An idea for a new project has come to mind so when I’m not here, I’m brain-dumping in Microsoft Word. The topic: helping others with chronic illness with the day-to-day practical barriers to living.
My career in occupational therapy included evaluating the daily “occupations” in the lives of my patients and the skills he or she needed to get through the day. Occupations can include homemaking, pre-driving skills, functioning on the job, and more. When the person was unable to complete the steps, tasks, and activities needed to perform those daily occupations then O.T. was offered. Treatment began during an inpatient hospital or rehabilitation facility stay and continued in outpatient or home care therapy sessions. I have had the privilege of working in all of these settings. My favorite was always home care. When you are working with a patient in their own living situation, the evaluation is often more accurate and the remediation more meaningful. This was my part time work when I became sick on October 11, 2011. Within a few months I was unable to continue. Since then the remediation has focused on my own home and health!
I am grateful for my 30 years in occupational therapy practice. The Lord led me to a profession as a high school graduate that would provide a fulfilling career my entire adult life. I enjoyed serving others in both psychiatric and physical rehabilitation settings, with adolescents to older adults alike. I have been with a patient just moments before she passed away and another when he realized that his disabilities would be permanent. To look into the eyes of someone about to lose their independence because of his medical condition and another who needs a little nudge to realize she is ready to return to work are equally humbling experiences. And these days when I look into the mirror, I have some of those same discussions in mind as I consider the challenges of my own life these days. Gratefully, I have a rich variety of experiences and resources upon which to draw. In many ways I have not had to struggle as much as my patients because of my training as an OT.
For example, I intuitively know the importance of planning ahead in the evening for the next morning. If I wake up with seizure attacks and my husband is alone, I generally have a plan in place to meet my basic needs in case I would be unable to leave the bedroom. The night before, I usually pack a breakfast with my a.m. medications, enough water and food (following my special diet) to make it through the first part of the day. Low blood sugar can exacerbate my symptoms so this strategy has become one of numerous methods employed to cope with my limitations of late. I am grateful to the Lord for the skills He has giving me, His help in my time of need, and His leading me to a profession that has allowed me to cope through many trials in my life.
So why don’t I see what I can do to help others with this knowledge? When I did a preliminary search on coping strategies, I found a great deal of resources on the topics of emotional, psychological, and social skills for persons with chronic illness. This was a great discovery and I benefitted from reviewing these blogs, articles, book reviews, and so on. But where were the day-to-day strategies for example, in preventing falls when dizzy because of a medication side effect? In my role as an OT, I could point to many disease-specific organizations that might have such resources, for example the Alzheimer’s Association or Multiple Sclerosis Society. This information is also easy to find within the disability community. But what about a person with Lyme disease? Sick building syndrome? A temporary illness? Persons with a serious, multi-diagnosis, ongoing illness numbers in the hundreds of thousands or more. I see them on Facebook forums, WebMD, and the like. I would like them to know that there are simple strategies to reduce their daily struggles, improve their ability to function, and in doing so also keep myself sane while on the path to healing.
We have a saying within the therapy profession that goes like this, “therapist, heal thyself.” While this is not entirely true, certainly a therapist can do pretty well at rallying some resources to get the healing process going. My hope is that by sharing some practical information with others I will not only keep myself sane as I write but also gear myself up for returning to a productive life someday soon. The complications of my own illness make it difficult to concentrate, use various thinking skills after several episodes per day. The challenge of writing, editing, researching, and publishing my first eBook did help fire some neurons in a meaningful sequence here and there! I’m thinking I’ll try it again.
If this resonates with you, please let me know what you would like to see in such a handbook. The current outline begins with the morning of a typical day and continues through all of the activities of daily living until bedtime. I will include information on fall and injury prevention with references for sample adaptive equipment, such as a sliding tub transfer bench or automatic night lights. Many of us will be familiar with parts of the information. My hope is that by systematically reviewing a person’s typical home environment that there will be new insights: a little something for everyone and his or her caregivers. I have seen the power of a simple strategy in making the day a little brighter in the life of a person battling a serious illness. Maybe this will even lead to a forum where there will be an exchange of information as well. I am looking forward to the possibilities . . .