Melvin & Me, Part 37: Trusting the Body

I have said before and I'll say again that I have many reasons to not trust my body.  It's a very particular grief, processing that kind of betrayal--most people are unaware that it's even an option until it happens.  There is a difference between wanting your body to do something it cannot do and being betrayed by one's body.  I identify with a lot of my older patients discussing this problem, particularly the patients that were faced with needs significant enough to require nursing home placement (temporary or permanent).  There are many things that they feel their body should be capable of doing--simple things--that are still somehow not possible.  Arthritic hands that cannot open a bottle; knees giving out crossing the living room; waking up to find that it already too late to make it to the bathroom; all of these force a cumulative change in how an individual can look at themselves and there is some inherent grief to it.  

I carry a lot of that conditioning still.  I had multiple years of it.  I have many good reasons to not trust my body.  I adjusted to those expectations.  I have to remind myself that the conditioning and habits I needed to survive are not necessarily the skills I will always need.  I mentioned offhandedly at work the other day that it was a matter of time before I was hospitalized again--with any luck, not for many years--and watched as they thought about how to react to that.  It's a bald truth, but a truth nonetheless.  I've had a chronic illness for twenty-three years at this point; I know a few things deep in my bones because they have been etched in.  

Ten years later, ten years from the pinnacle event, I am starting to get to a point where I can take some things for granted again.  And it is an odd thing.  There is a permanent hole in my abdominal wall, and yet there are still some things that I can take for granted.  I am trying to unlearn.  

The first time I worked three twelve-hour shifts in a row, I was low-key terrified.  I was prepared to break in some ways, to need a full X days to recover.  I did need some recovery, but not the kind of lingering recovery that I used to need, where borrowing against tomorrow's energy required literal weeks of recovery.  There are a number of ways that I am in the best shape of my life.  

So lately, I've been trying indoor rock climbing.  I have never done a pull-up in my life; I have zero reason to think I could be good at this.  However, not all elements of rock climbing are brute force--there are places to finesse and trust your toes more than we would think is normal.  It does not have to look like a ladder to be something that has enough elements to ascend thirty, forty, fifty feet up a wall.  

Raring to go!

Raring to...

Erm...
Ah, beans.

And this is why it has been so freeing.  I don't know what my body can or cannot do in this situation, so I have to let it show me.  I have the delight of being able to surprise myself while simultaneously not feeling defeated when I tumble off:  it's a learning space.  It's a new adventure.  I am genuinely frightened up in the air.  It's a new space to explore trusting my body without preconceived notions.  As such, it is allowing me to find spaces to better listen to my body again.  I am learning how to push without overstretching.  I am learning how to be mindful in hearing what my body needs in this environment and that then reminds me that it is okay to ask in other spaces.  Because I am pausing to listen again.  Because I am finding safe ways to ask and engage.  

To ask, to listen, and to honor the answer.  To transpose that experience into other places where I similarly need to check in with my body.  To honor the gut as a source of insight rather than an albatross; at best I would see my gut feelings as good advice from an untrustworthy source.  

Fledgling Nurse, Part 12: Patient Cares v Patient Tasks

I would not claim to know every nurse's reason for getting into the field.  However, I have taken a small sampling and found some similar themes that include (but are not limited to) the following:

• A loved one (or that individual themselves) went through a hospitalization and/or needed care at home that the individual participated in; they found that they had an affinity for it
• A notable nurse had touched their life in the past
• Biology is hella cool, man, in all its grossness
• It seemed like a good idea at the time, and now "I could never think of being anything else"
• A desire to demonstrate compassion for persons by direct care

That last one, I would say that many of us need to have this in at least some degree, whether or not it was the key driving force.  There has to be a degree of willingness to serve others, to work toward alleviating suffering where possible.  The job entails service and advocacy for others.  Sometimes that involves a bit of tough love and hard, direct questions.  Sometimes it is a painful dressing change on a wound.  Sometimes it is a nagging to get up for yet another walk.  Sometimes it's a timely delivery of pain medication.  Sometimes it is a gentle washcloth on the chin after feeding the patient.  

One of my favorite spaces, though, is when I am able to stop and listen to patients, honor their emotional processing through whatever else is going on and see them as a person.  This is not every nurse's particular desire nor skillset--some nurses prefer their patients anesthetized (e.g. surgical nurses), and there are definitely days where I see the wisdom in that.  However, there are days where that space simply is not possible.  This can be for a number of reasons:  

• The patient and I have some kind of communication barrier, most frequently because they are hard of hearing but sometimes language (the translation tablets are supposed to be used primarily for communication related to their care specifically)
• The patient does not feel like talking
• The patient has their own visitor(s) or is otherwise already engaged
• The patient is confused and/or with low memory, participating in their own world only

The most common reason, though, is that I simply do not have time.  From eight to ten in the morning is an absolute flurry of activity.  I have received report from the night nurse, gathering my bearings on these patients, introducing myself, and setting goals with them for the day while also performing an initial assessment on them to form some of my own conclusions; then I am checking, retrieving from the correct location, preparing, all of their medications for five separate patients (one after the other, since all at once is a logistical nightmare, particularly with some patients that need pills crushed, swallowed one at a time, cross-checked with another nurse, etc.).  At the same time, I'm getting calls from lab, physical therapy, occupational therapy, respiratory therapy, patient family members, case management, social work, my tech, physicians, and, of course, the patients themselves needing to go to the bathroom or other morning routine elements.  

In the rest of the day, I am also expected to round on my patients every other hour (their tech on the other hours), turn patients that need turned, administer timely medications, troubleshoot and/or start new IVs, discharge appropriate patients (calling nursing homes or home health for the handoff, sometimes scheduling appointments that haven't already been made), admit new patients, teach patients about their care, perform dressing changes, notify the physician of any major concerns, and respond to any other issues in the day.  

My internal self in the morning med pass

Oh, and document it all.  

In other words, my goal might be to be with the patient as a person, but sometimes my reality is that I have a series of tasks I have to perform with that patient, and this may be all of the space I have available to them.  I leave those days feeling a level of frustration, that I was so busy performing patient cares that I may not have been able to care for the patient.  

I don't like it when my patient becomes a list of tasks rather than a person, but, again, sometimes that is all the space there is, particularly when other patients on my load simply need more, in one way or another.  There are times, though, when a patient is a list of tasks partly to protect myself--perhaps they are lashing out against their situation by making snide remarks to staff members:  I will minimize my time in those spaces, clustering my obligations together and perform the bare minimum of interaction. I am not neglecting them by setting a boundary, as their tasks are still addressed, but it feels different.  It's an interesting cognitive dissonance, to know that I am caring for people by actions even if I am not engaging with them emotionally.  I do not need to be "friends" with a patient in order to feel fulfilled by the day.  I can know that I am advocating them while I'm not being present in the room; I can know that I'm simply a part of the "holding pattern" before other decisions are finalized and know that this effort is not strictly needed (I cannot make insurance approve pieces any faster).  

In the end, it is all a balance of resources.  What emotional space I have to offer depends on how much has been used toward all of the task elements that must be completed.  I prefer to have the time to see to their emotional needs, but it cannot be at the compromise of someone else's safety needs.  What's left is to make peace with that.

Peterson Family Update, #94038 Phi

 It's that time again!

• Whelp, I have gotten my second COVID booster now for a couple weeks now.  I qualify under the immunocompromised stipulations.  
• Had another successful trip around the sun, and I celebrated my birthday with a few buddies going axe throwing, doing an escape room, and screaming at a videogame.  It was brilliant fun.
• I have more than six months of a nurse, now, under my belt!  Holy crow, I have learned so much since January, let alone since August.  At this point, I've even had my first review with my manager, which included some good discussion.  I have a lot of space to grow; I'm eager to see it.  
• Had a family vacation this last week!  We gently tumbled into some tourist traps, properly ooh-ed and ahh-ed at the Smokies, went to Dollywood, and got to play some games together as a family.  

Wonderworks, and all the 
ridiculousness therein

The view from the Ferris Wheel at the Island.
There's actual TOPOGRAPHY out there.

Andy had to get creative around some 
obstacles at minigolf

Would just like to point out that I managed
to be the top-scoring player in our round of 
lasertag...because I camped and sniped people. 
Literally have no idea what 3/4s of the place looked like

The Pirate's Voyage dinner show was a lot of fun,
with some wonderful surprises

• Our household was unaware of quite how many songs we sang to/about Luna until we were away for her for a few days.  We knew it was quite a number, but, oof, it was revealing when we started one, made eye contact with another member and sighed.  There were zoomies when we came home, so I like to think it was mutual.  (Thank you again, Anthony, for watching her!)
• One of the tourist traps was a Jurassic Park boat ride that Mother and I peeled off to while the rest of the group made toward the go-karts, knowing full-well that it was going to be silly.  However, I did not put two and two together to realize that the whole thing would be in the dark.  With some things roaring and moving toward you.  Neither of us are the person you want to take with you into the haunted house as your "protector," to say the least, which meant there were a couple of points of "No, don't you pop out at us!" and some legitimate yelping.  I guess I thought there would be more "nice" dinosaurs before the chaos inevitably happened.  Still, the right kind of silly.
• We have a few coaster enthusiasts in our group and Dollywood had some real zingers.  My favorite part of any coaster is good airtime, when you crest a hill and float for a moment or two.  Lightning Rod was our first coaster of the day, and it was definitely one of the top coasters I've ever been on.  Brilliant airtime, loads of fun.  
• Back at the Vrbo, we played Euchre, Pinochle, variants of Uno, Trash Pandas, and Telestrations.  The latter always dissolves into a particular brand of chaos, even when we're not trying to actively sabotage each other.  For example, I failed to read "Raisin Bran Cereal" correctly and interpreted it as "Russia Brand Cereal," hence the drawing of Soviet Flakes.  Kitty, however, delights in deliberate but tangentially related sabotage, which is why she is labeled "the black hole."  
• I tried to count how many times Andy was in conversation with strangers about the Rivian, and I lost count somewhere.  One notable moment had a dude pulling next to us at a light and yelling "what the fuck is that?" over their toddler and replying "It's badass!" after the name/brief explanation.  Tutti definitely pulled a LOT of gazes when we drove by the old truck expo, with all of these vintage Fords and Chevy's out in the lot.  Andy has a lot of fun with it--really, Rivian could not ask for a better ambassador.  He held court in more than one parking lot, certainly.  
• Speaking of the truck, Andy and Mike had the chance to take Tutti through an off-roading class and course.  They have a much more tuned sense of the truck's dimensions after that adventure, for some reason, as well as some good stories.  
• I have another couple of days at home before going into three days in a row at work, which will include some recalibrating back to some degree of routine.  I've also been putting off a couple of things until after vacation, which include a new workout system called TapFit as well as some rock climbing classes.  For TapFit, I already do a fair bit of Zumba and the like, but I wanted to shake things up a bit there, try a new style of something.  The community on the surface seems more focused on the weight loss angle, though the self-paced choreography basics are intriguing me in the right ways, for the first couple days in at least.  
• I am already poking at what our next adventure might be.  I had forgotten how much I appreciate a good road trip but for these last few destinations (Minneapolis, the Wisconsin Dells, and Pigeon Forge) I daresay the company at our destination had something to do with it.  
• Andy has already planted another tree and at least a dozen small plants this season.  I will have to make a cleaner budget line for gardening supplies for future months, but I comfort myself in knowing that he'll run out of space EVENTUALLY...even though I know that there will be some significant new landscape features.  Even over the sound of my wallet screaming, I see how much joy it brings him, and I don't mind seeing the flowers nor would I stop myself from enjoying the black cherry tomatoes right off the vine.  While I limit my involvement mostly to engender Andy's creativity and vision (following direction but seldom giving it), I also acknowledge my poor record for keeping plants alive, taking a backseat to minimize exposure of my herbicidal aura to the area, if you will.  
• I am remembering from last summer that not only should I be wearing sunscreen because I have had a basal cell carcinoma dug out of my shoulder, but I am also basically mildly allergic to the sun, too.  Post-vacation, I have a few spots on my arms that will need some help and time to go away, maybe some prednisone again.  I'm considering what kind of light, full-sleeved options I want to employ so that I am not permanently painted white with SPF WowYou'reFlourescent to take Luna on a walk (yes, it has been that bad).  
• Andy and I hit our ten-year anniversary on May 26th!  He's still my favorite and brings color into my life.  I look forward to our adventures to come.  
• And speaking of, happy early birthday to Andy!  I predict there will be more plants bought as part of the celebrating.  

Much love, all.

Intersections of Life

I've had these same thoughts before and yet I feel the urgency to speak about them again, namely the element of "sonder," that particularly realization that those we interact with live a life that is as vast and complicated as one's own.  The hospital has cross sections of life that all manage to intersect in some fascinating ways.  I mean, I know that this is technically true everywhere, but it seems more apparent in this environment as hospitalizations and new diagnoses are significant turning points for many people.  So, not only are lives happening, they are changing drastically and with all the big emotions that implies which is now suddenly put into context against what they (formally) knew as normal.  Weddings, graduations, new jobs, new family members, and many other significant life events are happening, even as a loved one from another family is dying in one of our hospice rooms.  

One patient is worried about whether their professors will be flexible with their due dates while they are hospitalized.  Another is concerned if they are going to lose their job, which is the only reason they have health insurance.  Another still is contemplating how to explain to their aging parent that their needs are beyond their ability to care for them alone and they need to consider what other options are there.  Another still will be following up outpatient now that they've stabilized in order to find out what their new chronic illness actually is and what that will mean for themselves and those that love them.  A group from another family in hospice is so busy "helping" that they somehow fail to be present in the moment with the patient in their final hours.  Another knows that their family member does best when they have a familiar face around to reorient them but also cannot get enough time off of work to be present.  Another family member is completely fed up having to pick up this patient for the umpteenth time from the hospital, wishing that the patient may make some more positive changes this time.  Another patient only let the problem get this bad because they could not afford anything preventative--the emergency room and admission were the only parts of their care covered.  

Folks wander up to the desk asking for a cup of ice completely oblivious to what is happening two rooms over.  In fact, patients and their families can be so intwined in their own situation that they seem to forget anyone else is here.  These seems most true for hospice situations, particularly if the change over to hospice was sudden.  Their understanding of a world larger than themselves simply vanishes.  Even in less extreme circumstances, I cannot count how many times someone comes to the front desk and says something like "my mother needs to go to the bathroom" or some other similar request (a cup of ice, pain medicine, has a question, etc).  I have no idea who they are, let alone who their mother is.  As such, there are many points where I have to ask "who is your mother?" and they might tell me a name, but I have to clarify still "what room are they in?" because I will not be able to find someone simply based on their name without cross-checking things because even the rooms do get switched from time to time.  Additionally, I won't magically know important context to their case nor specific bathrooming needs because I'm wearing navy blue scrubs--chances are, I'll need to find their nurse or tech.  I will know many specifics about the patients I am assigned that day; I will not have such intimate knowledge of the entire set of thirty patients possible on our floor.  Maybe I should try to look less approachable.  Yet the point remains:  I don't think that they're being egotistical on purpose, assuming that I know who they are because they are the only ones in the hospital but more because they are so focused on this pivotal moment that they do temporarily forget that there is anyone else outside of them.  

Yet in the meanwhile, the nurses and techs and doctors are discussing the new hospital visitor policy, talking about the asshat who cut them off on the way to work, on a house hunt, wading through family drama, trying to find someone to cover them to go to their child's game that week, planning their garden for their day off, managing their own appointments and conditions, thinking about their next vacation, considering picking up additional time to pay for said vacation, sorting out how to get their car back from the shop with their work schedule, and a thousand other things. 

I don't need the patients to pull themselves out of that self-centeredness, except for small moments at a time.  In fact, I would encourage folks to stay in a place where they can process and feel what they need to that they might be otherwise ignoring for at least doses at a time.  However, I do need enough awareness to firstly acknowledge that I have other places I also have to be and as such I am not slow to reply for any vicious reasons.  I am a side character in their event.  And while I am providing a service, I am also an individual with my own goals, needs, and limitations.  

All colliding and intersecting, requiring uncomfortable pauses and emotional processing while, somehow, the world keeps turning outside of the hospital walls.  Time moves differently in our hallways; time moves with portent and either with startling speed or as a maddening crawl.  Yet, it moves forward all the same.  

Melvin & Me, Part 36: Meds Day

At this point in my Crohn's journey, we've hit a good stride and pattern for treatment.  In other words, the things that I do to maintain are firmly into routine by this point.  This emphatically does not mean that there are not ways that my condition is present in my day-to-day life, but instead it means that these interruptions have become normalized.  This difference is important--my chronic illness is never "over" and is always at least quietly constant in my life.  Quiet, but never forgotten.  

Melvin, certainly, is the broadest change, needing to plan and react to my ostomy's needs in a day, over the week, over a trip, etc.  I have routine doctors' appointments and bloodwork and a colonoscopy every three years.  I take daily medications and have done so since I was twelve.  However, one of the largest parts of my care plan is a medication infusion that I get every eight weeks.  I tend to call it "going in for scheduled maintenance."  

This entails feeling a little run-down a few days before the appointment itself.  When I'm honest with myself, I'm not fully sure whether this is because I'm truly physically more fatigued OR if I am more receptive to a particular kind of tired that is usually ignored.  I allow myself to check-in with my body on a deeper level.  The whole day, even as there are other tasks, centers around self-compassion to my body.  

I practice self-accompaniment on these days.  I am intentionally with myself.  I sympathize with my own annoyance that I have to interrupt my schedule to sit at my doctor's office for an hour and forty-five minutes and get poked for yet another IV.  I resonate with past moments of myself trying to schedule and arrange the next infusion around the rest of my schedule, now that I have been getting infusions of some kind for over ten years at this point.  I focus on my resignation toward this interruption, acknowledging its necessity.  I consider my gratitude that I have insurance to pay for the $15K bill every eight weeks, that I am no longer on the medication that takes four hours to infuse, and most importantly that this medication regime is working.  

In other words, there is grief, in all its multilayered glory.  Infusion days become their own ritual, a space where I am already forced to physically tend to the realities of my condition so I choose to also make it a place to emotionally acknowledge them as well.  That means that one way or another, I am pretty tired by the end of the day, either because the infused medication is settling in or because I have been working internally all the same.  

And then in another eight weeks it's time to do it again.

Giving Up

I remember reading the short introduction to the end-of-life chapter in one of my textbooks.  The discussion highlighted how abrupt the shift can be from the mindset of "do everything possible to keep this person alive," over to "ensure that the person is comfortable and be present for the family."  Even the verbiage around this decision point can get tricky and seems inherently negative, talking about "giving up" or "throwing in the towel."  

"Giving up" can be a virtue.  Realistically looking at a situation and understanding that some of the measures available would only buy a tiny bit of time for a significant amount of suffering, some of these are no longer a kindness.  One particular family comes to mind, that they agreed to a temporary dialysis catheter, in the vein of "not wanting to give up," and added a new degree of misery to their situation; the patient was placed on hospice a day or so later and passed soon after that.  I have seen many more languish for multiple days because the patient insisted they were "going to get better," and I was no longer able to discern whether this was performative for me, their family, or themselves.  

Of course, if the line were clear we would not have so much anxiety around it.  The hard part is the finality, where tears blur even the clearest situations.  But as soon as the switch is flipped from "what measures can we take?" over to "how can we make them at ease?", I feel a particular relief in the air.  The urgency transitions to a new energy of preparation, a darker kind of anticipation.  And in myself, I feel a significant shift in how I think of that patient in that room.  I am more sensitive to their choices, as in I will not try to encourage or persuade a specific course of action--if the person does not feel like eating, then they don't have to, as I am no longer focused on the longer outcome; if they want to stay in the same position and not be turned, I can honor that without being considered negligent.  How I include the family also changes, inviting them to reminisce and tell me about their loved one as they lived--to see them through their family's eyes--particularly when it seems they need a breath of air in their grieving process.  

There is relief in making the decision.  There is still a degree of dread in place of outright fear, yet the tempo has slowed.  As a nurse, there is less to do physically in some ways, but I have the opportunity to engage emotionally, to linger in those spaces of human connection with a broader invitation than I might have otherwise.  

Not everyone makes that transition well, particularly when the goal has been to fight, fight, fight for so long.  And I think that this is in part due to our verbiage:  there is an implication when someone has "given up" or "lost the fight" that maybe if only they had fought harder, it would not have ended this way.  There is a shadow of blame that follows the words in a way that can hurt people.  

Sometimes, there is no "winning."  There's also the concept of the sunk cost fallacy, that basically means that there is a tendency to stay in a losing situation because so much time and resources have been spent toward it already.  It's harder to leave the longer one has invested, which can add context to a lot of abusive relationships.  Similarly, I have seen patients that have tried all the things to a degree that is no longer logical on an outside perspective.  And yet.  

Sometimes there is a "better" even if there is no "winning."  It takes a certain degree of energy to detach oneself and look at the whole perspective, to weigh difficult factors together.  I feel, though, that how we refer to it in the context of our healthcare, I want to make an active shift away from battles and wars and fighting.  No one is keeping score.  The blame elements add unnecessary hurt, complicate the grief, exacerbate guilt.  Someone is not lesser for determining that they have a different threshold that what people expect of them.  I work to morph my expression of kindness depending on what the patient has outlined, that they want a specific quality of life or a specific quality of comfort--they can be mutually exclusive or they can cohabitate, depending on the other factors.  Sometimes people cannot be honest with themselves about their goals, too, which makes all else much trickier, as I weigh their verbal and nonverbal messages.  

My job is to coach based on those goals, to advise based on their feedback and my clinical expertise.  I can outline options, fulfill agreed upon interventions, teach, but I cannot make decisions for the patient--I have seen many, many self-destructive choices and will see many more.  Yet when we reach a crossroads, I must find a way to meet the conversation with a certain mixture of honesty tempered with gentleness.  A conversation, seems to me, is a better framing than a battle.  

Fledgling Nurse, Part 11: Patient Teamwork

I have catchphrases, certain ways that I'm falling into a pattern in how I talk about things at work.  As I am repeating back to a patient what they have asked me to bring them from the supply room, I'll ask, "What else can I add to my shopping list?"  When appropriate, I tend to ask as part of my morning assessment of the patient "what else can I have on my radar for you?" as a means to open the door for their particular goals.  I like to ask my peers as they're walking by, "are we having fun yet?" which is met with a variety of replies, all of which are interesting.  When a patient tells me that they're in pain, I'll say "I'll see what I have on tap for you," which can get awkward when I have a patient in with alcohol withdrawal--yes, I'm trying to phase this one out, but it has taken quite an insidious root.  

I do these for multiple reasons.  

• First and foremost, I have my own way of talking that I'm a bit set it--I won't deny that this is my script in those places. 
• They can help establish rapport, set a tone that is approachable and welcoming so that we might be in a strong, therapeutic relationship.
• They're also a bit of a litmus test.  I can be a fast talker, and I know I have a compendium of weird idioms--if I am met with confusion on these, I back down a bit on the strange phrasings, speaking a bit more directly and with less, well, personality.  If English is a second language or our cultural perspectives are different or they have some kind of medical reason to not keep up with me, I now have an idea that I need to change my speech to be clear, slower, simplified, and/or without any non-standard added frill.  
• They're definitely a litmus test to mood.  If I get a smile or a chuckle or even a snarky reply, I know that we can joke with each other a bit.  A sigh in response, (non-friendly) rolling of eyes, and I can shift to a more sterile sort of professional or otherwise gentle prod for further insight to their low mood.  
• It makes me smile, to and for myself.  

I want to especially highlight "therapeutic relationship."  I need honesty between my patient and myself, firstly that they can tell me information important to their care and that they know in return that I will follow through on what I tell them I will do.  This trust is vital.  

There is a bit of power imbalance.  On the one hand, the patient is a client, the person being served; on the other hand, I have the connections between them and medication, advocacy with their doctor, etc.  As such, boundaries are imperative as well.  A patient that tries to dictate everything I will or will not do and when I will do it impedes their own care, specifically by not allowing me to exercise my clinical judgement and experience.  I want patients to have self-advocacy--I encourage it--and in the same breath I also have my own timings and needs and limitations, such as caring for other patients.    

From my experience as a patient with chronic illness and now as a nurse, the best situation is a collaboration between the healthcare team and the patient.  The patient is the one that is suffering, that literally has the most to gain or lose--they should be involved in their own decisions (where they are legally and practically able to).  However, that individual has called upon a team of experts in order to hear that counsel, to seek that guidance.  As a patient, I dug into my case, sought very specifically to understand my options and the reasons behind different treatments:  I recognize that not everyone is as interested in some of the specific mechanisms of action behind their medications, but I am disheartened when I find patients cannot even tell me what condition X medication is for or even the name of their condition they've had for years.  

The patient is part of the team.  The healthcare providers are recommending a course of action.  Questions and ideas are shared.  No side is a complete dictatorship.  

The patient is a part of the team.  

I have difficulty working with patients that are not interested in their part of the team.  On the outside, it seems that they expect wellness to simply happen to them, acting as though being in the hospital will magically make them back to better than they were before once the right magic elixir comes along.  While finding the right medication(s) is a brilliant help, there is still work to do:  working with physical therapy to prevent deconditioning, dietary changes, follow-up appointments, walking (to the bathroom, in the hallway, etc.) or some level of activity, at least moving in the bed to prevent pressure ulcers.  Truth:  some people still leave the hospital feeling crummy, but they are stable enough to continue healing at home.  At the VERY least, acknowledging that this is not a five-star resort so, no, there is nothing I can do about the quality of the food nor will I tell lab to stop collecting blood we need for additional testing nor will I ignore hospital safety protocols because they are inconvenient or stop muting the TV when we need to have important conversations.  I have had a few patients by this point, now, that fall into this group, that are grumpy about needing to be in the hospital (understandable) but then cross a line by taking that grumpiness out on staff.  Sometimes this then translates to refusing to participate in their own care seemingly out of spite.  

The specific patients I'm thinking of, I have heard them say that they want to get better, but their actions tell me otherwise.  I feel like I'm actively being lied to and then held responsible for withholding the magic wand from them, that I am culpable for their unrealistic expectations.  I've given discharge teaching and been told directly "yeah, I'm not doing that," and I appreciate and am simultaneously exasperated by their candor.  I feel a very specific frustration in these places because I have fought for so very long and fervently for my own current degree of health.  

The patient is part of the team.  The patient should not be all of the team, but the patient should not be physically carried through every metaphorical hoop that they could walk through.  Yes, it's exhausting to be sick--I know this viscerally and fully--yet that does not excuse the responsibility.  It's okay to rest; it's okay to have moments of frustration and grief; it's okay to ask for others to help advocate in the spaces you cannot.  To say that they're not giving up with one side of their mouth and then refuse all interventions, again, I simply do not believe what they are saying.  There are definitely times where the right thing to do is wait, but waiting is not a passive thing.  And doing nothing is still a choice.  

When I encounter these patients, I have to pause to remind myself that I cannot force them to choose to help themselves.  It is also not my job to carry them (except for a few places where it literally is).  I will coach and guide and cheer.  I can walk alongside and nudge people directly, where it seems appropriate to do so.  And I rejoice in the interest of anyone that wants to understand more about their condition, yes, even when it leads to an avalanche of questions.  In other words, I will support a team with the patient and their caregivers.  I cannot, however, be the knight slaying the dragon for a kingdom that doesn't care that it's burning, not when I've been handing out fire extinguishers that are sitting unused by the door.  

Pause.  Breathe.  Let it go.  Move my energy to the next patient.