Tag Archives: pain

Glossary for pain & suffering (a beginning)

Chronic Illness,

Before my dad was officially diagnosed with ALS, the working theory for his abrupt weight loss was digestive: in short, he wasn’t eating enough calories. This explanation was elevated in the assessment process because one of the words he used to describe how he felt was “nauseous.” It wasn’t until I was with him over several meal attempts that I realized we needed to examine that word more closely.

To me, nauseous meant an unsettled feeling in the stomach and a pronounced urgency to throw up; I associated it with a franticness of wanting to find some where to vomit, not on myself. But my dad wasn’t doing that — he would say he was nauseous and then lie down. I believed him that his body was giving him cues and that he was acting on those with personal expertise, and I wondered if there might be other words that better matched his experience. While he rested, I did a search on synonyms.

Screenshot of a Google search for “nausea synonyms” identified: sickness, biliousness, queasiness, vomiting, retching, gagging, travel-sickness, seasickness, carsickness, airsickness, motion sickness. These were said to be “From Oxford Languages”

The two that jumped out at me were biliousness and queasiness; ironically, since these were both in a paler font. Others were associated with specific circumstances (various kinds of travel or motion sickness), which also gave us the idea of making comparisons between how he felt at that time in references to past situations of being unwell.

When we changed the conversation to add specificity to his wording and detailed comparison and lack of similarity from other circumstances, it started to change the direction of our thinking. Unfortunately, it took a little longer for his familiar medical team. They weren’t ready to rule out digestive concerns, and it took my dad’s sense of himself + his understanding of his rate of change to compel a different team into re-examining the available evidence. I also believe that another factor was the urgency expressed by my cousin to the ER doctor in the hall, making it profanely clear that her background as a nurse and knowing my dad was a clanging alarm bell that she intended to have heard.

I believe that the words we use matter. What I don’t know is which words most accurately convey information which can be translated when it is needed most. Sometimes words chosen can light the path to a solution, and sometimes it is a misdirect that increases pain and suffering.

Regina Fink, RN, PhD, AOCN has studied pain assessment, and has compiled the WILDA approach:

  • Words to describe pain
  • Intensity (0 to 10)
  • Location
  • Duration
  • Aggravating and Alleviating

Dr. Fink provides a detailed and helpful analysis of each component of the in the 2000 Baylor University Medical Center Proceedings titled, Pain assessment: the cornerstone to optimal pain management. It is well worth reading and I highly recommend it. I have strong opinions about the use of intensity ranges as the sole quantifier of pain/concern which I have gone into detail about elsewhere. For my purpose presently, I am focusing on the first section she discussed relative to words to describe pain — she goes on to explain how these lend insight in ways that are associated with nerves, muscles, and organs:

Word bank of terms to describe physical pain which includes descriptions of neuropathic discomfort, somatic, and visceral. Each category have different ways they locate and behave in the body — such as specific to one spot or across a general area.

In terms of health literacy, I feel like these are the seeds of a glossary we should be talking about, at a minimum, when relaying our experiences of pain to medical teams. These also are critical to be teaching our kids relationships with their sensations so that they are able to interact with confidence and autonomy. A shared vocabulary is critical for a culture of informed consent.

In talking with a dear friend about the WILDA approach, she asked two incredibly important questions:

  • What about non-physical pain? The WILDA vocabulary do not apply well to mental, emotional, social or spiritual/existential pain. We agree that it is misguided to conceptualize these as exclusive or can be distinguished from one another.
  • How do we move beyond a comparison of pain against NO-pain? If zero discomfort is the standard of ‘normal,’ both she and I are immediately out of the conversation because that does not happen for either of us.

I don’t have an answer to these questions even just for myself, but I do know that I benefit from conversations about it and that sometimes having a starting place to bounce off of helps advance the cause.

A book that has been helpful as a parent is Maria Lamia, PhD’s Understanding MYSELF: A kid’s guide to intense emotions and strong feelings (2011).

Dr. Lamia’s review gives broad descriptions of emotional landscapes and provides key words that may be associated with these. Each chapter includes information in straightforward language, first-person kid quotes, a short survey of self-evaluation, resources for building resilience, and some research-based science. There’s part of me that experiences my pained and suffering Self as childlike…that I do best in understanding, relating and creating spaces for healing when I can hold myself gently in that mindset.

I reviewed Dr. Lamia’s vocabulary for the areas of Feeling Self-Conscious (which includes embarrassment, guilt, shame, and pride), Feeling Threatened (as with anxiety, fear, and disgust), and Feeling Gloomy (loneliness, sadness, and grief).

Note: I kept the terms for Pride in the table, but I tend to associate that as a positive and I am not sure how that would correspond to medical/mental health teams at least in the same way as the other feelings and emotions.

A table of vocabulary grouped by Mary C. Lamia (2011) categories in columns of Feeling Self-Conscious, Feeling Threatened, and Feeling Gloomy. The second row includes additional words from my own experience with feelings, social implications, and thought energy flows I associate with each column.

With my kids, I can just turn to the main chapter grouping and have them review the words — typically, they find that there are a few that ‘jump out at them’ almost as if they were written in a special font at that moment. Now that they are teens, we can talk more about the nature of their thinking — are thoughts like ping-pong balls, bouncing out of control? How about circling around or spiraling outward from a central, negative idea? Maybe just stuck and unmoving?

I say this is something I do with my kids, which it is, but it is as much a process I am trying to learn myself as it is something I hope to impart as a parent.

Two photos of the same tree. On the left, it appears round and full. On the right, it is evident that the trunk and crown are actually U-shaped with an enormous gap in the leaves for where it has been pruned back for power lines.

So that’s where I am with this, fully aware that this is not a whole picture.

I do not yet have vocabulary for really any social or spiritual/existential pain — although I suspect there is some overlap within aching loss and/or feelings of being outside of a higher order of belonging.

I also know that there are cultural differences in the experience of word meaning particularly as it relates to co-constructed understanding as with exchanges of information. As one example, being white may have had an influence on my cousin’s use of profanity as being heard as emphatic and passionate rather than with implicit biases of being unsophisticated, threatening, or disrespectful. Conversations among speakers of the same primary language undoubtedly go more smoothly than when there is a translation involved — particularly when some languages may not share common meaning in expression or tone. The very real risk is informed consent may not be achieved, and in medical-health situations that rapidly becomes dangerous.

I want to do better: I want to learn more. I want this to be just a beginning.

[End blip.]

Where do “strength” and “confidence” go?

Chronic Illness, ,

For awhile now, I have been working to refine my sense of physical and emotional suffering, which I termed globally as pain/concern. More recently I have been trying to wrap my thinking around a different combination of physical and mental complications. My assessment of whether or not I can do something, am successfully doing it or need to adjust immediately, or believe I cannot do it and will not even try includes: anticipating pain or task failure, in-the-moment pain or mistakes, and backlash either as regret, ache, or a mess that shows up later. It’s a heady mix of questioning strength and confidence.

On the first warm day of 2014, I tried to put up the porch table umbrella so that we could eat lunch outside. It slipped & the angle shattered the table into a gazillion shards of glass which completely covered the porch + fell into the rocks/grass below.

What I remember most clearly about the moments immediately after when I had destroyed our table, was that it had not in any way occurred to me that I couldn’t do this on my own. I had retrieved the umbrella from the shed, carried it across the yard + up the porch steps, held it over the height of the table to position it in the center…

I had done this before — it was not a new task to me although it was typically only once in Spring install and one-time removal in Fall. I don’t think I knew the table was glass. It never occurred to me that it could completely crumble into a gazillion sharp edged pieces…

Also, I was in somewhat of a hurry. Food was in some stage of being prepared, the 8-year-old twins were ready to eat. I couldn’t let them anywhere near this. I didn’t want anyone else to have to clean up this catastrophe. I kept imagining bloody footprints from yard creatures getting cut by my gross err in judgment.

Worse still, I was not physically capable of cleaning it all up. I became dehydrated and light-headed, the glass was too heavy, the sunshine blazing. I was so deeply sad that I had to give it over to my husband. It all felt awful.

In August of 2019, I was picking my teens up from a summer art camp, and completely missed a step at the front door of the building. That fall lead to a broken wrist, with a radial plating system surgically implanted.

In the moment, I did not see the fall at all. I know I witnessed it at a subconscious level because it was returned to me in dreams later. Had I noticed the step, I am sure I could have been both physically strong and entirely confident = successfully completed the act without injury. But that really does not matter because that’s not at all what happened.

Sitting on my couch right now, I cringe and fix my jaw at the memory of it even still. My sense that I will see the potential problems feels pretty unreliable. Where do strength and confidence go?

If these kinds of categories were to get added to the Tell Me About Your Pain/Concern, how would I quantify anticipatory pain/worry? I have used the terms “ominous” and “dread” to physicians and physical therapists; as in, “I have an ominous sense that I am going to have severe heart burn from my potassium supplements, and I have to remind myself to relax or it is more likely to get stuck in the tension of my throat.” Or, “I know I am carrying myself very cautiously on walks because of dread that I may stumble.” I know that this is primarily a mental-emotional issue, and it matters because it directly influences how I act in the world even for the most basic activities of day-to-day living.

Reviews of ability to complete Activities of Daily Living (ADLs) that I have often seen relied on simple scoring: 2 = could do independently, 1 = could do with assistance, 0 = could not do. While this is easy to compute an overall tally, it may not adequately capture skill sets and the mental-emotional processes associated.

In 2019 when my Dad was in rapid progressive decline with ALS, I noticed trends which were both physical and mental-emotional in him (it’s easier to see such matters in other people than I tend to in myself). There was almost nothing he could do with complete autonomy and no modifications; but sometimes it was my sense that he answered according to what he wished were the case or based on how he had done the last time he’d tried even if that was awhile ago. Together we came up with a more representative set of characterizations:

5 = ABLE TO DO without apprehension or concern (e.g., not afraid of pain, falling, etc.): If he was already seated or lying down, he could use his telephone for brief calls.

4 = Able to do WITH CAUTION and CARE (that is, some discomfort likely such as strain or queasiness, may require pacing or preparation to complete). He could complete oral care tasks from a bathroom seat. He could consume protein drinks by straw. He had prepared his tax filing documents just before he started struggling more prominently, so in that sense he was well positioned with his finances.

3 = Able to do ONLY with strategizing ahead of time to break task into level 4 component steps; “warning” discomfort expected; must manage remaining strength and energy. In terms of managing medications with respect to dosages and times, this was probably at a 5; however, actually taking pills required numerous steps by others (assembling, crushing to powder, mixing in with applesauce or pudding), and also himself (remembering safe swallow techniques, pacing energy consumption for sitting up, etc.)

2 = ONLY able to do acknowledging IT WILL BE UNCOMFORTABLE + depleting. Pain + queasiness present at distracting but manageable levels. Energy depleting. Weakness is distracting. Walking with a physical therapist was dreaded even when at an emotional level he valued the concept; transferring into and out of the wheelchair.

1 = MINIMALLY able to do; SIGNIFICANT CONCERN: Toileting was a tremendous issue.

0 = UNABLE to do; UNIMAGINABLE: the idea of walking down more than 3 steps, doing laundry, and driving were all extremely complicated physically and cognitively, all bore very high probability for serious injury to the point it really wasn’t worth debating.

There are a number of standard ADL lists that I did not include in this because they weren’t relevant to my Dad’s life at that time — cooking and housework were not part of his daily life.

As I reflect on all of this now, I can see how these rankings incorporate both

  • the physical demands of the task, which includes capacity, strength, stamina, persistence and
  • a sensibility of prognosis: based on (recent) past experiences, what confidence do I have that I can do this successfully.

Said differently, how a person gauges across both of these that they can start, do, and complete something without needing someone else, and without having an accident which makes a bigger problem as either a mess or an added injury.

For as much as I dislike the anxiety + self-doubt of anticipating pain or task failure ahead of an event, the other end of this gamut is achy backlash, regret hangover, or aftershock. It is nerve pain that feels EXACTLY like a bee sting when I am brushing my teeth at the end of the night, knowing with certainty that I have not been stung but rather this is a residual complaint from an aggravation I did not notice at all in the moment it occurred. It is waking up the next day unable to turn to the left after carrying heavy groceries upstairs (maybe that’s what it was?). It is overwhelming guilt that maybe I will not go sledding with my kids next time because this time many muscles and joints hurt so, so badly by dinnertime. This may be the most debilitating of pain/concern because it lands so deeply in my ocean of shame. It is in these moments where my sense of myself — my personal metric of strength and confidence — is most challenged. Activities that do not come with a delayed pain/concern do not register in my memory. As a result, they contribute a much quieter impression of what I can do successfully.

As I read over all of this, I am reminded that my attitude about developing a Tell Me About Your Pain/Concern scale has always been as a tool for communication, patient advocacy, and health literacy. I’m not developing a screening measure or billing code where scaled numbers are calculated vertically to a singular number. What I really hope for all of this is to promote a broad-based framework towards productive conversations and those get individualized (more narrow) with the follow-up questions. With this in mind, characterizations about fear and quality of life could be immediately linked with further investigation of the role of strength and confidence.

It also validates making an explicit practice of “I did that” recognition — making sure that these become part of my history of me. This could be paired with explicit practice in low-stakes tasks: identifying when I have moments of doubt, and exploring those experiences in ways that I can readily find the boundaries of my strength and confidence. I may always have <5 ratings within my activities of daily living capabilities — may those be opportunities to build, broaden, adapt, and share with my medical/health care team.

End blip.

p.s. I did that.

Distance from “functional”

Chronic Illness, , ,

For not being a particularly mathematically-minded person, I have found a surprising effectiveness for using rating scales across a range of circumstances as a way of characterizing a state of being, communicating needs, and making plans. Downloadable .pdf

Using a standard scale of 0 to 10, I wanted to expand on describing pain to include ‘concern’ (because emotional distress is valid), and how other factors influence the perception of the magnitude of a problem &/or how it is addressed.

I was working with a man dying of ALS when I first realized that the method of using 0 to 10 to describe pain was inadequate — typically, this is used to say that 0 = no pain, and 10 is the worst pain you personally have ever felt in your life. For this man, he had chronic tooth pain and he knew there was nothing that could be done about it. As a stand-alone prompt: Does he answer the question for how he FEELS (serious pain), or is that a source of frustration since there was no relieving it? If given the opportunity to follow-up with a characterization of familiarity, fear, or expectation regarding next steps, he consistently reported that he did not want this issue to be the focus of his limited time and energy. As I began adapting this approach with myself, my family, and persons I worked with, I have been increasingly convinced that the follow-up questions are critical.

A guiding principle I try to encourage is to regard a “4” as an important opportunity of awareness. This is the point where steps need to be taken because waiting until after this will surely mean more intensive responses will be required and will take longer to have a positive effect. For example, with a headache, a 4 may mean drinking water, taking a break from technology screens, rest, and quiet. Waiting until a headache is past a 4 may well mean over the counter medication (which can take up to 45 minutes to have an effect and sometimes comes with a stomach upset), separating self from others to have dark, stillness, and silence. With emotional well-being, a 4-level of loneliness, sorrow, grief, and worry has actionable responses encouraging drinking water, connecting with trusted loved ones and conversations with counselors or mentors, spending time in relation to nature, meditation, yoga or prayer. Above a level 4 can get entangled in withdrawal, shame, resentment, depression and anxiety — these also have actionable responses, and can be compromised by related feelings of loss including of motivation or hope. Despair may well mean more precisely constructed responses with persons whose expertise is in navigating complex emotions and acquiring those appointments may take a substantial amount of (wretched) waiting time. The essential medications and therapies typically take some days to provide the necessary space for reflection and healing.

In short, it is not brave or stoic to actively not acknowledge pain/concern.

In future revisions of the chart, I may consider it more vertically, with the descriptions of the levels on one side and tiered responses on the other. Or posing an additional follow-up question, which I might characterize as “distance from functional.” As I type this, I am aware of a neck-shoulder-back pain that I woke up with. Overall, it is more of an ominous feeling of caution not to turn my head (at all), with swift and sharp pinches which stop me immediately. This is a familiar pain plus I am not afraid of it; however, I am aware that if I do not take effective steps it will be extremely difficult for me to cook dinner later (it’s my turn tonight), or even undress. Since meal preparation and clothing are basic activities of daily living (ADLs), it struck me that even a relatively minor pain/concern can have a debilitating impact on functioning. This is a different perspective on why recognizing how much of a problem a situation is becomes critical to pacing existing reserves. The increments from functioning are not necessarily of equal measure; that is, it may take awhile for a 3 to eke into a 4 but a 6 can jump to a hard 8 just because of a tense and unanticipated sneeze.

“It is not brave or stoic to actively not acknowledge pain/concern.” That’s true, but too short. a key word is “actively” because being aware of one’s own pain, concerns, and distance from functioning can be uniquely unsettling itself. Possibly because we don’t tend to talk much about this openly, it takes on a secret status and the things we don’t tell can take on a character of private disappointment all on their own. I don’t know that people intentionally choose denial. It seems more likely the default and conditioned response of being uncomfortable with notions of weakness, vulnerability, and potential to be ‘burden’.

For now, it is time for me to stop typing — I need to drink water, stretch, and find release between my shoulder blades.

End blip.

Reflecting on the expression “the treatment cannot be worse than the problem” w/i the 4+1 health questions.

Chronic Illness, COVID19, , ,
Note: Some profanity will be required.
 
Among a number of expressions that have gained prominence with COVID19 is along the lines of, “the treatment cannot be worse than the problem.” As a matter of *personal* choice, this a 100% valid decision for health care. As a matter of public policy or in the situation of someone having to make decisions on behalf of someone else, this is profoundly problematic. How you decide for yourself is totally your right, and make sure that everyone who may be involved in your care if you should ever become incapacitated knows what you want. How you decide on behalf of others should be informed by what THEY want or would want if they were able to express for themselves. This may result in conversations that are difficult, and I am very willing to support you/them in whatever ways I can.
 
I strongly believe that these conversations benefit from the structure offered by the four questions framed by Dr. Atul Gawande in “Being Mortal”, and an additional one included from Arthur Frank’s “Wounded Storyteller.” Essentially, as follows:
 
1. Do I understand what is happening?
2. What am I willing to do for a chance at staying alive?
3. What level of being alive is meaningful to me?
4. Could it get worse?
+1. If I become ill again, or when I do, how will I find ways to avoid feeling my life is diminished by illness and eventually dying?
 
Can the response be worse than the problem and still be worth pursuing? YES. I was absolutely unaware of my kidney failure until my physician had a piece of paper with numbers on it and said I had to be hospitalized immediately. The level of mindfuckery around trying to reconcile how I thought I understood my own body and how dialysis felt remains a source of intense anxiety to this day — am I as ‘well’ as I think I am, or am I actually desperately ‘sick’ on the precipice of dying in front of my family and don’t even know it? My son was uncomfortable with appendicitis, but it presented in an ‘atypical’ way which meant that he was wholly unprepared for the pain following surgery. They removed the ‘bad’ thing, so it was irreconcilable and reality- or trust-breaking for him to wake up in excruciating delirium (that passed, in time). Enduring digestive crisis with magnesium supplements, which support the health of my heart, is worth it, I think. I could go on, but it comes down to: Would I make decisions about what happens to my BodySelf for the sole reason of being a relief to others? Yes. I would endure nuisance, discomfort, boredom, loneliness, amIstillaworthyperson anxiety, and whothefuckamI pain. If you do not know from direct experience how each of those impact health care responses, you have been fortunate to avoid significant illness and perhaps should listen to many more stories from many more people before weighing in on this as a crisis for society.
 
Can the response be worse than the problem and still be worth pursuing? Well, YOU be you and tell everyone what you want for yourself. From the stance of a National and International response, we need to think carefully about what that means medically, ethically, and socially.

End blip.