In a previous blog, THE LAST 5 MINUTES: 8 Concepts and Contemplations in Healing, nurse practitioner Mindy Daigle discusses eight ideas that can help a person heal. In the following post, she zeroes in on item #2 on her list.
By Mindy Daigle, NP
“It’s such a long slog that sometimes I really don’t know if I am making any progress.” This is a common statement from my patients as we start out the appointment.
At the beginning of every encounter, I inquire about how they are feeling overall and how they feel about where they are in this process. I ask where is the needle moving: Better? Worse? Plateaued? It’s a sort of quick progress report.
We then move into what I call five broad categories: pain, sleep, mood, gut and energy. They report generally and in detail on each category then delve into all other body systems.
Treatment progress can be slow with chronic Lyme disease and many chronic conditions. Sometimes described as a process of one step forward, two steps back, the next month may be two steps forward with just one step back.
Knowing that advancements are made slowly can set a realistic expectation when estimating recovery time. There are times, especially in the beginning of treatment, when drastic improvements are made very quickly. This can lead to a belief that changes will continue to happen rapidly, when that is usually not the case.
Over time it can become difficult to notice the wins and improvements. It can be challenging to determine when there is treatment failure versus plateau versus slow progress.
Tracking symptoms
Two practical ways to approach this are by symptom-tracking and note-taking in between appointments. We have patients track their changes at every visit. This allows the patient to notice trends and allows me to judge effectiveness of treatments and to guide therapy.
With each appointment, I review symptom tracking sheets from the three most recent visits, along with the World Health Organization Disability Assessment Score and the Horowitz Tick-Borne Disease Questionnaire.
We look together at the more recent trends and when necessary go further back in time. At certain intervals we review symptom-tracking from one year prior and then back to the initial consultation, judging efficacy of therapies over much longer time periods.
We can take a close-up view or zoom out to see the trends over time more clearly. We discuss symptoms from the past that have resolved, new ones that appear and sometimes note that new symptoms may be a sign of treatment success rather than failure.
Ways to do this
There are many ways that you can incorporate this into your life, I have seen many examples in my practice. One patient is a full-time data scientist. He uses the power of his personal data to track his progress over time.
Five days a week, he uses spreadsheets to record an exhaustive list of the severity of his symptoms such as pain and fatigue along with objective findings such as vital signs, lab findings and treatment changes. When faced with a challenging time or a period of perceived stagnation, he reviews his tracker, identifies patterns and usually realizes that momentum is present, and takes that as a win. When he is plateaued or regressing, he holds tight to what is working and gives himself grace.
Another patient who is technology-averse keeps a written weekly journal. She gives an overall score for her main categories of symptoms but not an exhaustive list of every symptom. When she is feeling that she is not moving forward, she refers to her notes and asks for input from her family and support system. She is focused on showing herself kindness, celebrating her wins and accepting that there are times without real progress.
Look for small changes
Most of the time, the changes are not dramatic or quick. It can feel like there is no headway being made, left seemingly without hope of improvement. It is in these times that you can identify the small changes and hold on to them as wins. Pain may have decreased from a 6 to a 5 then at the next appointment may be a 4. Take that as a win.
Then there are times progress is not happening or is too slow. It can be tempting during these plateaus or regressions to push forward, past our limitations without regard for consequences. This is akin to having ambition without direction and is not advisable. That’s when we take a deeper look at the overall treatment plan and then retool the protocol. Working together as patient and clinician, we notice the strides taken and the setbacks suffered and continue to plan a way forward.
In the 2023 chronic Lyme-focused documentary, “I’m Not Crazy, I’m Sick,” they interview Peter, father of Atty, a young lady with Lyme. In spite of spending hundreds of thousands of dollars on the best possible care for Atty, she remains ill.
There are times when she is feeling better, but not for long. It often seems that no progress has been made. Voicing his frustrations with the ordeal, Peter states “We take steps forward, but it’s a thousand mile walk.” He accurately and succinctly describes the process that he and his family along with millions of others endure as they navigate treatment.
Matters of the heart
In the last five minutes of our appointment, after completing the thorough exam and assessment, my patient and I speak about matters of the heart and how to use this process as fuel for our healing. We heal in this process of slow progress through awareness of our experiences, patience along the way, compassion for ourselves, and persistence in our actions. We continue to do what we know helps, turn away from what harms, and then take the next steps in our healing.
Have you had experience with this concept of progress being made in inches not feet? Tell me about it at mindydaigleNP@gmail.com Thank you to all who have written, I enjoy and benefit from reading your stories and experiences. Also to note, since the first article was published, I have changed the title of this contemplation to better reflect my experience.
See also: THE LAST 5 MINUTES: How “keyhole sunsets” can help you heal
Mindy Tobin Daigle is a Nurse Practitioner at Green Oaks Medical Center, in Palo Alto, California. She collaborates with Dr. Christine Green, a Lyme and Tick-Borne Disease Specialist.
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**Comment**
A very important topic that doesn’t get a lot of attention.
I whole-heartedly agree with keeping track of symptoms. The easier you make this, the better. Like all else, if it’s too difficult you won’t do it! I got a ‘month at a glance’ calendar with lines/space to write each day’s symptoms. Since I had to keep track of two people, this was indispensable for me. I then typed up an executive summary for each of us. These were the backbone that guided our treatment. If you don’t do this or something similar, you are flying blind and your practitioner will only be able to help you so much. In order to get the best care possible, you must be an active part of this process.
For more:
By Megan Prictor, The University of Melbourne
Madison Area Lyme Support Group 