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.
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