When I first started this blog (at this current address), I vowed that I was going to write for entertainment and edification only. It wasn’t going to be a confessional blog. It wasn’t going to be personal except in a Thurberian way, as I shared amusing anecdotes about me and mine that wouldn’t ultimately make them hate me for sharing things that probably shouldn’t be shared. And for the most part, I think I’ve stuck to that, but this week’s post is going to deviate, because what follows is really all I can think about lately, and believe me, I’d love it to be otherwise. I can think of no less than a gazillion things I’d rather be thinking about than pain. That’s your warning; if you’d rather be entertained this week, I completely understand, and I’ve got you covered.
As most of you know, I’ve been retired for over a year due to my chronic pain issues, and the first year at home was pretty awesome for me. I was more active, and better able to do self-care as needed, and I felt much better overall. But this summer has been different. I don’t know if it’s some infelicitous combination of age, weather, and a progression of existing issues, but physically, I’ve been a wreck since June, more so than anyone other than Scott realizes. There have been a lot of bad, frustrating, really painful days, which curtailed a lot of my activities, or my enthusiasm for them, which is why there was, among other things, a month-long unannounced hiatus from blogging here. Unintended, unannounced breaks from a lot of activities seem to be the norm of late; I’m trying to live my life here, and chronic pain keeps interrupting it. So that’s what I want to talk about today, to vent a little and explain a little what it’s like. My experiences may be similar to others’ experiences with chronic health conditions, but pain is what I deal with, so that’s what I’m going to try to illustrate. Let me be clear: I’m not fishing for sympathy comments; they don’t help, and that really isn’t my intention. I just need to articulate my reality before it drives me nuts. Or more nuts, as the case may be. Because this shit’s real every day of my life and I need to get it out. If someone understands a little better as a result of my doing so, that’s gravy.
Chronic pain is having your dreams and fantasies shrink a little more with every passing week, as the number of things you can reliably, competently, and comfortably do grows smaller and smaller, until your greatest fantasy is sleeping through the night without the pain waking you up, or without waking up with a new mystery injury you didn’t go to sleep with, and you dream of being able to stand up straight in the morning without wincing. Twelve painless hours together is an impossible dream such that you try NOT to think about it anymore. You stop dreaming, because they all start to feel pretty impossible. It’s hard to live without dreams and fantasies, but harder to keep dreaming them and having them consistently discouraged, if not killed outright.
It’s guitars left unplayed because your hands ache with arthritis, seemingly a new addition this summer to an already heavy physical assault; and sitting to play will hurt your back one way, and standing for too long to play will hurt it another way; plus your shoulder’s acting up, too. You stop wondering if you’ll ever be part of a locally famous band, and start worrying that you’ll be selling your guitars in 3 years because you can no longer play them at all. It’s rushing to the chiropractor the morning of a training to help struggling kids read so that you can sit through the 4-hour training instead of canceling, and wondering during it if you’ll have to cancel on a kid who really needs reliability because it’s too much for you to get up, get in the car, drive across town, and sit for 2 hours with multiple kids, and be present with them, because your vertebrae feel like they’re grinding themselves into grit with every movement.
Chronic pain is living in a constantly vulnerable state, one of low-grade fear, never knowing when a rare relatively good day is going to suddenly go to shit because you did something wild and crazy like empty the bottom rack of the dishwasher, or step off a curb, or fill the dog’s water bowl. Even on a relatively good day, there’s always the voice in the back of your head wondering how long this will last, how much can you really do, and how much is too much, knowing you can take nothing for granted.
Sometimes you wake up knowing the day is already shot because you dared to go to sleep the night before, and somehow, in your sleep, you managed to throw something out of kilter. It is a life of canceled plans and rearranged agendas, disappointing both yourself and your pals, and eventually, a disinclination to try to make any plans at all, because you cannot count on your body cooperating when the day comes. It’s not trusting hope anymore, because you’ve felt good before, hoped it would stick, only to have it not. And you debate with yourself which is worse: no hope at all, or hopes that are continually dashed. When it never gets better, you kind of get used to it. But when you catch a (very) temporary break, and then it gets bad again, the mood crash is from a greater height, and hurts a little more when you hit bottom. You eventually give up hope for a better tomorrow, because you’ve lived through a now-countless number of shitty yesterdays. Hope is expensive, and reality has taught you daily for years that you can no longer afford it.
Chronic pain is like a terrible roommate you cannot evict. It affects everything that happens in your house, from the chores being done, to the mail being brought in, to your relationship with your spouse, repeatedly and negatively. It’s constantly in the way. It means you don’t do the things you want to do, because you know that if you’re feeling tolerably well now, you might not be later, and you only have the ability and energy to accomplish half the things you have to do, and so those come first. It leads to ridiculous workarounds, like the dining room chair I put in front of the front-loading washer and dryer so I can safely get the laundry done with a lesser risk of tweaking a hip or spine from bending over multiple times. Your spouse thinks it’s kind of funny, as if you spend your day watching the clothes go around and around like some surreal TV show, but while you can see the humor in it, you can’t appreciate it, because that chair is just another sign of your body’s failure, another sign that you’re trying really hard to carry on like normal, to do the things you need to do and are supposed to do, but it isn’t normal, and you’re already planning what to do when the chair isn’t enough anymore. It means you pour the dogs’ water and food into their dishes from 3 feet above (with the inevitable mess you will not clean up) because you don’t want to risk bending over and throwing your back out. It means choosing not to shave your legs on date night, because you don’t want to risk pinching a nerve at 9 in the morning, effectively canceling the marital frolicking you hoped would ensue that evening. Chronic pain is the biggest asshole of a cockblock ever known, and affects both of you in ways that make you worry for the long-term viability of the relationship.
Chronic pain is mysterious and largely incomprehensible to people who don’t suffer from it, and it leads to all sort of frustrating conversations and tongue-biting in the face of well-meaning sympathy and innocent ignorance. Like so many things in life, if you haven’t experienced it, you cannot imagine it. Most people, dog bless ’em, would find it impossible to imagine being in pain, sometimes excruciating pain, every single day for 10 years straight, and I hope for their sakes they are fortunate enough to never know what it’s like.
People often express jealousy of my retirement, but if they truly understood how I came to have it, I’m 100% sure they wouldn’t trade. Anyone spending 48 hours in my body would be begging to trade back. I’d go back to work tomorrow if I could give up the problems and the pain. But of course, they don’t know that, because going into a detailed recital of my personal, specific symptoms and the many diverse steps I’ve taken to try to address them over the last decade-plus is not something I care to do with just anyone, so I wave it away under the umbrella of “back problems,” which people think they understand. But because I do that, and folks think they’re dialed in about my “back problems,” they do not trust me to know my own strengths and weaknesses, loudly advising me against some activity that I know I’m perfectly capable of doing (“Don’t lift that!”) and baffled when I can’t do something as simple and apparently enjoyable as a long walk. I would love nothing better to enjoy a long walk, if it didn’t cripple me a bit more with every step and require a 3-day recovery and a trip to the chiropractor and the massage therapist. But when a fat woman with orthopedic problems walks into most medical practitioners’ office, they instantly say “You need more exercise,” and stop listening as you try to explain, “Don’t I know it; that’s why I’m here…to get help so that I can.” Somehow, that never clicks for them. But I guess you’d actually have to listen to, and believe, a patient for it to. And that rarely happens in doctors’ offices, in my experience.
Chronic pain is losing all faith in medicine, because you’ve exhausted all the doctors, all the therapies, most of the drugs (and the ones that remain either don’t work or have such unpleasant side effects that it’d be a wash) and none of them would, or could, help you. And occasionally it gets so bad, you wonder if you should try one more time, but you’ve been on this stupid carousel so many times, you just can’t make yourself do it. And it makes you wary of trying new alternatives because you don’t want to keep throwing good money after bad and have it not work. Again.
It’s receiving all kinds of advice from people you know love you and just really want you to feel better, for your own sake, and trying not to hear it as “You’re just not trying hard enough,” when all you can think is that they have no idea how hard you try every single day just to deal with your life with anything approximating your pre-chronic-pain ability and approach. And then worrying about offending them and their loving intentions when you dismiss the suggestion because it’s either something you already tried, or because you know your body well enough to know it’s not going to help.
Chronic pain is a constant battle, fought with accommodation and allowances born of acceptance of the situation, to try to keep the life you’ve created together, and as close to the same as you can. When that doesn’t work, you go to your second line of defense, which is trying to ignore the pain and do things anyway, followed by gritting your teeth and doing things anyway when every cell in your body is screaming no, and you can’t ignore the pain anymore. You try to stay positive, try to stay cheerful, but sometimes you just run out of coping strategies, and there’s nothing left but to sit on the edge of the bed you are having a hard time standing up from and cry because you’re exhausted, frustrated, and demoralized by losing so many of those skirmishes, despite all your efforts. And it is a different kind of pain to realize that you’re losing ground all the time. Chronic pain so often feels like a constant retreat, even if you still have the wherewithal to refuse complete surrender.
Chronic pain is losing yourself, too. It’s losing your identity as being all those things you do and share with the world, and even those things you do just for you. It keeps you from being there for others, too, because you don’t have anything left to give. I have not been the emotionally generous, funny, supportive, happy-go-lucky Kristie that I think most of my friends would recognize and have come to expect. I’ve been down a lot in recent months. I have a hard enough time getting through my days myself that I haven’t been nearly as supportive of others as has been my wont in the past, nor as patient. I have to pull in what energies I have just to keep it together, so people and things on the periphery of my life get cut loose entirely. Not that that’s necessarily a bad thing, because there are probably good reasons they’re on the periphery; it just might be surprising, to me and to them, that I’m so willing to let go now when I wasn’t before.
In an emergency, you make hard decisions about your priorities, and chronic pain is kind of like being in a chronic emergency, if you can imagine such a thing. If your body and your patience are only going to take you so far in a given day, and how far is forever an unknown (but definitely limited) quantity, you have to choose carefully where you’re going to go, how you’re going to spend your time, and with whom. You only have so many spoons. But making those choices changes you. Each one is a loss that is mourned to greater and lesser degree. As your life gets smaller, you start to feel pinched, hemmed in by who and what your body allows you to be, vs. who and what you were, or want to be. It’s hard not to resent that. It’s hard not to grow hardened, even as you realize that doing so means the pain wins. And you don’t want it to win, because it’s already taken so much from you. It’s funny how much physical pain can result in you getting locked inside your own head as you’re trying to navigate it all and make decisions for yourself that keep your soul vibrant and healthy even if your body isn’t.
Chronic pain takes as much a mental toll as it does a physical one, especially the longer it goes on. Friday, after going to bed feeling pretty decent the night before, I woke up with my back all out of whack. I started the day at the chiropractor, who helped some, and I got through my day, but by evening and throughout Saturday, it got so bad, it hurt to walk at all, and I had to cancel my plans for the evening. Sunday morning was more of the same, but I accidentally gave myself an adjustment while drying off after my shower, and it was so much better (not 100%, but still better) that it felt like a miracle, and I prayed to the universe to let it be the start of a miraculous spontaneous healing. That’s how desperate I am, because I’m not a person who prays. I got an hour and a half of it feeling better (most of which I spent napping because I didn’t sleep well the night before because of the pain, and I didn’t trust it not to go right back out) before it started to go south again. So much for miracles. An hour and a half of relief. Of hope. That’s all I get. I can’t live my whole life in stray hour-and-a-half chunks every few months where I feel pretty good. I’m tired, beyond tired, and angry about it, when I’m not totally depressed about it. It’s not even at its worst right now. I can still function. But the months and years of it never being better than tolerable pain just grinds me down. “Never gonna get better, and probably gonna get worse” is an exceedingly shitty reality to reckon with every goddamned day. Realistically, I still have half my life ahead of me, and I’m terrified of what it will bring, if it’s this bad at 41.
Chronic pain is normally keeping all this stuff to yourself because nobody wants to hear it. It’s not fun; it’s not pleasant. It makes folks feel sad and helpless, because they can’t do enough, or anything, to help you. It makes them worry you’re going to do something drastic, and you cannot reassure them that it’ll never get so bad that that won’t be a real option. It’s protecting others around you so that they still want you around, because nobody wants to listen to you complain about your pain, least of all you, because as tired as anybody else may be of it, you’re tired, sad, helpless, and worried times a thousand, because for you, there is no protection, and there is no escape. And in that, it is lonely and isolating. And if you’re an introvert to begin with, it just makes you withdraw, because during the times when you cannot work through it or see past it, and other people will never understand, you just have nothing to offer.
And maybe that’s it in a nutshell…chronic pain just makes you, your available consciousness, and your world smaller and smaller, until you wonder when you’ll just disappear.