5 Tips for Keeping a Symptom Journal

Keeping a symptom journal helped me understand my chronic condition. Here are some helpful tips for starting yours.

I chased my proverbial tail to get a diagnosis pinned down. I knew something wasn’t right, but I was unsure of what it was.

My symptoms included shortness of breath, constant fatigue, and a racing heart upon exertion. I thought that once I had a name for my disease, solutions would follow, but nothing could have been further from the truth. It only brought confusion and bewilderment.

I was diagnosed back in 2015, on the cusp of my 60th birthday. I was one of the missing millions who walked around with COPD for many years, not knowing what it was or how serious it could become.

My doctor failed to acknowledge it, and so I waited another 3 years, all the while getting worse but being told I was doing just fine.

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My COPD took a scary turn

As I was getting ready for bed one night, my heart began to beat out of my chest, and I was extremely short of breath. I had no idea what was happening. It was probably the scariest moment of my life.

Right there and then, I knew I was dying. I had a sudden cardiac arrest, and my heart stopped. When paramedics arrived, I had no vital signs.

Doctors and paramedics were wonderful. They kept reviving me as my heart kept shutting down. After a few hours at the hospital, my doctors stabilized and ventilated me. They had little hope to give my family but said that if I made it through the night, they would check for brain activity. Those were very scary days.

I began to understand that if I wanted to control my COPD, I would need to learn to manage it myself.

5 tips for starting a COPD symptom journal

My doctor told me that I was the CEO of my life and that I was the only person who was qualified to do the job.

I asked him how I would do that, and he said knowledge is the key and that if I charted the way that the nurses do in the hospital, I would gain the evidence-based knowledge necessary to manage my ever-changing symptoms.

He suggested that I start a daily journal and track my symptoms. Here are some tips for starting your COPD symptom journal.

1. Shop for your book

At first, I grabbed some paper and started writing in a binder, but the binder became cumbersome and bulky. I wanted to streamline my journal, making it look a little fancier, so I got a dollar store book and began a more professional setup.

With the help of online videos, I had lots of suggestions. Finally, I found a moleskin notebook made specifically for journaling. It made all the difference and was well worth the price. The difference in the paper is important because of the leak-through from the pen.

2. Plan your layout

I like to have a landscape layout with two pages per week that face each other. I use the calendars that I always get at the beginning of a new year and cut and paste them into my journal to help me manage my time. Here are the items I make sure to track each time I write in my journal:

• My symptoms change with the changing weather, so I always track the weather and how it makes me feel.
• I track steps, distance, and time of daily exercise. This is great for understanding how the weather makes me feel and my ability to exert myself. On high-humidity days, exercise can be impossible.
• I track what I do and how I feel about what I accomplish daily.

2. Select your pen

Choosing a pen is a personal preference. Go shopping and try out different pens and see what works for you so that you look forward to the feel of the pen. This will encourage more activity in your journal.

Colored pens help to bring out your creative side. While you’re in the store, ask for help if you’re uncertain.

3. Number the pages

Because it’s a reference journal, numbering your pages is a really good first step. It takes a few minutes to number your pages. But don’t worry. They don’t all have to be done at once.

It is much better to reference a page number than to try to go back and find what you are looking for in the future. I like to put my numbers in the lower left or right corners.

4. Create an index

The first 30 or so pages should be skipped and left blank until you’re ready to fill them. Here are some of the things that you will fill these pages with:

• Contact information: Include your name, address, and phone number if the book is lost or stolen. Always offer a reward for return.
• Legend or keys: I create some keys to easily mark complete tasks, appointments, and events.
• Medical information: Include your medical history, your medical team’s names, phone numbers, hospital stays, and vaccination dates.

5. Track and chart your information

You will determine what information to track, such as doctors’ appointments, exercise, weather and air quality, and sleep trackers. The information that you track is unique to you, and whatever you need to manage can be converted to a tracker by simply adding lines and grids.

If you have other conditions such as high blood pressure, multiple sclerosis, or diabetes, you may want to set this up as a daily tracker to monitor the changes and what triggers the changes.

It is not just about tracking and charting the information. It is about knowing what the information means.

Takeaway

Finding daily gratitude is one of the most important things I can do for myself. It helps to keep me grounded and to appreciate the little pleasures in life that we often overlook.

I recently called an ambulance. Everything I tried had failed, and I needed to get some answers. It was a fast and furious visit as they tried to gather as much information as possible in as very short a time as possible. I’m grateful my journal held the answers to get to the bottom of my issues.