could not imagine living with it much longer.
Your kitties are beautiful. Sadly I have cat allergies so when I visit friends with cats, much time is spent sneezing
"Unfortunately we don’t get given any narcotics now unless we are literally dying."
I hear that the same is true of sleeping pills, which, if I had to choose, I would choose over narcotics because ameliorating pain when I'm trying to sleep is more important than ameliorating pain when I'm trying to work. Fortunately, one doesn't develop so great a tolerance to Ambien that it stops working, as do the stronger pills I've taken--Restoril and Dalmane. While doctors in your country might not give you Ambien for simple insomnia, you might have better luck if you tell them that you need it because you're in pain, especially if medical tests can establish a reason for your pain (aside from having two crushed vertebra BELOW the area of the pain, I have no tests that conclusively prove that crushed vertebra are causing my back to hurt, or even THAT my back is hurting).
As for telling a doctor that you drink in order to sleep, I wouldn't, because the doctor might then worry that you will combine liquor and Ambien, or else s/he might hone in on the possibility that you're alcoholic. I recognize that it must sound dreadful for me to say such things, but long experience has taught me that anytime the subject of controlled substances (Ambien being one) comes up during a doctor's visit, things get weird, so it behooves the patient to avoid setting-off alarm bells. Sadly, this creates an unfortunate but necessary distance between oneself and one's doctor, and causes people with a legitimate need for pain relief to act like manipulative addicts in order to get that relief. The patient must also bear in mind that doctors are also victims of the present day anti-drug system, which means that they can't simply think about how to best help their patients, they must also consider how their prescribing rationale will impact their careers. In this country, doctors' offices have literally been raided during working hours. Of course, the drug cops claim (falsely, I believe) that these are extreme cases, yet such raids send the message to all doctors that if you displease the Drug Enforcement Administration, it will humiliate you, take away your means of livelihood, and otherwise do its utmost to wreck your life.
"So I’ve had to just make do with a few glasses of something alcoholic in the evening so that I can get a few hours sleep. It isn’t ideal but it’s all I can do."
Are you under the care of a pain specialist, whom could at least prescribe the non-opioid painkiller Gabapentin? Despite whatever government-imposed edicts your country's doctors are laboring under, it is surely true that some doctors might help you a great deal more than others, so I would google a few and read up on what their patients say abou them. Personally, I only drink when I'm working in order that I CAN work. For a while, I was supplementing narcotics with 190-proof (straight-up grain alcohol). I then stepped down to 80-proof rum, and from rum to beer. Short of drinking a six-pack or more, the beer isn't strong enough to do much for the pain, but I'm haunted by the thought that I'm taking so many liver and kidney destroying substances that I'm going to die years before my time if I don't show some restraint.
"Each month my mother has to get Federal Government approval for her dosage of pain killing codeine."
Andrew, I have no idea what that process entails, but it sounds like the purpose is to make things so odious that the patient gives up. I actually haven't had codeine, it being used primarily in cough syrups here. I just looked up the difference between it and the oxycodone (which is actually stronger than heroin) that I take: "Oxycodone decreases discomfort by increasing the tolerance to pain...Codeine increases tolerance to pain, decreasing discomfort, but the pain still is apparent to the patient.. With oxycodone, the pain is not "apparent to the patient," or rather if it is, I take more oxycodone.
"Does CBD help at all?"
Because I am on a "pain contract," I needed CBD that had no THC, which I found at CBDMD. After going through a bottle or two, it started bothering my throat, so I returned what was left, and they gave me a refund. As for whether it helped, I noticed no great change, but it could be that I needed more of it, or that a brand which had THC would have given me better results.
"Sadly I have cat allergies so when I visit friends with cats, much time is spent sneezing."
Would it make a difference if your friends put their cats out of the room? Peggy has a friend who can't come here at all because of the cats, and she says it would make no difference if they were in another room. I have read of people with cats who developed allergies to them--or rather to their dander--something that would be horrific for us. Peggy says she would keep them anyway, and I would certainly go to great lengths to keep them anyway, but it's hard to positively vow to sign-on for misery without knowing just how much misery one is signing on for.
"I hate to disappoint you, but I'm a dog person not a cat person."
Tom, you state some version of this sentiment every time I write about cats. If dogs and cats can be friends with one another, why should their people divide into camps? I'm wild about dogs; I had dogs for sixty of my 72-years; and I'm thrilled that you have dogs because I regard you as a caring person. According to a 2006 Gallup Poll, here is how American dog and cat "ownership" breaks down: "27% own a dog but not a cat, 12% own a cat but not a dog, 17% own both..." I thought the number of cat households looked unbelievably low, so I searched a little further and found a recent poll by the Insurance Information Institute (https://www.iii.org/fact-statistic/facts-statistics-pet-statistics), which states that 43% of American households have a cat while 63% have a dog (it didn't give the number of households that have both). The same site stated that Americans have 94-million cats compared to 90-million dogs. I consider this believable, because, cats being easier to care for, many people have more than one.
"Your fall from the ladder was disastrous a few years ago."
It was damn embarrassing too after decades of working from ladders. Still... when a friend later said, "I guess you won't be climbing ladders anymore!" I was surprised that he would imagine me so timid (I later reflected that he was speaking of himself as someone who resolutely avoids manual labor). Ten years ago, I had a very minor fender bender, yet it was scarier to me to get back in that car than it was for me to climb the ladder I fell from, and the same was true the last time i got a traffic ticket. I did resolve that I would no longer stand on the very top of a step ladder, something I had done with no problem hundreds of times. I attribute my fall to the fact that I had gotten old enough that my balance and reflexes had deteriorated. Knowing this has made it a little scary for me to bend over to clean the gutters.
"Spinal damage is not only dangerous; it can be fatal."
I cared for a lodge brother named Don Dickinson who died when he fell while working atop a one story roof. Once, when I was much younger, I felt a fully extended twenty-foot extension ladder slide beneath me, but it only moved a few inches before it stopped. You know, I just remembered another occasion when a step ladder kicked out from under me, but on that occasion, I was able to grab hold of a limb (I was pruning a tree) and lower myself to the ground.
"...in many cases there are answers to the issues that make people want to end their life but in some cases I would regard it as an appropriate response to unending suffering. Your suffering certainly shows no sign of abating."
Then it's time to do myself in, would you say? (I AM kidding you.) The longer someone lives with pain, the more unlikely are the odds that he or she will see an end to it. If it were as bad all the time as it is some of the time, I don't know how I would survive. What I would like to do in such a situation would be to go on the dark web and buy Fentany (I would buy a test kit to verify that what I paid for was what I got), which, I suppose, is the world's most effective pain reliever. I've had Fentanyl on a few occasions, and was pleased to note that it didn't leave me obviously bombed, and not acting bombed is extremely important to me. Have you heard of something called Chronic Regional Pain Disease? I have because a doctor wrongly told me I had it. It tends to follow a minor injury--I knew someone who got it following a sprained ankle--and young, previously healthy women are especially prone to it. People who get it either kill themselves or go insane, the pain being off the chart, there being no treatment, and painkillers not touching it. What horrors this world contains!
'I am a pretty decent fellow' - I had no idea, in that case I'm off, I always had you down as a reprobate. Hahahahaha.
I concur and happily reflect back your affection, apart from the latter part about cats, though I mean that generally as I do love your cats as they are as much a part of your family as Peggy is (sees Peggy looking thrilled at this premise). The internet can cause much misery and pain but it also has given us links to people on the other side of the world we would never have met, known, loved or been amused by. It's a lifeline for many and the opposite for others. I'm so glad you started stalking me all those years ago and with affection have reduced the restraining order to only another eight years *beams*.
Pain, we both know all too well. Love helps pain. <3 Xxx
"I'm so glad you started stalking me all those years ago and with affection have reduced the restraining order to only another eight years *beams*."
My, but how we forget! When I fled England to escape your obsession with me, you followed me, first to Australia, then to Singapore, and finally to Belgium, which was where I had my second emotional breakdown upon running out of money. It was during my time in Belgium that Interpol and Amnesty International stepped in to help. After I had a gender reassignment and a racial reassignment, you no longer considered me sexy and you lost interest in me. I was then able to marry and lead a normal existence. I finally realized that I should have stayed with you, so I left my husband (who, as a result, committed suicide), and had my race and gender reassigned a second time. Sadly, by then you had fallen in love with someone else, and I've spent the last five years chasing the two of you all over the world. Come to me, my love--can't you see that God wants us to be together?
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