What She Left Me
October 4, 2015 6:02 AM   Subscribe

"They’re such small things —a big toe, an ankle joint—but if they’re yours and they hurt, they become huge. Once it became painful to walk, I found myself wondering if the cancer was coming back, as it can, in my feet, which made me think about the hysterectomy I’d undergone just months before. I found myself thinking, if I cut off my feet, they wouldn’t hurt."
posted by listen, lady (34 comments total) 31 users marked this as a favorite
 
This describes the past year of my life. Living with severe chronic pain is an experience you can never fully share with anyone. They can't see it, so it's something you bear in solitude. It makes you recede from everyone and every thing because you are too drained, too irritable, too razor sharp to be pleasant company. It forces you to be self-absorbed to the point of distraction. It's like having your life and your body devoured by slow-motion piranhas - little pieces eroding away, bit by bit. You never realize it's the last time you are ever going to go hiking, or dance, or have sex, or hold a baby until its already passed, and then all you can do is mourn. 45 is too young to be missing so many pieces.

Thank you for this. I needed some commiseration this morning.
posted by evilcupcakes at 7:05 AM on October 4, 2015 [60 favorites]


I too, fully understand, as I sit here, slathered in voltarin gel, steeling myself to pretend I'm ok, so I can get shit done. My doctor, who can't understand why suddenly my ligaments have stopped working, and my joints are coming apart, and why I've gone from a rowing, weight lifting, metal sculptor who moved 100 pound bits of steel around the studio to an overweight marshmallow that struggles with a gallon of milk in a time span of less than two years, thinks I've got lupus or MS, but for a real diagnosis, I need to see a rheumatologist...and I can't get in to see one until December, because American healthcare sucks, and in the meantime, here take these narcotics, after all, it's not that bad, is it? Some days I really think, fuck...death would be easier than crying as soon as I wake up.

Tl;dr, chronic pain sucks.
posted by SecretAgentSockpuppet at 8:01 AM on October 4, 2015 [25 favorites]


I've had two back surgeries and now live in a world of constant pain (of varying intensities, depending on...the moon?) and a very restricted range of physical activity. As a guy, it starts to feel like you're just making lame excuses all the time for why you can't do physical work like all the other men can. Just an afternoon taking a walk with my wife can put me in bed immediately because of the discomfort. You really do feel useless a lot of the time because of the way you have to live around the pain.

Whenever I am away from home for any period of time, I always carry a small parcel of my various pain meds because you never know when you might accidentally make a wrong move and be in serious need of medication just to be able to get back home.
posted by Thorzdad at 8:40 AM on October 4, 2015 [12 favorites]


I've been in chronic pain for the last two months, owing to a foot surgery gone wrong. The worst part (other than the pain) is the hope and uncertainty. Will I get better? Am I getting better? These are questions you cannot answer. It makes it impossible to plan for the future. You'll have a string of good days and then one really bad day and then you'll be back to wondering if you're actually improving at all.

But reading this essay and hearing from you all makes me feel less alone. And that matters. A lot.
posted by panama joe at 8:44 AM on October 4, 2015 [6 favorites]


I've known a few people who've done back surgeries, and zero of them have had good results. All of them say they wish they hadn't done it, which is why I declined to have part of my spine fused or something to "help" with the spinal stenosis. I decided small amounts of hydrocodone was a better option than ending up in constant agony with an oxy scrip like my mom.

Edit to add, I did foot surgery to fix damage from dancing en pointe and wearing stupid high heels. I only did one foot, holy mother of god....almost 10 years later, and I still regret that. It probably is a big factor in why I refuse surgery now.
posted by SecretAgentSockpuppet at 8:44 AM on October 4, 2015


ugh this is too real. i'm so tired and cranky but at the same time i have enough energy and physical capability to actually still DO STUFF like work out or do laundry or clean the house. it's just that i can only do one thing in a day, and after that one thing is done my day of doing things is also done. if i do two things in one day then the next 2-3 days are useless. and it feels super shitty to have to constantly cancel plans with the few friends i can still deal with seeing who don't make me feel bad about not being able to do stuff.

like SAS above i too could get surgery but of the two people i know who've had surgery for cervical stenosis, one is hooked on painkillers and the other took a 25 story dive. neither seem like optimal outcomes.
posted by poffin boffin at 8:55 AM on October 4, 2015 [5 favorites]


Don't have time right now to fully respond, but I so identify with this writer. I grew up watching my mother suffer with so many of the maladies I have now. I've spent my life questioning her decision to have children knowing what their probably health would be like.

And oh, my god, yes, the part about pain aging you. I first started considering myself a crone at age 10, which is when the arthritis first flared up badly and I was officially diagnosed.
posted by The Underpants Monster at 8:57 AM on October 4, 2015 [4 favorites]


and really if people could stop saying "arthritis? but you're so young!" in highly disbelieving tones that would be fucking great
posted by poffin boffin at 8:58 AM on October 4, 2015 [27 favorites]


SAS, have you looked into Ehlers-Danlos Syndrome? It is what I have and a lot of what you said matches up. Just a thought...
posted by futz at 9:34 AM on October 4, 2015 [2 favorites]


I know someone who has Ehlers-Danlos Syndrome and yes this does sound similar.
posted by djplumbing at 9:40 AM on October 4, 2015


There are several types of EDS and they often overlap. You probably would want to start looking into "hypermobile" type.
posted by futz at 9:44 AM on October 4, 2015


I've known a few people who've done back surgeries, and zero of them have had good results. All of them say they wish they hadn't done it, which is why I declined to have part of my spine fused or something to "help" with the spinal stenosis.

Yes, I've heard that, too. In my case, though, I was at the "pain so intense your knees buckle, you can only see flashes of blinding white light, and your screaming is so intense you can't get the noise out" stage. So, thoracic back surgery really was the only option. I'm glad I did it, simply because I don't have that extreme level of pain anymore. But, I live every day in fear of doing something stupid that might re-injure my back and bring it back.
posted by Thorzdad at 9:47 AM on October 4, 2015 [2 favorites]


beware of surgeons with their knives
for they don't have to live our lives
posted by panama joe at 9:47 AM on October 4, 2015 [1 favorite]


I've not heard of EDS, I'll look it up. Thanks!
posted by SecretAgentSockpuppet at 9:49 AM on October 4, 2015 [2 favorites]


That was a really moving essay.

Living with severe chronic pain is an experience you can never fully share with anyone.

Living with a person with chronic pain puts you partly into that bubble, from having to explain to people why you are declining invitations, to having to plan ahead and prioritize in new ways -- you can go to the art museum, or you can go out to dinner, but you aren't going to do both, say.
posted by Dip Flash at 9:59 AM on October 4, 2015 [8 favorites]


I've known a few people who've done back surgeries, and zero of them have had good results.

I had a microdiscectomy almost two years ago and while I get a little soreness at times, it's no comparison to the brain-blanking white-hot pain that I had this time two years ago. I'm sitting here sweating from 1/2 an hour on the elliptical and feel feel great. No running allowed for me anymore but I can walk and bike and swim and drive a car for eight hours without pain when this time two years ago I could barely walk across the room.

Obviously time will tell if I made the right decision and I've hopefully got thirty or more years to find out but right now I don't regret surgery at all. I tried pain killers, steroids, epidurals and physical therapy but nothing helped a bit.
posted by octothorpe at 10:36 AM on October 4, 2015 [1 favorite]


things you should not say to people with chronic pain:

- "well you did X just fine yesterday, why can't you do it today?" (because doing X exhausted me)

- "my friend had [something totally unrelated] and they can do X" (i don't care about your friend because we don't have the same problem)

- "my friend had [something totally unrelated] and they were cured by wearing this copper bracelet" (can u not)

- "well you LOOK fine" (i'm glad your x-ray vision can see my spine to help your medical degree diagnose me as a faker)

- "you just need to drink more water/get more sleep/eat better" (you need to STOP)

- "you should go to a doctor if it's really that bad" (wow i never thought of that let me ask the 5 doctors i already see what they think)
posted by poffin boffin at 10:42 AM on October 4, 2015 [32 favorites]


There's something about serious autoimmune problems that makes pain so much worse.

Before all that got started, I happened to break my leg pretty severely -- I split one tibia halfway up to the knee -- and waited three days to see a doctor, until bleeding into the ankle joint made it the size of a volleyball, and I had a great time during that three day period even though I could only get around by crawling, or hopping on my left foot; my partner and I went places, had sex several times, made great dinners, had deep conversations, and etc.

But later, after whatever's wrong with me really settled in, back pains, stomach pains and joint pains I would have almost laughed at became so intense I'd essentially dissociate.
posted by jamjam at 11:01 AM on October 4, 2015


I've known a few people who've done back surgeries, and zero of them have had good results.

I know several people who have had back surgery, and they've all recovered to the point where they're either "normal" or have other issues that are more important, so they never talk about back issues. Except one friend who was disabled for a couple of years and spent almost a year in hospital before having surgery, and can't resist telling people how he thought he'd never walk again. /anecdata (and Canadian anecdata at that.)
posted by sneebler at 11:22 AM on October 4, 2015


A friend of mine was recently diagnosed with Ehlers-Danlo Syndrome this past week. I've been keeping up with her health problems via FB and I am so sorry that she feels rotten and broken most of the time. She had had surgery last year for something involving her lower intestine and then things just got worse. She is probably the closest person I know who lives with chronic pain and is very candid about it.

I wish I could make all of you feel better!
posted by Kitteh at 11:52 AM on October 4, 2015 [2 favorites]


My neighbor has chronic pain from injuries and surgery gone wrong.... he goes to the doc every month to get a script for his pain meds because "drugs". And he's now moving into morphine level for the shooting pain that sends electric shocks down his legs which, the oxy no longer works for..... he also self- treats with alcohol to help. I just cannot imagine how awful he feels all.the.time but can understand his problem. I mainly go over and visit since he cannot go out and socialize. His wife of over 50 years is his caregiver, so I take her to the symphony and try to get her out as much as possible.

Which is all said to illustrate how chronic pain impacts many lives...I'm not only caring for my household and my mother (dementia) but I also mow their lawn and buy groceries for thlem and provide a bit of moral support.... but the medical 'system' has failed him and his whole support network. She is stressed from worry and looking after a person who isn't the same caring person she married, he is medicated to the point that he's not always sensible, and it's not what they expected for their retirement after so many years of hard work....

Why can the pain not be properly managed!?!?! There is so much we don't do for folks who are in pain. It's almost vicious.
posted by mightshould at 3:00 PM on October 4, 2015 [1 favorite]


I should get the results of a couple of biopsies today or tomorrow for skin cancer. Odds are that they are BCCs. But one of them could be an SCC. Not normally a big deal, especially in Australia. Except that I have Ankylosing Spondylitis (a cousin of Reiter's) and receive Infliximab infusions (same category as Humira) as my primary arthritis med. If I have an SCC, I've been told I'll likely have to stop the biologic at least until I get an all clear.

I already have enough difficultly with daily pain and use opiates and steroids to moderate it. But the thought of returning to the totally debilitating pain I've had in the past, with no ability to restart the biologics would be enough to consider ending things.

I've told most of the folks I have regular contact with about my condition, if only to explain why I sometimes need a walking stick. But I don't talk much about the in's and out's of each ache and pain and the persistence of the whole damn thing. It seems both pointless and selfish.

FYI, Reiter's Syndrome is now more commonly referred to as Reactive Arthritis.
posted by michswiss at 3:04 PM on October 4, 2015 [1 favorite]


It is vicious! I could write a novel about all of my dealings with familly doctors/pain docs/orthos etc. And I just might because I have kept notes. They really don't care about the patient if they can't fit you into their box filled with preconceived notions.

Spend an hour reading online forums for docs sometime and you will see what they think about patients like me. Apparently I am a junkie trying to scam them in spite of my lengthy medical history, multiple failed joint surgeries and a definitive diagnosis from 2 nationally known geneticists. And clean drug screens! I could go on and on but I am too depressed to do so right now. Chronic pain robs you of a "normal" life and when doctors who are supposed to help you fail you over and over again what are you supposed to do?
posted by futz at 3:28 PM on October 4, 2015 [2 favorites]


I don't particularly mind the hassle I have to go through to get maintenance pain medication. It just doesn't work that well, especially if I'd also like to be able to function.

I shouldn't be complaining, really. I see plenty of people every day far worse off than I am. It's just that one doesn't get the chance to talk about these things that often*, so when one does, the floodgates tend to open.

*There's a lovely German poem called "An die Einsamkeit" ("To loneliness/solitude") by Johann Timotheus Hermes that was set to music by Mozart in 1780. The first verse:

Sei du mein Trost, verschwiegene Traurigkeit!
Ich flieh' zu dir mit so viel Wunden,
Nie klag' ich Glücklichen mein Leid:
So schweigt ein Kranker bei Gesunden.


INCREDIBLY ROUGHLY, translates to:

Be my consolation, secret sadness!
I fly to you with all my wounds,
I don't complain about my sorrow to the happy,
Just as the sick are silent around the healthy.

Fluent German speakers are more than welcome to help me out. I couldn't find anything better.

posted by The Underpants Monster at 6:24 PM on October 4, 2015 [2 favorites]


This post resonates deeply for me. I had been in a deepening, spreading chronic pain for over 30 years, had spinal surgery for sound radiological reasons that helped just a little, and this decline was then capped by an unexplained lung failure/ICU stay/coma with neurological complications that left me ready for a wheelchair according to my fancypants neurologist. Nothing was helping, drugs and rehab did nothing, so after a year and a half of failure, I at last abandoned traditional medical strategies. I had, literally, nothing to lose. Although I was from a medical family and completely socialized to standard medical thinking, I then embarked on a deep exploration of alternative healing modalities and thinking and, in the end, radically changed my diet, started a hefty regimen of supplements and healed myself back to functionality over a few years despite my decades long history of disability and all (ALL) my doctors (including multiple family members with MDs) ridiculing the possibility. Well, it took me becoming a nutritionist and patient advocate out of my frustration, but through that process I finally learned that I had multiple autoimmune conditions relating back to gluten and dealing with food allergies and gut healing and immune balancing did the trick and put me back on the road to health. Oh, that and healing/fixing my rather deep malnutrition. So, with this experience, I can only counsel others to be skeptical of doctors and their narrow opinions, to be skeptical of the role of pain meds and anti-inflammatory agents, and to please try to seek relief in fixing neural inflammations and immune function through diet and lifestyle change because this is the true root of pain. Sure, genetics and environmental exposure to unknown toxins can play a role, but I am still astounded by my success and the steady improvements I see in clients who actually listen to my advice. It is a slow route to healing, to be sure, but it is the only one I know.
posted by cultcargo at 7:05 PM on October 4, 2015 [4 favorites]


See, I've had the exact opposite experience. Maybe it's because I live in a hippie college town, but my doctors have basically called me a liar because giving up corn, wheat, eggs, dairy, soy, and sugar didn't cure the multiple autoimmune diseases that have run in my family for generations. I must not really have even tried giving up those foods, because everybody knows that paleo cures MS, so QE fucking D! My insurance doesn't cover yoga or acupuncture or trips to the desert; I'm able to afford occasional visits to the massage therapist because my employer has one on the payroll and I can pay in installments, but I certainly can't afford to go every week.
posted by The Underpants Monster at 7:28 PM on October 4, 2015 [5 favorites]


yeah, no matter what i eat my vertebrae are still going to crush my spinal cord until i can't feel my arms anymore

that's why i am eating this cake
posted by poffin boffin at 7:33 PM on October 4, 2015 [14 favorites]


No diet is ever going to cure my arthritis or shredded connective tissue.

Glad you found something that seems to work for you.
posted by futz at 7:51 PM on October 4, 2015 [3 favorites]


PT used to be covered under our provincial health insurance plan. Now, patients between 18 and 65 only get (a limited number and kind of) subsidized PT sessions after an overnight hospital stay. If you don't have private insurance, you basically have to wait until things get bad enough for surgery in order to access care that's not NSAIDs. Even then - I know someone who had a knee replacement, she got a handful of sessions. I really hope she's not just getting a TENS machine.

I can't afford all the PT I need for my multiple (chronic and acute) soft tissue injuries. I'd have to go 4-5 times a week in order to properly deal with everything that's happening right now (and a new thing seems to come up every month or so). I can manage one session a week; I prioritize it. (Because my other option is not being able to wash my hair with my dominant hand, or use stairs.) We address the thing that's most painful or limiting that day/week, there's only time to quickly check in on some of the others. I travel three hours round-trip to see this PT, btw, because unlike too many I've seen, she knows her stuff + has helped me walk etc.)
posted by cotton dress sock at 8:24 PM on October 4, 2015 [1 favorite]


Nobody living with chronic pain hasn't considered dietary/nutritional implications. It does not need to be suggested unless you think they're stupid.

and really if people could stop saying "arthritis? but you're so young!" in highly disbelieving tones that would be fucking great

I probably have said that before, and now I hope my tone of voice appropriately communicated my tone of "that is some goddamn unfair fucking bullshit and I am sorry" rather than any sort of disbelief.
posted by Lyn Never at 8:26 PM on October 4, 2015 [8 favorites]


Excellent piece, listen, lady. Thanks for posting it.

I've been in chronic pain for over a year now and need to use a walker to move around (which makes the monthly trek to the doctor's office and pharmacy a pain in the ass) due to avascular necrosis in the heads of both my femurs. In my case surgery should be fairly straight-forward (I need to get both hips replaced) but due to bad fucking luck I've had to reschedule several times now, but at least I have the prospect of being functional again if the surgeries go well. In the meantime, every aspect of my life orients itself around pain and disability. Ugh.

(Unless my bad luck was actually the will of Loviatar, in which case I may need a cleric more than a surgeon.)
posted by homunculus at 12:08 PM on October 5, 2015


The best thing that ever explained chronic illness and disability (to me) is the Spoon Theory
posted by aclevername at 5:05 PM on October 5, 2015 [4 favorites]


I get nervous when people talk about diet and supplements curing them. Not that I doubt your experience cultcargo; just that this type of advice doesn't help most people, and frequently ends up being a moral judgement towards chronic pain sufferers. It also puts people at risk for exposure to snake oil salesmen in an unregulated supplements market that we're coming to discover often don't even contain the products they claim to contain.

That isn't to say that some people won't have hard to detect celiacs - especially when doctors are loath to do biopsies when the antibody screening is negative even though we know antibody screening isn't perfect. And some people will improve with a better diet. For some people, the placebo effect is enough- we know certain mental trickery works works in certain pain disorders and can be shown to be reproducible in certain types of cases. In Complex Regional Pain Syndrome the pain and inflammation is real, and yet mirrors are enough to trick the mind into calling off the unnecessary onslaught in some cases. Unfortunately, this will only help a small number of chronic pain sufferers and only a small number of conditions.

But because western medicine lacks cures doesn't mean that alternative medicine holds them. I know my own dalliances in gluten free, diet changes and supplements didn't do much. I did lose some weight, which was nice, but did nothing for my pain (not even joint improvement many see with weight loss since joints aren't the problem for me). When pain is grinding you down all the time, every day, Poffin Boffin has the right idea about cake.
posted by [insert clever name here] at 6:35 PM on October 5, 2015 [5 favorites]


This is a fantastic essay, deep and beautifully written. I'll be sharing it around. Thanks for the post, listen, lady.

I don't have chronic pain myself (touch wood) but a number of people I'm close to do and it's utterly shitty. I know all about having an autoimmune disorder that's been passed down by each of your foremothers, though. That bit about hearing your mother's voice in your own, recognising her gestures in yours — yeah. I have no idea how my mother raised three children, so close in age, while feeling so tired for years and years. She passed on a lot of health issues to me and my brothers but, although I've given a lot of thought to it over the years, I didn't definitively decide not to have kids of my own until my partner was diagnosed with a condition that would make a terrible combination with my autoimmune thing. I always thought that, if I passed it along, at least we'd recognise it and be able to treat it early. But I never really longed for kids of my own, so deciding against them was easy. (It might make dealing with my latest health issue easier, too.) My mum always knew that she needed to have children and a family. If she'd got ill before having me, I don't know that it would have changed her mind, and I certainly can't say that it should have.
posted by daisyk at 3:51 AM on October 6, 2015


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