The UPS and DOWNS of chronic pain

I just came from the doctor, and he and I agreed that things are going splendidly following my shoulder replacement twelve days ago. This could mean that I’m one surgery away from being relatively pain free. Why, then, do I feel sadder than I’ve felt in a long time. To try to understand, I wrote “The UPS and DOWNS of chronic pain.”

THE UP: People will give you a lot of sympathy. THE DOWN: Sympathy has the shelf-life of bananas.

THE UP: You find out who your friends are. THE DOWN: You discover that you don’t have many.

THE UP: You will find friends among other people who suffer. THE DOWN: You wonder if you will still be friends if one or both of you stops suffering.

THE UP: You’re excused from making a lot of the difficult decisions about life that normal people make. THE DOWN: You don’t get the rewards that come from those decisions.

THE UP: You get to take a lot of drugs that have the power to make you feel pretty good at times. THE DOWN: If you’re in a lot of pain, you can hardly tell you took them, and in no time at all, you will have to take enough drugs to kill a normal person in order to feel even a little high.

THE UP: You always have something to talk about. THE DOWN: People don’t want to hear it.

THE UP: Pain is a school that teaches you that you’re tougher than you ever imagined. THE DOWN: The tuition is outrageous.

THE UP: You don’t have the energy or the desire to create a social face. THE DOWN: Your newfound honesty will often look like irascibility to everyone else.

THE UP: You accumulate an impressive store of medical knowledge about obscure conditions and treatments. THE DOWN: No one gives a damn.

THE UP: Against all odds, you are buoyed along by hope for a brighter tomorrow. THE DOWN: Like a sandcastle on the beach, your hope has to be rebuilt twice a day.

THE UP: No one can tell by looking at you how much pain you’re in. THE DOWN: Even when you try your best to describe it, no words are adequate.

THE UP: Your family will insist that you’re not a burden. THE DOWN: You know they’re lying.

THE UP: If nothing else stops the pain, there’s always death—if not now, then someday. THE DOWN: A life spent looking forward to death isn’t much of a life.

THE UP: Someday, you really might get past the pain, and then you will enter into a land “in which all things are made new.” THE DOWN: You will discover that this new land comes with a whole set of new problems.

In summary, even if I escape this pain, I know from within my own body how vulnerable I am, and how hard—if not impossible—it is to fix some things. How, then, can I ever live without fear, and how can I ever live without guilt that I don’t suffer when so many others do? My first real peer support was from Michelle at http://thesmallgodsshallbemyjudge.blogspot.com and Twinkle at http://elysianreveries.blogspot.com. Michelle will probably always hurt and has been near death a few times, and Twinkle is now in so much pain that she seldom writes anymore. For me to feel good when they cannot is to betray them.

Today, I heard on the news about the street fighting in Syria. Those who are wounded are afraid to go to the hospital because the police can pick them up there and murder them. They are therefore taken to private homes where they lie in agony in a city without water or electricity. Then there are the women in Africa who are shunned because of pregnancy-related incontinence; there are the abandoned pets that whimper in cages at the pound; there are the beasts of the forest that face starvation when they grow old; there are the women who are sold into sexual slavery; and there are the children who are forced to grow up in violent homes and on violent streets. So much suffering! So much suffering!

Please don’t think for a moment that I imagine myself to have risen to some exalted position from which I KNOW pain because ALL I can ever say is that I know what I have experienced, and whether by some imaginary measuring stick, it has been a little or a lot, it has been sufficient to change me, and, at this moment anyway, I just wish I could go back to the way my life used to be, because I don’t feel refined, and I don’t feel enlightened; I just feel broken, and I don’t think I will ever feel whole again.

28 comments:

Patty said...

A very thought provoking post. I suffer from chronic pain, am on strong pain meds and most likely will be for the rest of my life. I am blessed to have a doctor who writes the Rx for me ( many do not) and thanks to him least my pain is managed. And yes, I found out who my real friends are...I'm now down to one. I was always very compassionate, especially where animals are concerned. I was always sensitive to someone else's pain ( I use to work in a Burn Unit) and now I am now even more so. I am blessed. My heart aches for those who see no end to their suffering or the suffering of a loved one and being helpless to do anything for them. And for animals, who have no say in their fate.

Elisabeth said...

Oh Snow, this is such a poignant and powerful post. I have not suffered chronic pain and can only imagine, but from here I can see that there is nothing exalting in the experience of pain per se. It's the endurance of it that transforms it or is seen to transform but I can see from what you write here, it's not such a terrific thing.

May you one day soon be pain free.

The Elephant's Child said...

Oh Snow. You have to pose the hard questions don't you. And it is part of what makes you so valuable to people like me.

And yes, other people and other things are also suffering emotionally and physically, but that doesn't make your pain any less. Or mine, or anyone else's.
Perhaps the only thing (other of course than bad temper) that my pain has given me is increased empathy which is a mixed blessing.
However, I doubt that any of the other pain sufferers would begrudge you a pain free life. Not in a heart beat. And hopefully it will come.

The Depressed Reader said...

Hi Snow,
A well-written post, as always. I can't say I've endured anything like the pain you have, but the past few years have not been fun. Yes, I've learned from it. And there have been moments where I thought I have become somewhat enlightened. But like you, more than anything I just feel broken. And the harsh truth is that no one really wants to know.

That said, I sit here in Tokyo on a sunny Friday morning. The city is going about its business. Just a few hours north of here, hundreds of thousands are homeless, tens of thousands are dead. Lives have been destroyed, ruined, or at the very least, interrupted. I wish I could do something about this, but don't feel there is much I can. The suffering and devastation are impossible for me to really imagine. I'm dying to do something about it, but apart from a few small donations can't see any way I can contribute.

Kay Dennison said...

Glad you're making good progress. I learned long ago that the only one who really cares about me is me and I just muddle through it all as best I can. If I were nearby, I'd at least stop by with a meal or offer to help with errands and housework. I really would -- it's how I do things.

kj said...

you should publish this snow: send it to newsweek (my turn) and other major outlets because it touches the strength and vulnerability of every one of us creatures who breathes.

i admire you for writing this. it is honest and sensitive. i had to remind myself that i know i can change the little world i live in, if only a kind glance at the grocery store, a reverence for the hostas breaking through the ground, a reliable healthy person for the little hands i try to help.

i wish totally you will soon face the problem of not knowing how to deal and live without pain. ♥

love
kj

CreekHiker / HollysFolly said...

I feel this way at the ripe old age of 47... and I've felt this way for a good 10 years. OY...

Excellent and thought provoking post!

River said...

"no-one can tell by looking at you how much pain you're in"

Yep.
Up: people will offer you "a couple of panadols"
Down: a couple is never enough, hand over the box...

In the context where chronic means long term, I too have chronic pain.
Good days and bad days.
Things aren't so bad that I take painkillers everyday, but when I need them, I take much more than the recommended dose, and I'm still able to work, although not full time.
I can sympathise with those who have pain that others can't see, back pain isn't visible, nor is arthritis. But because I look well and stand upright, people often don't believe me when I say I need to leave work and lie down within the hour if I don't want to be unable to move the next day.

Stafford Ray said...

Why did you let fly because I presumed (not having followed the whole story) that it WAS shoulder surgery, when it was?
And while I'm here, PAIN is a bastard, so no matter how testy or obnoxious you temporarily become, you are excused.
And I agree with The Elephant's Child. If you woke up one morning pain free, there would be such a celebration and party you would have a relapes or a hangover at least!

RNSANE said...

Today, I went for my first PT session for this shoulder arthritis. I got up early, took a long hot shower, rubbed on my biofreeze with ilex, took my morning meds which included tramadol, two extra strength tylenol and an aspirin and headed out. Jeremy, the therapist, said I definitely had some loss of movement in the shoulders and the muscles of the trapezius, clavicle, etc and he reminded me that arthritis won't improve much but that, hopefully, he can help me decrease my pain. Let's hope so. Chronic pain, as you point out, is pretty hard to bear!

I am so glad that your surgery is proving to be successful since I will probably have to go that route eventually.

rhymeswithplague said...

I started to make a smart-aleck remark like "All this seesawing is making me seasick" but I have changed my mind because that could be construed as making light of your situation, which is definitely not my intent.

I am definitely glad that some of your pain is gone.

I don't know how to say this without possibly offending you, but I'm going to say it anyway. A friend once said to me in tears, "I'm just about at the end of my rope" and I said, "Good, now the Lord can begin to work."

Some things are just too big and scary to try to handle all alone. If that makes me a mental midget and a psychological cripple, so be it.

Snowbrush said...

I just wrote a long response and it all disappeared. I'm not going to try to recreate it, but I will say that, despite the feelings of progress expressed in this post, I'm now in so much pain that I can hardly sit still to write despite 900 mgs of Neurontin and 10 of oxycodone. It's possible that I tore something loose in there, but it's more likely that I simply overdid my exercises, or so I hope.

Marion said...

Excellent post, Snow, full of hard-earned wisdom. My chronic pain is getting worse and the doctor won't increase my meager pain medication. I'll admit I tried to do a little gardening and that's why I'm in so much pain, but I can't just curl up and die.

I sincerely hope you will get the gift of being pain-free. You've been through hell, my friend. I seldom write or speak of my pain all for the reasons you mention. People really don't want to hear about it. My poor husband is a saint, bless his heart.

Love & Blessings,
Marion

"People fear death even more than pain. It's strange that they fear death. Life hurts a lot more than death. At the point of death, the pain is over. Yeah, I guess it is a friend." ~Jim Morrison


Read more: http://www.brainyquote.com/quotes/keywords/pain.html#ixzz1KpUVEvjJ

Strayer said...

What are you feeling, survivors guilt? Enjoy what you get because it's soon gone. I've watched cat after cat die, some horribly, like that torti who crashed under anesthesia but hung on four days only to suffocate in her own fluids, screaming between attempts to breath.

Every soul wants to live. Nobody wants to live in pain or die alone or horribly. But it happens. I hope you make a full recovery and start making posts about climbing mountains or something you love to do and have not been able to do. I bet every reader wants the same for you, Snow. It's horrible when others have no way out, no end to their suffering. That's life. In the end, we're all dead one way or another, fast or slow. The world's a jungle no matter how we try to pretty it up to bear. People get torn up and eaten in this jungle every day.

All I can say is I hope you recover as much as you possibly can and enjoy the life you have left as much as you can. It's all we've got.

Robert the Skeptic said...

These past five weeks since my heart surgery have resulted in multiple visits to medical practitioners during the week, sometimes two or three in a single day.

The upside for me though is they seem to be working diligently to try to get me independent. I just shed the IV pump I had to wear for 6 weeks, they want to do another heart monitor but that is so they can decide if I can go off a specific medication. Best of all I am now off pain meds, I can deal with the aches and pains.

I sympathize when you say you "just feel broken", but the probability that we will both feel whole again is pretty good. It just takes time.

Snowbrush said...

Robert said: "I sympathize when you say you "just feel broken", but the probability that we will both feel whole again is pretty good."

Yes, but of course. Some of my posts are built upon rationality and some upon emotion, and this is the latter. For example, when I wrote that I was betraying my friends who can't escape their pain, I didn't mean it as a statement of fact (after all, betrayal requires intent), but as a statement of feeling. I sometimes worry that people will think that such irrational statements depict what I think, which they don't. Although they seem very real when I write them, my rational faculties are always at work in the background telling me that "this does not compute."

Phoenix said...

I feel bad leaving a comment when I feel I have nothing much to add to what others have already said, so it feels like one of those times when you're at a meeting when everyone has had something thought provoking to say, and then the one remaining person who hasn't said anything decides to just spit out random words to validate his or her presence, when really, he or she could have just sat there in silence and probably contributed more. But I hate feeling like a lurker either.

I think you have a couple choices when it comes to pain. You can hold it up the light, edges sharp, like glass, for everyone to see, and you can name it and you can know that it knows everything about you and you can still carve something beautiful out of it.

Or you can bury it, deep under your fingernails, and let it make you meaner, and angrier, and ask that the world treat you differently for it, and that the world owes you something because of your pain.

I'm glad you chose the former rather than the latter, Snow. You continue to impress and amaze me (and I don't mean that in any pedantic way.) I'm just honored to be read your posts.

Lorraina said...

I so get you Snow. You took the words right out of my mouth except i'm almost illiterate in comparison and couldn't begin to write what you wrote.

You know we can't go back, we're not the same people we were back then. We're somebody else now because of what we've gone through and we'll continue to change as we see our lives out. There is no going back, just forward. Today i suffer horrendous back pain, possibly due to a new med that could have helped the fatigue and of course i'm pissed off if it's going to mean energy but with backpain. But we've got to try and look at the bright side and stay alive, stay up all night watching the friggin wedding or something. I'm so thankful for the simple little things now, the telly and internet and my cat too. Tomorrow will be a better day so keep your chins up. I hope you'll tackle it with all you've got and i will too.

All Consuming said...

"For me to feel good when they cannot is to betray them." - I know you've commented that this is based on the emotion felt at writing rather than rational thought but I wanted to say that,when I hear you're feeling good it actually helps my pain by lightening my spirits. I do get what you are saying though, this post rings true in many ways. xx

Marion said...

This is such an evocative, truly amazing post, Snow.I second kj...this post is so good, it should be published for everyone to see...and understand chronic pain. All of your Ups and Downs resonate with me, but this one touched me in so many ways... For one who is in "THE UP: Pain is a school that teaches you that you’re tougher than you ever imagined. THE DOWN: The tuition is outrageous."

It truly is.

I dream about some day being pain free. Some days, it takes so much energy just to get through and I think about the women my age who are still as active and without pain as they've always been. I want to be that active, without suffering so much for it.

I hope, with everything I've got that, that you will feel no pain in your life eventually. I hope that for all of us.xx

pink dogwood said...

I have missed you and others in the blogland. projects at work are taking up too much of my time. I hope things to settle down in a couple of months.

Be well my friend :)

lyptis said...

Im sorry, reading about your pain is just too difficult for me at the moment. But i wish you all the Best and i hope you will get better soon.

Kerry said...

This is an amazing post. So much suffering. And now you are in even greater pain, but somehow facing the challenge casts your depression aside. An interesting psychology going on here.

I hope you feel better soon, and that the sunny weather lessens the shoulder pain while keeping your spirits up.

Robin said...

Snow....you disappeared from my blog list - for some strange reason....and now I have discovered you have had your surgery - were doing better - than now - not so good. I am hoping and p---ying that the pain has lessened and that it was over-exertion on your part.....

As someone who has been in a great deal of pain (emotions, not physical)....but the pain is just as great...for two years, all I can tell you is that REAL friends will always be there for you.... sadly, some friends you think are real - are not - and will vanish.

This hurts too....but - one can only go one and move forward. (Trite words - I know this - but am at a loss for anything more to say.)

EXCEPT.....I count myself as a true friend to you.....we disagree on SO MANY THINGS...yet, we are alike in many ways too. You are HONEST - and you are FUNNY - and...you have a KIND ♥. I am pleased and proud to count you as a friend.

DO NOT OVERDO EXCERCISES!!!!!

Hugs, always,

♥ Robin ♥

dana said...

The UP: you can visit people and NOT let them know you've fallen apart.
The DOWN: You must listen to them complain about that damn pimple on their nose.

I keep telling Joe that "hope kills". Whenever I get a glimmer of hope, the next day there is enough pain to kick the hope out of me. I get SO sick of hope....

Camp Fustian said...

Snow, have you tried acupuncture? It's worth a try, no?? Take care of yourself.

Wine in Thyme said...

I'm thinking maybe you've been irascible for quite a while, and your chronic pain gives you the opportunity to air this part of your personality out a little more frequently than might be allowed a pain-free person. That's just me thought. Irascible or not, I think you're ok.
(Chronic pain, chronic illness - it all sucks.)

nollyposh said...

i can completely relate to this post ~Thank you~ i hope one day i can now be of service to others because of this insight... (But i still wish it away already!)