The times of the day

In my profession of occupational therapy when I specialized in mental health, I often asked my patients to describe a typical day in his or her life.  A practitioner can learn a lot by the presence or absence of structure to one’s routine among other characteristics.  Someone who is depressed, for example, usually starts the day later with a disrupted sleep/wake cycle and has difficulty keeping a meaningful routine.  The days often lack variety, physical activity, creative pursuits/hobbies, social activities, appropriate self care, and regular breaks (for sleep and relaxation).  This can lead to a lack of satisfaction with how a person spends his or her time, an altered sense of identity in the absence of meaningful roles with which to identify, and can even erode the structure needed for at least part of the day that is needed to manage everything from daily habits (self care routines, for example) to emergencies.  The person spends an extra amount of energy just getting through the day and the day lacks enjoyment as well.  A person with an anxiety disorder or an addiction often presents with a completely opposite activity schedule generally characterized by chaos!  Perhaps the mental health issues came first?  Or was it the challenge of achieving a balanced lifestyle in one’s living dysfunctional environment that eventually compounded the issues?  It was my job to figure out the answer these questions and to design an occupational therapy treatment plan accordingly.

I have written on the topic of time management before but not within this context.  And not this personally.  I’ll leave out the assessment forms, graphs, charts, comparison tables, high math, and excruciating detail that would afford me a truly cathartic experience but provide you with a very boring blog post!  Perhaps this summary will be more meaningful than a formal occupational therapy evaluation?

This is what it is like to center one’s life around recovering from a serious illness.

Trying to get enough sleep to function:                   10 hours per day

This includes time that feels wasted trying to fall asleep, waking and go-to-sleep convulsive episodes, recovery time from the latter of those two, ruminating if I should take nap or not during the daytime (increase the hours if I am too chilled/sick to make a decision), waking up in the middle of the night to use the bathroom, additional episodes trying to go back to sleep after getting up, waking up when my beloved is snoring post exhaustion from caring for me, more additional episodes trying to go back to sleep, bedtime preparations (donning the blue light-blocking glasses to foster melatonin production, experimenting with bedtime supplements, arranging pillows and other positioning devices to minimize pain, pre-heating the mattress pad heater to minimize the shock of cold sheets that can trigger seizure attacks), preparing my emergency “lunch” bag of waking supplements/water/snack (to manage blood sugar drops, dehydration, and remedies that sometimes help), struggles to enjoy nighttime snuggles with my beloved husband until the episodes start, and most definitely:  talking to Jesus!

Medical appointments and treatments:                   3.5 hours averaged per day across the week

Medical activities include appointments with my Family Practice Physician/Chiropractor, other Doctors and professionals, IV antibiotic treatments at the hospital 3x/week and recovery time before I can go home, transit time, scheduling, communication (phone, internet, text, and messaging), coordination of transportation when needed, various lab test procedures, detox treatments, pain management-related services, and preparing all food/records/water/supplements/detox materials needed for each appointment.  “Treatments” also include various methods of detox; foot baths; salt/mineral baths; skin brushing; liposomal, topical and oral supplements; updating my daily treatment log; medical filing/billing; special nebulized and dissolved supplements; and an occasional use of essential oils.  (For the past month I have had an average of 7 medical appointments per week!  Eeeek!)

Food and nutrition                                                              3.5 hours per day

Includes making dinner and lunches for my husband daily; making separate, special diet for myself every meal (!); shopping/ordering/freezing/processing groceries from 7 or more sources; planning (research and list-making); portioning-and-freezing (since no cooked food can be stored for more than 24 hours); recipe conversions/managing recipes; updating quick reference sheets of current protocols to keep myself sane and moving forward; and symptomatic adjustments as necessary.

Research and learning                                                     1.5 hours per day

Online medical research dominates my thirst for both information and recovery.  I also include here the review of professional literature and various publications, blogging about various health topics at http://www.justjuliewrites.com, and the investigation of various treatment approaches and providers via a variety of outlets including social media.

Socialization                                                                          2 hours per day

Whether connecting with my really smart and beloved spouse (Steve), texting/messaging/emailing friends, talking with friends or family on the phone, sending someone a card, or the rare chance I get to meet with someone in person, socialization is a highlight of each day!  Skyping with a couple of gals regularly for prayer, scripture, some laughs and tears has become a treasure!  Social isolation plagued me for about 3 years of these past four years of illness when I had to stop everything:  Bible studies, church activities, womens’ retreats, visiting, most travel (when all of our family is out of State), etc.  For a long time my most regular communication outside of our home was largely limited to superficial chats on Facebook!  Many people have left my life . . .  Thank the Lord for those faceless acquaintances on Facebook who were there when I was awake in the middle of the night!

Christ-centered activities                                                  1 hour per day

Here’s another improvement in consistency that includes listening to our pastor’s messages online (since I cannot be in the building due to sensitivities), reading my Bible, prayer, some blogging, and the reading of inspirational Christian publications (ministry newsletters, etc.)

Extreme avoidance activities                                           1 hour per day

Extra loads of laundry, additional cleaning, wiping surfaces with a diluted ammonia solution, management of various masks, preparation of barriers to minimize exposures in public places, nasal washes, and a myriad of other activities not reflected above.

Physical activity                                                                  .75 hours per day

This is the newest addition to my daily routine and comes in the form of more regular housework, walking our dog once per week, 10 minutes on a stationary bike once per week, and some gardening.  This figure is divided by the total over 7 days:  lately I can move around a little longer about 3 days per week for more than a few minutes in a row, yeah God!

Self care                                                                                   .5 hours per day

The time spent caring for myself has only recently increased to improve my appearance sometimes.  It feels good.

Recreational and Creative Endeavors                          .25 hours per day

Herein lies my greatest weakness and greatest area of improvement since starting treatment for chronic Lyme disease.  Until now there hasn’t been much fun:  sewing was limited to mending (!); I couldn’t tolerate listening to music, was too sick for kayaking with Steve (my River Bear), and reading consisted only of my Fine Gardening magazine, my hubby’s war-hero novel, and a few monthly local gardening newsletters.  I sold my jewelry business last Fall and my creative juices stopped as the illness got worse.  Maybe this summer I will actually be able to work in the public garden for which I have volunteered?  Stay tuned!  Things are looking up!  This past week I was able to work in our own garden for 3 hours:  a very physical activity as well as something that I love!

So putting on my occupational therapy hat for a moment here is my brief O.T. Assessment:

The loose schemata above reveals my obvious need for more physical, non-medical self care, in-person social, and recreational/creative activities to achieve a balanced lifestyle.  Incorporating other people into the ones that I am able to pursue will probably make everything more fun and meaningful in addition to increasing social time.  Success will depend upon the ability to avoid noxious exposures until my reactivity goes down; gratefully we are entering into the warmer months here in the Midwest so doing things outside is more possible.  As I eventually spend less time in medical and medical research activities, I hope to pursue more of a primary occupational role either by developing my Two Step Solutions business or returning to traditional employment in a suitable environment.  Volunteer work perhaps at our local Extension Office may also increase.  Keeping my occupational therapy license current, continuing to learn, developing some internet and e-commerce skills, and writing, Lord willing, are strengths that may add to the possibilities without too much additional retraining.

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I am grateful to my fellow sojourners who have kept me sane when things have been out of whack! I look forward to finding a way to give back to them and others; perhaps this would be by sharing how the Lord crafted this story or simply living a meaningful life after serious illness.  I will definitely take the time I need to make a good transition knowing that there will be some good days and some that are less so.

Overall, can you hear the hope in my voice, Gentle Reader?  Yup.  Lord willing, I am getting well!  JJ

The liver that got away

Roger looked more like a tall, lanky college student than a young adult with schizophrenia.  He was also smart:  well-studied as if to be a medical school student long before the days where WebMD could make the rest of us stand out from our peers on a particular topic of interest.  There was one problem with Roger’s course of study, however.  I met him shortly after what could have been his second fatal mistake.

Roger believed that removal of his liver would cure his schizophrenia.  Yes, truly, and he would talk about it with a straight face in earnest to his psychiatrist.  Roger had poured over medical books, secured all the tools and supplies of a typical surgical suite, and attempted a procedure at home in the past.  When he could not control the bleeding at some point during the procedure he called the paramedics and was rushed to a local hospital.  They patched him up and transferred him to the mental health unit where he stayed until his psychiatric medication could be “adjusted.”

Within a short time after discharge Roger re-doubled his efforts.  He gathered more supplies for a second attempt at a total liver resection.  Somehow he never read that the liver is a vital organ and that he would die if he ever succeeded.  And who knows where he found sterile drapings, forceps, lancets, and such in the days long before Amazon and Medline?  What he did not expect the second time was the intolerable pain he would experience as he got deeper into his surgery.  He was alone and got scared.  Again he called the paramedics, was hospitalized, and landed on the mental health unit.

I worked as an occupational therapist on that unit with the even lower functioning clients than Roger.  While he was not one of my patients, his notoriety was the talk of the nursing station.  What incredible bravery it would take to operate on oneself with what, a handheld mirror?  I mean, how exactly did he do it?  I think I recall that he was discharged to a residential facility after his hospital stay in an effort to preserve his life lest he make a third attempt.  The delusion that excision of his liver could cure his mental illness was simply too strong to believe that he would ever give up his theory until he died trying to make it so.

And so here I find myself four days before my own surgical procedure, banking on a theory that excision of two teeth will save my own life.  Have I too succumbed to the “Roger effect?”  When contrasted to sick thinking, we all like to think that ours is different.  After all, I have done my research and can find clinical and anecdotal evidence that what I have asked an oral surgeon to do will cure the worst of my ills.  Dr. R doesn’t agree with my suppositions (a biologic dentist did!) yet is willing to proceed to diminish years of dental pain AND after having required extraordinary precautionary measures!  Lord willing all will be completed on Thursday, March 26th:  my spirit will no longer be crushed with the virtual hell that has left me bedridden most days.  (See this blog for details: https://justjuliewrites.com/2015/03/01/only-my-potato-chips-remain-crushed-today/)

Looking back to my days working in mental health I realized that I have come a long way in my view of the world.  Today I am more willing to ask the tough questions of life than in the past.  I see that I am not so different from many of the patients who landed in a “psych ward.”  By the grace of God I did not have to be admitted or committed when my despair exceeded my ability to cope.  Somehow the Lord provided the hope, the help, the peace to carry on until the day when the pain was no longer unbearable.  Gratefully, much emotional pain has left my life for good.  Much joy has taken it’s place even in the face of this horrible illness.  My internal joy is no longer measured by my circumstances; He has allowed me to overcome immeasurable desperation.  I believe that things will begin to turnaround this week.  This week people!

If he is still alive today, I do hope that Roger has found some peace with his struggles.  Wherever you are today dear one, I pray these words from the Lord for you and your loved ones.  Sometimes letting go of that one thing that got away in our lives is the very thing that brings us to all that we seek:  the joy that passes all understanding.

John 16:33 (NIV)

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

John 16.33