beeb beeb

my body hurts in lots of different ways

12x16 in. acrylic on canvas. 2023.

i can't remember the first 10 years of my life. i can't remember entire days, weeks, months at a time. i can't remember entire people, i can't remember names or faces. i can't remember when things are scheduled for, my calendar app on my phone is booked to the max with reminders and task checklists. i can't remember when i moved into what home when, i can't remember important milestone dates like when i got or lost certain jobs, or when i started a new hobby.

that's what i mean when i say i have poor memory. poor memory is so scary for the person who has it. it's not a quirky thing, everyone forgets small details. memory problems are scary because you can go through entire events or days with no memory, or plan for things in the future that you can't recall ever even looking into or scheduling. it's not a funny haha kind of thing, it's serious, and it affects a lot of people in very unavoidable ways.

It's the problem of: "how dare they treat us like those people!"

The problem with ableists isn't that they assume we can't walk The problem is they assume we don't need our wheelchairs if we can. That we don't need our handicapped placards or transport vehicles. That we are taking advantage of other "actually" disabled people, that the ableists also don't give a shit about unless they're using them as an excuse to be ableist.

The problem with ableists isn't that they assume we are intellectually and/or developmentally disabled. The problem is they assume that every intellectually/developmentally disabled person needs to be treated with baby talk, dismissal, and ignorance. That they don't see them as people and refuse to listen to intellectually and developmentally disabled voices without making fun of them.

@irrellavant oops you activated my trap card of asking about something I care about, please enjoy this monologue. Also it’s not comprehensive, can’t stress that enough, this is a just a lil long tumblr post made by a just some nurse who isn’t a palliative care expert and is also writing this on her cell phone on break. Some of this stuff is gonna be pretty obvious! I just would feel remiss if I left it out. And also please anyone who has pain or addresses pain, please feel free to add on. I'm always looking for new ideas and new insights, especially from the patient side so please please do chime in if you like. Okay SO

For me, the biggest thing is conveying to the patient that you care that they are in pain and that you are trying to make it better. I remember I had a patient who was in horrible pain all night, we never got it down, we never got her comfortable, but at the end of the night she thanked me so sweetly for trying and she said that knowing I was taking her pain seriously helped her feel better even if it didn't make her hurt less. Just because someone is in pain, it doesn't mean they have to suffer, if that makes sense. I think one of the worst things about pain in the hospital is the feeling that you've been abandoned to experience it. Someone gives you a pill (or not even that) and says "okay bye" then you go back to writhing in agony. I make sure that before I leave the room of a patient who is still in a pain crisis, that I let them know what the plan is and what the next step is. "You just got 5 mg of oxycodone, which will take up to an hour to take full peak effect. If your pain doesn't get better after that hour, I can give you another dose" or "I'm going to go page your doctor to see if I can get you an additional dose" or "I need to step away right now, but I'll be back in 20 minutes to see how you're doing and if the heating pad is helping." I tell the patient "we're gonna try X, which should do Y, but if it doesn't, the next step is Z” and then I make sure to follow up with them.

I also try to be honest. I never promise that they'll be pain-free, just that we'll keep trying. We aim for small but achievable goals. If it's acute pain, like you just had a surgery or something, I try to contextualize it for the patient. "We're not gonna get you pain-free ten hours post surgery, but we can get you more comfortable than you are right now." Patients are usually fine with being a six outta ten pain if they’ve been otherwise sitting at a nine. Since I’m night shift, I often tell them my goal is for them to get at least a couple hours of sleep and ask them how that sounds.

Then pharmacologically, I look at the meds I do and don't got. If a patient is having incisional pain, lidocaine patches on either side can be great for just numbing the area up. If the patient can get oxy every 6 hours but routinely gets very painful again just three hours after taking the med, then maybe the dose or the timing is not right. Maybe under prns we've got so many opioids and not a single NSAID, and there's not a contraindication. Maybe their pain is caused by muscle spasms, in which case a muscle relaxer could be a great addition. Maybe the pain is nerve pain that would respond much better to gabapentin instead. Or maybe you need IV dilaudid to quickly get the breakthrough pain down to a manageable level so that the other meds have a fighting chance to do anything. If meds aren’t available, these are things you can page the doc about and discuss with them.

I'm also a big fan of around the clock medications for patients that have had poor pain control. Ask patients if they want to be woken up for pain meds (again, patients that have been that painful usually say yes). Explain how it's easier to keep the pain low than it is to play catch up after pain spikes. Pain control works best when you avoid the spikes in the first place. There's no point getting someone out of a pain crisis if you then withdraw all your cares until they're in a pain crisis again.

I also try plenty of non-pharmacological methods of lowering pain or enhancing comfort. (Sometimes you can't lower pain! Sometimes all you can do is enhance comfort!) Does the patient have a topical cream that helps with pain? Could it be applied while gently stretching the muscles and really going to town with a foot massage? Has the patient just thrown up and would like a bed bath to feel clean again? Would they benefit from heat? Or ice? Or warm blanket? Ice and then on top of that a warm blanket? Do they want some pudding? Do they need a little candy from the nurse station candy drawer? If their lower back hurts from being in bed so long, can we get them out of bed? Even if it's three am and we need to lift them with a Hoyer to their recliner, that might still be the best intervention. I had a patient where the only thing that helped her hip pain was going on walks so over the night we went on a bunch of walks. Worked better than any meds.

What about conversation? Do they need someone to cry with? Do they want to talk about pets or their diagnosis or the bizarre TLC show that's playing on the TV? A lot of this is feeling out conversation, and I don't have great advice for that besides if you make yourself obviously available and interested in people, they tend to open up to you.

Also I’m a big fan of asking if there’s anything I can do while we wait for the meds to kick in. That’s usually when I do a bunch of those non-pharm interventions, because it’s efficient (we are in fact waiting for the meds to kick in) and it makes the waiting less miserable. I think it also makes the waiting feel less helpless. We aren’t just waiting an hour for the dilaudid to do something, we’re also tucking you in with a warm blanket and giving you the finest jello I could scrounge up.

And obviously, I ask the patient if the pain they're currently feeling is uncommon for them, either in the type of pain or the intensity. This is good for general assessment stuff and to figure out if the pain itself is the problem to be managed or if there's something new causing the pain. If the cause of the pain can be managed, that's my priority with pain medication as a supportive therapy because like if you're a paraplegic and suddenly you're complaining of an intense pounding miserable headache, giving tylenol isn't the right intervention when what I should be doing is assessing for autonomic dysreflexia.

And I ask them about the type of pain they're having and if they know what works for them to manage it. Plenty of chronic pain patients can tell you what is and isn't effective. Maybe at home they're on 50 mg of oxycodone a day, but right now in the hospital they're only prescribed 40 mg. Or hell, they're still getting 50 mg but they're here because they’re sick so their baseline level of opioids isn't gonna be enough because that's to manage their every day pain and not their new super hell hospital pain. Or they know aspercreme works like a dream on their legs but not on their back. Or patients know that ibuprofen works better for them for this type of pain than a fentanyl patch does, or they don't want to take dilaudid because it makes them nauseated, in which case you can try premedicating them with an antiemetic.

Also when your shift is done, write down all the stuff that worked to control pain in your nursing note so there’s a record of it in case someone needs to do it again.

For people whose condition is under researched. For people whose condition is rare. For people whose condition doesn’t react to typical treatment. For people whose condition interacts with other comorbidities in unpredictable ways. For people without access to specialists.

It can be exhausting not knowing how your future (weeks or decades) will look. And it can be exhausting trying to explain to people that you don’t have the answers, that you don’t know if you’ll get better or when. It can be scary not knowing how to move forward, and what treatments to seek.

Every day, several times a day, I work to make sure I am drinking enough water. If I don't. It will affect my chronic illness. I will feel ill and everything will be harder.

Everyday I try to make sure I eat two to three meals. Sometimes it's hard because I feel ill, sometimes it's hard because, mentally, food is repulsive. If I don't eat I will end up feeling more ill.

When I am standing I have to make sure I don't stand for too long. If I don't I will feel faint.

When I am sitting I have to make sure I am not sitting the wrong way. If I don't I will strain my joints, I might pull them out of place. I will be in pain for days.

Sometimes a change in the weather will make me feel ill.

Sometimes a change in the air quality will make me feel ill.

I have to check the ingredients of everything I eat or I will be ill. I'm not just looking for one thing. It's dozens of things. Some things only become a problem depending on the amount. Some things only become a problem depending on how they are processed. It's a constant struggle to remember everything. If I make one mistake I will have digestive issues.

But if I get too stressed or am having other chronic problems flare up I might have digestive issues anyways.

When I am stressed I try not to tense up my muscles. If I do, I will be sore for days. It might affect my joints.

But it's easy for me to be stressed. Small changes to my routine are painful. I get overwhelmed by people, by noise, by unexpected change. I work hard to manage it but it's hard.

Sometimes something very normal happens but I have trauma so it feels incredibly not normal for me. It might take days to figure out what exactly happened and how to dig myself out of my emotions.

My memory is poor. There is so much I have to remember to stay mentally and physically okay. Not even good. Just okay. It's so hard to remember everything. There is almost always something falling through the cracks.

I get tired easily. Even just maintaining my mental and physical health is exhausting. But if I don't do it it is even MORE exhausting.