chronically exhausted

The first thing I did was create a pain scale. I needed a way to measure and quantify the intensity of the pain and then communicate that to my doctor.

I put it at the very start of the journal because I needed it to be easily accessible. I looked at a lot of pain scales and cobbled this one together based on a bunch of different ones, with the pain levels defined by how perceptible the pain is and how it affects my functioning. I also wanted each level to have clear parameters to avoid confusion and to help me rate pain consistently and quickly.

I wanted this to be simple and easy to follow, so I decided to not include the type of pain in the scale. This only tracks the intensity of the pain. I also didn’t want to use comparisons to injuries as part of the definitions (like “the pain is as bad as a sprained ankle”, which a lot of pain scales use), because those are still subjective experiences. This is just what made sense to me, and it doesn’t matter if it doesn’t line up with other pain scales as long as I’m consistent. And then I color coded it because that’s just Who I Am.

OKAY, NEXT UP is the monthly ‘habit’ tracker

I used a cute habit tracker stamp as a way to have a monthly ‘overview’ of some things I wanted to track. (Also I used these markers to make the dots. I love them.) Here are the things I’m tracking:

Pain - overall pain level for each day (marked with its corresponding color from the pain scale)

Stretches - how good I was about doing my physical therapy stretches each day

Cymbalta and Adderall - if I took my meds that day lmao (the Adderall shortage was BAD that month, I was out of meds for three weeks!!!)

Crafts - if I did any crafts that day. crafts are so important to me that NOT being able to do them bc of my pain is worth mentioning, but also sometimes doing crafts makes my pain flare up, so I wanted to track my Crafting Activity

Work - did I go to work that day

Aside from the pain tracker, these aren’t color coded. I just picked a color for the month lmao

Okay, onto the DAILY LOGS!!!

Feel free to zoom in and read my daily logs if you want. BEHOLD!

Things I tracked:

Weather - the daily high and low temps and what the weather was like (sunny, cloudy, rainy, etc). I had a suspicion that the weather affected my pain, so I wanted to track that

Sleep - when I went to bed, when I woke up, and roughly how much sleep I got. I had these cute phases of the moon stamps that I used to visualize the amount of sleep. just for fun <3

Today/Activity - just what I did that day. What the day was like. I mostly tracked work and how big the workload was that day

Relief - pain relief measures I took

Crafts - DID I DO A CRAFT. WHAT DID I DO

Pain Log - I sure hope I’m tracking this in my pain journal! Throughout the day, if I felt a New Pain, I would write what I felt, when, where, describe the pain (sharp, ache, etc), and assign it a level with the dot markers. That’s where the color coding came in! This evolved over time as I figured out what was the most useful way for me to record it. Also these were very quick notes made in the moment, which is why they’re so abbreviated.

I used a combo of stencils and stamps to make the daily logs. Every night, I would set up the layout for the next day’s page, and in the morning, I would fill in the weather, sleep, and activity sections. (I often added to the activity section over the course of the day, too.)

And then at the end of each month, I reviewed all this data and made THIS

There are two graphs: Sleep and Pain correlation and Weather and Pain correlation.

I wanted to see if my pain levels correlated with how much I slept the night before. I also wanted to see if my pain levels correlated with the weather (and I noted if it had rained, too). I’ll just let you look at the graphs instead of explaining them further lmao, but feel free to ask questions. These were interesting but there weren’t strong correlations imo.

The page after the correlation graphs has a cutout of a lil bald guy from some pain diagram I found. I chose that diagram just because I liked it. I went through my pain logs for the month and for every time I logged pain, I added a dot on the lil bald guy in the area I felt pain with the corresponding color for the pain level. This one was super helpful because you can really SEE where my pain is clustered and how intense it normally is.

And then I had sticky notes for other things I wanted to mention to my doctor during the appointment.

So yeah! That’s my pain journal! It was a lot of fun to make tbh and it was very helpful. I only kept it up for about 3 - 4 months, because my pain actually improved enough that I didn’t feel the need to keep logging it. But I did enjoy it during the time I did it and I like looking back on it.

I carried it around with me at work (so I could log pain as I felt it), and I think it helped my coworkers understand how much pain I was in and how much it affects me. I was literally always in pain, every single day, even if I didn’t show it. Some days the pain was very mild, but tracking it (and seeing my coworkers’ reactions to me tracking it) helped me understand that it is NOT NORMAL to be in pain all the time.

It was EXTREMELY helpful to take to my doctor’s appointments. Having a physical and very visual record of my health and other maybe-relevant aspects of my life to share with my doctor was just really helpful. It allowed me to communicate the situation better than just trying to remember what the past few weeks had been like, and it gave my doctor a lot of info to look at. (Maybe too much? lmfao.) Also seeing his face when I revealed my tome of data was really funny. I’m very normal.

And I will re-emphasize that having a clear, defined pain scale to refer to was really important. It gave us a clear frame of reference for our discussion, and I think it was a solid way to communicate a very subjective experience. The pain scale made sense to my doctor and we flipped back to it a lot during the appointment.