Pain check-in


Pain has two parts, the pain itself, and the strength, or the lack thereof, of the sufferer. In my case, I think that much of what I experience comes from weakness because I never imagine that I handle chronic pain as well as the average sufferer. On the other hand, I think I handle acute pain better based upon what doctors have told me and upon what I’ve observed of others. I’ll give an example. When I was in the eighth grade, I broke my lower left arm on the playground when I forearmed another boy while the two of us were running full speed in opposite directions. The break was such that my lower forearm was bent backwards as if I were trying to tough my upper arm with the back of my hand. As I walked to the principal’s office through a playground of open-mouthed kids, I smiled. Part of what makes acute pain easier to bear is that it’s often connected to something that people can see, so they shower you with sympathy and praise you for your bravery.

I never feel that I’m any good at handling chronic pain compared to some of you who are reading this, but then how would I know? Anyway, I don’t think I am, and I get down on myself for being a wimp. Another problem with chronic pain is that people run out of sympathy. An acute injury brings out the best in friends and even strangers, but chronic pain produces feelings of awkward helplessness accompanied by looks of disappointment when the same boring questions are met with the same unhappy answers. As time passes, the sufferer feels unsupported if not unwanted.

Chronic pain also makes it difficult for me to think well of myself because I’m constantly reminded of all the things I can no longer do. For instance, I would like to join a gym in winter when I can’t work outdoors, but there are so few exercises that I can tolerate, it’s not worth it. I look at my future, and I see pain, pain, and more pain until I die in sixteen years or so. It’s the kind of outlook that leads people to kill themselves, and if I weren’t married, I might consider it.

Just thinking about killing myself makes me lose more self-respect because I regard even a fleeting temptation in that direction as a sign of weakness when so many people who are worse-off than I are able to carry on. I was sinking so low in spring that I figured it was time to experiment with what I see as my last resort—an expensive drug called Cymbalta. Fortunately, it’s helping (along with Neurontin, oxycodone, and Ambien), although I have so little confidence in anything at this point that I don’t trust it to keep helping. But for now, anyway, the knife-like pains in both shoulders, the severely bruised feeling in my hips, the sharp pains in my hip joints, the dull ache in my lower back, and the horrible tightness in my upper back are improved. 

Cymbalta also seems to be slowly helping my mood, at least to the extent that I don’t lie awake most of the night thinking about death (I now lie awake most of the night reciting poetry—I know a lot of poems). Unfortunately, the pain in my knees is worse, and I’m both exhausted and sore beyond sore in much of my body from my fence work, but these are minor problems compared to the ones that the Cymbalta has helped.

The worst part about living with chronic pain came some years ago when I was new to it, and found it so frightening that I would lie awake worrying that it would get so bad that I would be forced to kill myself. One day, while lying in the bowels of an MRI machine, it really did get that bad. Although I had taken Dilaudid, I lay there counting the seconds, feeling complete sympathy for soldiers who divulge information under torture, and wondering what atrocities I would commit if only I could escape the pain. I came close to that level on other occasions, and since one of my diagnoses was Complex Regional Pain Disease—a common outcome of which is insanity and/or suicide—and a second diagnosis, syringomyelia, wasn’t much better, it didn’t seem too big a stretch to imagine that the pain would become unbearable. Fortunately, both diagnoses turned out to be wrong.

I must confess that there were a few times when I became so desperate that I prayed, but instead of helping, my prayers only made me lose more self-respect because I felt weak for praying to a god in which I didn’t even believe—talk about pathetic. Yet, as pain increases and becomes a constant in one’s life, desperation also increases. That’s why, when I was in that MRI machine, I had those fantasies of committing atrocities. I thought, well, would I kill someone to escape this pain? Would I drown kittens? Would I transfer the pain to someone I love? And even if I wouldn’t do these things now, might I not do them ten minutes from now, but if not in ten minutes, then surely in an hour, that is if I wasn’t not a gibbering, drooling psychotic by then? When I hurt so much that I would be willing to abandon my moral values to stop the pain, it takes me even lower in self-respect.

There is no part of my life that pain hasn’t touched. Like rape or cancer, it has spread through my entire being as, one by one, it invaded every place within me that I had considered inviolable and in which I thought I could find safety. Like a war veteran, I’ve been set apart forever from normal people. Pain has even lowered my IQ, and since I had prided myself on the fact that, no matter what else I lost in life, I would still have my intelligence, to see even that slipping away has been a hard thing indeed. I forget what people tell me, and I forget what I tell them. When I’m doing one of my handyman projects, I make mistake after mistake. I don’t even want anyone to help me because I don’t want them to see how stupid I am. I can still make sense enough when I write, but I can’t measure a board with any confidence. Even if I check my measurement repeatedly, I can’t trust that I calculated correctly or even that I’m able to read the ruler correctly, and this too lowers my self-respect. Peggy witnesses my loss of intelligence more than anyone, and I find it humiliating for my wife to see how low I’ve sunk. I ask myself what am I still good for, and I can’t come up with as much as I think I should.

Perhaps, you can now understand how difficult it is for me to know what to say when someone asks how I’m doing or when they offer facile advice. Because they can’t see the source of my pain—as they could when I crushed my thumb last winter—they can’t begin to understand how bad it is, and there’s nothing I can say to make them understand even if my appearance didn’t belie my words. If you’re not writhing on the floor, or at least grimacing, people don’t take you seriously, so there’s really no point in talking about how you feel. Yet, the last thing that I want is to look like I’m in pain because the appearance of pain would suggest that I’m out of control, and being out of control would be the ultimate humiliation.

I’ve spent hours picturing myself washing down oxycodone with vodka while holding a .38-special in case I panicked when the drug paralyzed my breathing. Even though I never intended to do such a thing in the foreseeable future, I knew the day might come when I would have no reasonable option, and I wanted to harden myself against that day. Besides, I couldn’t stop the fantasies. Fortunately, Cymbalta has done just that. If only they will stay gone, but, as I said, I no longer trust anything to really help because I’ve seen so many things start out promising only to fizzle. Such experiences have taught me that it’s foolish to be optimistic. Likewise, it’s foolish to try to have a social life. It’s foolish to talk about how I feel (I regard writing about it as another matter). It’s foolish to ask people to help me. Most things involving other people have come to seem foolish because no one wants to be around someone from whom so much has been taken.

I have my work. I have my blog friends. I have my writing. I have good drugs, good books, a good cat, movies in the evening, a growing collection of old TV shows, good food and good coffee, such work as I can still do, trips to the mountains, houseplants, yard plants, an occasional dinner with people I’ve known for a long time, and, of course, I have Peggy. These things keep me going, and they’re enough. I would like more, but they’re enough.

I chose Bosch's painting of Christ to illustrate this post because it represents my sense that other people are around me but not with me, and, given my desperation, this makes them seem stupid, boorish, and oblivious, as disagreeable to me as I am to them. Of course, it's also true that I try to hide most of what I'm feeling because: there's really nothing anyone can do; I find it impossible to communicate my feelings verbally, and people wouldn't want to hear them if I could because I would be saying the same things over and over; and I don't want others to imagine that I'm a weakling and that they're my superiors because, unless they've survived pain better than I have, they're most certainly not. 

22 comments:

Helen said...

These things keep me going, and they’re enough. I would like more, but they’re enough. ~~ (what I need to hear you say.)

Elephant's Child said...

Yes.
And I frequently get infuriated when people tell me that I look like I am doing really well on days when every movement is an effort and staying still hurts like hell too.
I can remember someone asking whether I had got a second opinion because I didn't look as if I had MS. And that stupidity is all too common.
Pain is a soul sucking beast, and I am very glad that you have (and recognise) the supports that you do. And that they are usually enough.
Hugs.

Stephen Hayes said...

I was as excited to see one of my favorite Bosch paintings as I am disturbed over your continued suffering. I hope and pray (Yes, for you I'll resort to prayer) that a solution can be found to ease your discomfort. Beyond that it's difficult to know what to say but I do think about you frequently. Take care.

Snowbrush said...

"(what I need to hear you say.)"

When I read that, I couldn't tell if you meant to put a comma after the word "hear" or not because the sentence could easily meant two different things. Since since you didn't put one, I assume you didn't mean to because you are not a person who has trouble communicate clearly.

"I frequently get infuriated when people tell me that I look like I am doing really well on days when every movement is an effort and staying still hurts like hell too."

Small wonder that you're disagreeable, irascible, abrasive, cantankerous, abusive, and an all around pain-in-the-ass to every person and dog who crosses your path. Fortunately, these are the attributes that I LOVE in a woman, and so I love YOU. You've been a faithful friend for years now, and I thank you. The thought of someone who has to struggle so hard against despair staffing a suicide hotline impresses me deeply because, after all, who would be better able to understand such people than you, yet who would find it harder than you to do the work?

"I was as excited to see one of my favorite Bosch paintings..."

My motto is to never look at a Bosch painting while using marijuana because he's only too good at portraying people at their worst, and I can easily become overwhelmed with despair when I dwell upon how "fallen" my species is.

Helen said...

Well, thank you for the vote of confidence ... To clarify, I felt you ended a difficult post on a positive note and I love that about you.

angela said...

Chronic pain is the worst. Your right there is no escaping it. It's there day and night all day every day. And it travels with you. It eats away at all parts of your life isolating you and turning you into a grumpy hermit. I know this oh so well. The only thing keeping me here is that I'm still needed. But the day I'm not I'm getting off this planet. The horrible truth is as the years go on. It will get worse and that's just plain sad

CreekHiker / HollysFolly said...

I know your pain is rough... But the things you do have sound might nice to me!

I hope the cymbalta keeps on working...

Elephant's Child said...

Thank you. Lots. And love returned. I am not a pain in the nether regions to cats though. Just people. Mind you, if someone rings the hot line and expects to hear that everything is going to be fine and will smell of roses and gets me, they are likely to be disappointed.

kylie said...

I nearly always feel that people surround me but aren't with me, and I'm not even in pain! I think that feeling is a symptom of the human condition or maybe it's part and parcel of better than average intelligence :)
I'm so sorry it's all so tough, i think of you often and wish there were answers
xo

All Consuming said...

For myself, the antidepressants and seeing a psychologist ( not a psychiatrist, they tend to be pure drug pedlars from what I have witnessed), are the only things that took me from the brink of both what I believed to be madness and away from thoughts of suicide. The psychologist taught me ways or changing how I think about it all, about the future (which at that time was a black one), and how I think the world perceived me. It made a massive, massive difference because it means I can turn my brain off, switch channels in effect from the Möbius strip of fear, anxiety, and how I viewed myself too. The disappointment of what might have been possible had I not been struck down with all this. My basic upshot here is that your brain is causing you a great deal of the angst, and now that you have a drug that is finally helping a little, if you possibly can afford it, I think you'd benefit enormously from seeing someone like that. They could help lift that weight I see on your shoulders, battering you into the ground repeatedly. And, unlike God, they are real. I think of you very often Snow X

Charles Gramlich said...

I tend to handle acute pain fairly well also, but chronic pain wears me down.

Linda said...

Most of what you wrote struck a chord with me, exactly how I feel about other people and their response. I have never been close to suicide, but suicide is an option that is there for me.

I have just started feeling like my cognitive abilities are being affected and my ineptness with physical tasks shows. However, I would attribute your problems in those two areas to the drugs you are taking. When I have succumbed to a doctor's drug, I quit because it affects my mind, and physical actions. Neurontin got to me after one pill. The doctor told me never to take it again. I ran into door facings, tripped, slurred my speech, and could not handle a cup. I think part of your problem is drugs not your true physical self.

I would rather lie screaming in pain than have my mind compromised. But, that much pain does affect the mind. I hurt so I could die. And, no one wants to hear that a person is still not better!

I laugh, talk charmingly and with much knowledge about things we are discussing or ask the right questions. Then, people are horrified when I try to walk. I try to hurt silently, but sometimes grunts escape, much to my embarrassment.

Clerks get annoyed because reaching above my shoulders hurts me. I do reach high but can only do it so many times a day. Leaning while riding the electric cart hurts and causes much pain later. Why do they think I am riding? Of course, the extent of my injuries is pretty well beyond the understanding of most people even when I tell them repeatedly why something hurts, why I cannot do a simple task.

It is discouraging.

Think about what the drugs are doing to your IQ. Not remembering has nothing to do with your IQ. Drugs are the cause of your lack of remembering. Well, drugs and the effect of pain on your brain. Really, it is not you. As we age, we do tend to forget. When I am tired, I do forget things. Don't be so hard on yourself.

My exbf come to help me. I tell him something and he swears I do not. It is either him or me. Mostly, it is him and he refuses to believe he ever forgets! At least you are aware of your perceived shortcomings. He has diabetes, so there lies the problem!

At least you like I, can admit to forgetting. I think your public acknowledgement of these affects of aging, pain, and meds can be a good thing. As long as you write coherent sentences with complex thoughts, I think your mind and IQ are intact. But, I understand the horror you feel that your intellect is being compromised.

When people ask me how I am NOW, I reply that nothing has changed and things are worse. They look so disappointed and uninterested at some point, not that I repeat the litany of my injuries and pain.

At an ultrasound yesterday, I reeled off why I might not move as well as she wanted me to. She said, "Okay." She was not impatient at all when I needed a bit of help or took too long.

But, when it came time to sit up, she grabbed my arm just above my wrist and started to pull on me. I shrieked to stop after she did not stop when I told her to the first time. I have to be the one holding and pulling, not have someone just drag me around like I am a rag doll. She was hurting my wrist, shoulder, and back. She was a medical professional!

Even a baby when being picked up, grasps the person doing the picking up.

I understand your symptoms of your cognitive abilities, but I think you need to realize why instead of thinking your brain is failing you all on its own.

Snowbrush said...

"Mind you, if someone rings the hot line and expects to hear that everything is going to be fine and will smell of roses and gets me, they are likely to be disappointed."

Yeah, I can imagine some imaginary supervisor coming to you and saying that, of the calls you've handled, 100% killed themselves, most of them while they were still on the phone and within five minutes of you taking the call.

"I nearly always feel that people surround me but aren't with me, and I'm not even in pain! I think that feeling is a symptom of the human condition or maybe it's part and parcel of better than average intelligence :)"

Good point. I can relate to what you say and to your theories as to why it might be true. I would only say that some experiences push the feeling to new heights for the individuals who go through them. " The horrible truth is as the years go on. It will get worse and that's just plain sad."

I'm afraid you're right, but I don't know that hope ever dies completely except when I'm at my lowest. The rest of the time, I find myself hoping that new cures will be developed, or that I will at least learn to cope better.

"I think you'd benefit enormously from seeing someone like that."

You expressed yourself wonderfully. I remember you talking before about the benefits you're received from anti-depressants, but I didn't recall that you saw a shrink. You had a one good, and I'm delighted for you. For my part, with one exception, I've never had anything but bad ones, so much so that I've come to hate the profession as being one that is more likely to do me harm than good. I've also had romantic relationships with a couple of shrinks, and Walt himself used to be one. All this together has caused me to conclude that the profession as a whole is largely composed of people whom are only too fallible, whereas what's needed is guides with plenteous experience and exemplary wisdom. Oddly, there was a time, before I knew so many of them, that I held shrinks on a pedestal because I imagined them to be what I now think that they should be but aren't. Of course, I saw atheists similarly. As a boy in the midst of rural ignorance, I saw anything exotic as being highly desirable.

"They could help lift that weight I see on your shoulders, battering you into the ground repeatedly."

Again, I appreciate your thoughtfulness and how eloquently you express yourself. I love you.

"Neurontin got to me after one pill. The doctor told me never to take it again. I ran into door facings, tripped, slurred my speech, and could not handle a cup."

You write as if these were bad things. I, personally, have no problem with walking into walls as I take it to mean that I'm going to get a good night's sleep.

"no one wants to hear that a person is still not better!"

Well put.

"Think about what the drugs are doing to your IQ."

Based upon my reading and my experiences, I seriously doubt that the drugs are doing anything to my IQ. It's my liver and kidneys that I worry about.

PhilipH said...

Never-ending pain scares most, probably all, of us.

Even worse, when the pain goes away and the relief is so sublime and then it just returns. That's when thoughts of doing away with it all comes on so strong.

I wouldn't condemn anybody for taking such a final step. I hope you never do so but would never say you were a coward.

Joe Pereira said...

I can't begin to imagine what it must be like to be in your position, Snow, I feel for you. I can understand the occasional drift into thoughts of suicide. Being the squeamish coward I am, I'd probably resort to illegal narcotics. Or even grow my own opium poppies.

Furry Bottoms said...

define non-existential?

Furry Bottoms said...

I just came back from Elephant Child's post today, to reread this post of yours.

There are so many illnesses out there that aren't obvious to other people. People say you look fine, you act fine, and I want to say well you don't know how I am FEELING!

Unfortunately the world is run largely by appearance. Which is very sad.

Somebody mentioned, think about what drugs do to your IQ. I can personally vouch that... illegal drugs DO destroy your IQ. But you're not talking about illegal drugs here, are you? You're talking about good medication. That is what I am hearing.

Just live life as only you can. That's the most anyone can ask of you.

Snowbrush said...

".. illegal drugs DO destroy your IQ. But you're not talking about illegal drugs here, are you? You're talking about good medication.

Well, you might want to read my recent post. Furry Bottoms. When you read that post, you'll realize the short-term power of marijuana if you don't already, but where's the proof that it's anywhere near as dangerous as most prescription drugs? The only such "proof" I have seen was by people who were biased due to their religion or to their desire to make money by either by busting people or by helping them give up pot, and I didn't find what the say convincing partly because they're not believable given my own experiences and the experiences of people I've known. I'm not saying marijuana is harmless or that nobody gets addicted (although very few do), but I have none of your faith in such drugs as the government pronounces acceptable, not when their own warning labels name fifty or more horrible things that they can do to you that will either kill you or make you wish you were dead. So, anyway, I take four legal drugs, don't do illegal drugs much at all, and the only one I do then is pot (I rarely take a single drink either), but neither do I feel good about taking prescription drugs. If you want to ponder a dangerous drug, think narcotics if only because it's Percocet and Vicodin that are the real gateway drugs, because when people can't get a new prescription, and can't afford to buy prescription narcotics from a dealer, they move up to heroin.

Snowbrush said...

"define non-existential?"

I can't remember the context, so I don't know what you're asking exactly. To give you a definition off the top of my head, I would that existentialism is that philosophy primarily promulgated and defined by Sartre, so non-existentialsm would simply refer to some philosophy that was based upon something other than an immediate and direct concern about what it means to exist. BTW, Sartre and Camus were an atheists, but Kierkegaard and others were theologians.

Does that help?

Furry Bottoms said...

Okay. I was wondering if you meant like after death, there was nothingness. Just nothing. No soul to feel or know or do. Or if you meant living presently in your life but in a very nonexistent way. But you cannot live a nonexistent life because life is existence.

lotta joy said...

Being in constant pain, I hate being asked "How are you feeling?" by an acquaintance. If I lie and say "fine", the next thing out of their mouth will be an invitation to go out for supper or just GO OUT.

If I tell the truth, then I see their eyes glaze over with a "hear it comes again", even though I'm not about to detail my health issues for them.

I have always been of the opinion that HOPE is the most devastating emotion for the chronically ill. I used to hope one thing or another was going to help, and when it didn't, I found the effort of readjusting my thinking back to hopelessness was the harshest part.

If I can accept the fact that pain for me is constant then why can't everyone else accept it? The south is NOT gonna rise again, and the act of "asking" implies expectations for a different answer.

ACCEPT IT. I had to.

Snowbrush said...

"I was wondering if you meant like after death, there was nothingness...Or if you meant living presently in your life but in a very nonexistent way. But you cannot live a nonexistent life because life is existence."

I must have meant number one, because I agree with you about number two.

"I have always been of the opinion that HOPE is the most devastating emotion for the chronically ill....If I can accept the fact that pain for me is constant then why can't everyone else accept it?"

It does hurt to get shot down time after time after time. Last night, the pain in my hips and left shoulder returned, and it was my anticipation of this that kept me from being as hopeful as I might have been about Cymbalta offering long-term relief. I had a physical therapist who seriously chided me for not being optimistic that his therapy was going to help, this despite the fact that I had seen maybe ten PTs by then. I thought him unusually stupid when I heard this. But even though I have little hope for any specific treatment, I never lose hope completely. For example, if my hips keeping hurting this much, I can always get hip replacements, and as much as I hate the thought, I'm still glad I have the option. So, unlike you, I guess, I never completely lose all hope, although my hope in specific treatments is pessimistic given how many I've seen fail, and how upset I used to become when they did fail. I'm maybe more upset about my pain returning than I would have been had the Cymbalta not appeared to help for a month or so, and if I had any other options for drug-therapies because I really don't want to go through more joint surgeries.