Wednesday, April 27, 2016

Strategery: Finding the Breaking Point (Part 1)

I’ve been remiss in posting the past couple weeks. Mea Culpa.

In truth, there are about 15 versions of this post sitting in drafts, from different angles, with different tangents – it turns out that how I’ve been tracking activities and setting goals easily touches all aspects of the entire history of This Crazy Illness.

So the back-story is -- I've developed a system to better understand the new framework I'm living with. Unfortunately, Life isn't using a 24-hour base anymore, and even more unfortunately, I have no idea (and no-one seems able to tell me) the limits I should be working with now.

Astonishingly, exactly zero medical professionals have mentioned "pacing" to me, much less the steps to accomplish it. The closest is when someone mentions "start small -- you know, walk to the mailboxes and back, and then build from there".

And I tried that. The trouble is that both they and I have been overestimating what "small" is. I thought an hour of Senior Restorative Yoga at the Y would be a perfectly reasonable starting point. Not so much. Especially if I'm not taking into account all the other activity that happens that day and week.

And actually, anything on my feet (standing yoga, walking...) comes at a much higher cost and causes a lot of leg pain. (I still say there's a circulation issue going on....)

So after trying and failing at so many goals, I finally sat down to find the breaking point. Are these goals failing because they are too big at the moment, or is it because of everything else that is getting in the way. And exactly how much 'life' stuff has to happen each week that I need to work around.

What I wound up with is still a work in progress, but the in-progress part is actually one of its best features. Looking at it now, there's a heavy influence from both Ben Franklin and Agile Software Development, and it's basically an iterative process for narrowing in on Life.

A little more background on why I needed it... next week I'll explain the system:

- To understand my limits

I am very bad at understanding cause and effect when the effect might occur hours or days after the cause. I've always had a fuzzy sense that a big day comes at a cost from the day before and the day after. But how much of a cost. And how much is too much?

I have a terrible habit of blowing past my physical limits and winding up in trouble the next day, with all of life de-railed. I need to feel more in control of life. And that starts with knowing the size of the box I'm dealing with. The box is no longer '24 hours in a day' to fill up as I wish. Knowing the boundaries is a big step in wresting control back from This Crazy Illness.

- To plan achievable goals

More than one person has looked at the chart and worried that I might be boxing myself in, putting unnecessary limits on life, becoming too wrapped up in the details of tracking, or 'giving in'. Au Contraire.

You know what's demoralizing? Setting goals and failing at them over and over again. There are So Many things that I want to do. From big long-term accomplishments, to get-through-the-day tasks. And again, if the basic framework is no longer '24 hours minus sleep', I need to know what it is, so that I can fill it well, set good priorities, build momentum, and make progress, however small.

- To anticipate crashes before they happen

Another point to 'morale': being able to avoid crashing into a wall, sacrificing 'lost' days to something that might not have been that important, or could have been avoided.

If I can see the week ahead and see that there is a busy day full of good things that will put me over the limit, I'm able to choose for myself where the balance will come from, ask for help (in theory -- in practice, I'm terrible at this), and feel much more in control because I've decided for myself that the activity is worth the cost.

- To give myself permission to stop

There are many things I both want and should do more of, and it is hard to keep myself from pushing through them. I may feel like I can pick up the house for another half an hour, but if I know exactly what the rest of the week looks like, I can give myself permission to stop because I know I'm saving energy that I'll need the next day.

- To communicate better with doctors and, well, everyone

I am notoriously terrible at communicating with everyone, especially doctors, and equally notorious for giving the impression that I have my act together. I start every conversation with medical professionals with the warning: "you really can't trust what I'm saying". But then I launch into my well-prepared, well-rehearsed appointment agenda, and it's easy to think I might actually have my act together.

It's one thing to say "if I have a big day, I have to stay home the day before or the day after" -- It's another to have the data that shows exactly what the activity limit for the week is, and the consequences when I went over it.

Equally, there is a big difference between 'how I am' one day to the next, and even just morning vs evening. For a variety of reasons, some because of the illness itself, some because of medicine and side effects. But this means that a doctor only sees one day out of three months and tries to gauge 'how I am' overall, and is probably not getting a very good picture of Life As It Stands.

"Know Thyself"

I am living in a land of unknowns. We don't know what's causing this, and even more -- we don't know if it's going to get better. I have felt for awhile that I have hit a long-term plateau in terms of physical healing. But I am getting better at managing all of this, which gives the appearance of improvement.

Which is both good and bad -- very good that I'm getting better at Life, and able to have more good days that go the way I hoped they would. Bad in the sense that it gives the impression that I am improving, and belies the giant cliff looming just off-screen that I could trip over with one wrong turn.

If I was 'Well', it would probably seem a little bit ridiculous, and even with this illness, sometimes seems like overkill. But knowing exactly what the bank-balance on activity is, is probably the most empowering thing to have come out of the past two years. I want it to be a way to communicate with others exactly what Life looks like, and the reasons I can seem okay while still being very not okay.

But even if that doesn't quite happen, it is a huge step forward to put actual numbers on things and foresee the consequences of taking on too much... it means getting back the power to make my own priorities and build exactly the life that I want within these new boundaries.

More Strategery

Monday, April 25, 2016

Music Monday: The Oh Hellos

The Oh Hello's have been lurking around in the background of my musical word, waiting for me to hit stop. repeat. and pay them some attention.

It seems kismet that I found their song 'Second Child' today, as the Second Child of my family (my 'big' younger brother) and his wife are off on a grand adventure on the far side of the world (spoiler alert for next week, if you caught that).

The Oh Hellos

Through The Deep Dark Valley [Amazon]

Dear Wormwood [Amazon]

Second Child [Youtube]

"See I was born a second child, with a spirit running wild"

NPR Tiny Desk Concert: [Youtube]
Some of the music here is from The Oh Hellos' recent second album, Dear Wormwood, which was inspired in part by the writings of C.S. Lewis; it's about a protagonist who doubts a relationship before finding the resolve to never look back.

Happs Bday to my far away family.

"Be Good, Be Safe"

More Music Mondays

Monday, April 18, 2016

Music Monday: Morning Routine

Post-illness, it seems nothing is automatic anymore. So I've started to try to incorporate more routines into the day, to try to set up activities and tasks that might eventually be able to go on 'autopilot' and until then will have some safety nets built in to catch mistakes or moments of confusion.

My morning routine involves coffee, stillness, gentle stretching, checking the CBS Morning app for the Eye Opener headlines...

But it needs background music. Here's the new playlist to start the day. Work in progress.

Be Thou My Vision
-- The Mandate

Be Still My Soul / What a Friend We Have In Jesus
-- Selah

Concerto for 2 Violins in D Minor, BWV 1043: II. Largo Ma Non Tanto
-- Academy of St. Martin in the Fields

Mass in B minor BWV 232, Missa: Gratias agimus tibi (chorus)
-- Orchestra of Collegium Vocale, Philippe Herreweghe & Chorus Of Collegium Vocale, Ghent

How Deep the Father's Love for Us
-- Nichole Nordeman

This Is My Father's World
-- London Philharmonic Choir & National Philharmonic Orchestra

Symphony No. 9 in D Minor, Op. 125, "Choral": III. Adagio molto e cantabile
-- Berliner Philharmoiker

All I Really Want
-- Lincoln Brewster

Yes I Will
-- Bebo Norman

O Love That Will Not Let Me Go
-- Indelible Grace Music

All That I Am
-- Rend Collective

Blessed Be Your Name
-- Tree 63

Do Not Be Afraid
-- Tanner Clark

You Are My Vision
-- Rend Collective

More Music Mondays

Friday, April 15, 2016

Friday Five: More Random Links

Continuing last week's theme: 5 more random links from my very long 'to read' list:

1) Creating a Social Media Strategy

Short, sweet, good overview of how to do social media.

2) Therapeutic Relationships – Getting the most from Healthcare

I have been loving this blog because the writer is both a chronic illness patient -and- an occupational therapy student. So she has experience and perspective from both sides of the patient-provider street.

3) mHealth Apps and HIPAA : New Guidance Sheds More Light

"the consumer’s use of an app to store, manage and possibly even transmit data to a covered entity does not by itself make the app developer subject to HIPPA compliance." 
 "Therefore, it becomes extremely important for app developers to determine who their clients are and if they are covered entities, and if their app creates, receives, maintains or transmits identifiable information. "
I have all sorts of questions about potential liability for independent groups that create health apps...

4) Letting Patients Tell Their Stories
I am better at many things than I was when I started my journey to become a physician more than a decade ago. But I am not sure that understanding patients as people — and placing them in the context of their long, messy, beautiful lives — is one of them. 
Doctors are trained first to diagnose, treat and fix — and second, to comfort, palliate and soothe. The result is a slow loss of vision, an inability to see who and what people are outside the patient we see in the hospital.

5) Physicians and patients must retake control of how health care is delivered
Nobody has asked the fundamental question, “Can you show me how all this helps my patients?” It is a sad situation when physicians, highly trained in the art and science of healing, are forced to become data entry clerks (no offense to clerks) and secretaries (again I don’t intend to offend secretaries either). But how can we care for patients when we are forced to do things we did not train for nor are good at? Why is nobody asking patients how all these changes to a physician’s responsibility has changed a patient’s perception of their relationship with their doctor?
Good perspective on the doctor-side frustrations of appointments and patient-tracking.

More Friday Fives

Friday, April 8, 2016

Friday Five: Cleaning Out the Inbox

My inbox is jam-packed with links I've sent to myself to read later...

So I read through the stuff until I could find 5 that were worth sharing --

Todays Friday Five: Five Random Links.

Interrogation of Patient Smartphone Activity Tracker to Assist Arrhythmia Management

Fitness trackers are useful for more than just encouraging exercise.

Seeing Cell to Cell Differences for First Time Explains Symptoms of Rare Genetic Disorders, Finds Penn Study

Figuring out the stuff going on in the cells of people with rare genetic disorders.

RX: The Quiet Revolution

Doing medicine differently. Told from doctor's perspective. Needs a companion piece told from patient perspective.

Autonomic correlations with MRI are abnormal in the brainstem vasomotor centre in Chronic Fatigue Syndrome

The did some special MRI scans and found weird stuff in Chronic Fatigue patients which seems to show that the parts of the brain that control different functions (like heartrate and blood pressure) are okay but there's a problem with the way they talk together, which could explain some of the hr/bp problems that CFS patients have.

64 Healthcare IoT Startups In Patient Monitoring, Clinical Efficiency, Biometrics, And More

64 Startups making new healthcare tech. (And the problems they are trying to solve).

More Links and Lists

Monday, April 4, 2016

Music Monday: Elle King

Apologies for the unintentional Spring Break from blogging. Blame a confluence of sick-days, limit-testing, and extra activities for Holy Week.

But we all need a few days off now and then, and it turns out the limit-testing (and aftermath) proved to be some extremely useful data in understanding exactly what my limits are these days. (More on that later).

In truth, I'm still in 'recovery', and will spend today rearranging some schedules in order to avoid hitting another wall this week.

But it's time to get back on the blogging wagon.

And long past time to spend a night out at some live music... Something about 'Karolina' urging a re-write of April goals. A trip to Muddy Creek, or Cedar Grocery, or the Garage would be some much-needed heart-medicine.

Elle King

Ex's & Oh's Youtube

America's Sweetheart Youtube

Kocaine Karolina Youtube

More Music Mondays