Self-Monitoring Our MS: The Best Self-care Practice I Don’t Do

Do you keep track of your multiple sclerosis (MS) symptoms and medications? Many people with MS, including myself, do not engage in self-monitoring, which can lead to problems. However, there are ways to change this. Self-monitoring is crucial in helping doctors treat us better and determine appropriate counseling and treatment. A study by MS nurses in the Midwest emphasized the importance of ongoing monitoring of physical, social, and cognitive functioning. Maintaining records of a wide range of symptoms and quality of life indicators can help us understand the effectiveness of treatments and identify patterns and triggers that affect our symptoms. Unfortunately, I haven't been diligent in recording my symptoms and changes in function over the past 40 years. As a result, I struggle to remember when certain events occurred or what might have contributed to them. It's a mistake to rely solely on doctors to remember our history, as they don't prioritize it as much as we do.

The nurse/authors suggest sending records of our symptoms and experiences to healthcare providers. This information can be mailed, emailed, or brought to appointments. Keeping a record of our history can be particularly beneficial in cases like applying for disability claims, where documentation of symptom progression over time is crucial. There are multiple questionnaires available to track quality of life with MS, but they may not cover all relevant aspects or may ask irrelevant questions. It's possible to create a personalized monitoring system that includes symptoms and concerns unique to us. Monitoring mental health is also vital, and monthly depression screenings can help prevent serious depression.

It's essential to not only record symptoms but also track medication intake. Skipping doses or taking extra medication can have negative consequences for our health. I have personally experienced this with the medications I take for my neurogenic bowel issues. Remembering the schedule for taking medications can be challenging, and self-monitoring can greatly help in this regard. Additionally, self-monitoring can aid in keeping up with exercise, meditation, and other practices that contribute to our overall well-being.

Choosing a self-monitoring method that suits our preferences and comfort level is crucial. For those comfortable with technology, there are various apps available to track symptoms and medication reminders. Alternatively, using a notebook or creating a chart can also work. It's important to have a way to record symptoms, whether through a numerical scale or detailed descriptions, to better communicate our experiences to healthcare professionals.

Despite knowing the importance of self-monitoring, I often find myself resistant to the practice. It's not necessarily laziness but rather a reluctance to confront the realities of my condition. During a period of rapid progression, I avoided recording my experiences, resulting in a lack of clarity regarding specific events and feelings. Focusing on other aspects of life seemed more appealing than confronting the painful aspects of my health. However, if I had kept track during that time, I might have been able to seek help earlier. Other barriers to self-monitoring include not knowing how to start, having a chaotic life, or being too busy or tired. Despite these challenges, it's worth dedicating a few minutes each day to record symptoms and ensure medication adherence.

One valuable resource for monitoring progress is NARCOMS, a national registry that conducts surveys every six months. Participating in their surveys helps to contribute to the scientific understanding of MS while providing an opportunity for self-reflection. Additionally, joining support groups, such as MS Facebook Support Group, can connect us with others living with MS and provide a space for sharing experiences and advice.