Welcome to 2021, everyone! It’s 32 degrees Fahrenheit and pouring sleet in Urbana, Illinois this fine New Year’s morning. The dog has already thrown up on the carpet, and I feel like there is a hole in my forehead above my left eye that’s exposed to the wintery cold. It’s an icepick headache kind of morning.
A New Year of Bullet Journaling
But I will not be daunted! I have plans for this New Year, and I will do my best to set them in motion today. Starting with the list I created for myself for the day in my new Bullet Journal.
I have made a couple of videos already about my new bullet journal on my YouTube channel (Archer and Olive Subscription Box Unboxing and January 2021 Bullet Journal Setup) but just in case you haven’t seen them, here’s the gist: I’m chronically ill and bullet journaling partly to get more done with less confusion but mostly to show myself what I can accomplish with a tumor in my head.
(By the way, I really love my Archer and Olive stuff, and I was given a referral code. If you use my link as a new customer, you get 15% off of your first purchase.)
A New Year of Coloring
For the next 365 days, it is my plan to color a GPI (general pain index) diagram every morning. I’ll be using AutoDesk Sketchbook (it’s free to download and a great program if you can’t afford Photoshop or Illustrator) so that I can just open a new file every morning, assess my pain, color in the general pain index accordingly, and tuck that information away for future reference.
Maybe I’ll learn something new about what makes me pain worse or better. Maybe I’ll be able to help my doctors understand me better. And maybe I’ll just get into the habit of being mindful of my body first thing in the morning and learn to take better care of it. Who knows what the end result will be, but I’m eager to find out.
Here’s my first day of GPI coloring. I just grabbed a diagram I found on the internet like the ones they hand out at the doctor’s office and saved it as a .tiff file. The color range I’ve chosen is snagged from thermodynamic images I found online as well. The difference is that instead of them representing temperatures like red equals hot, blue equals cold, red equals the worst pain (8-10 on the pain scale) and blue equals the least pain (1-3 on the pain scale.) Purple is zero, meaning no pain.
I made this diagram about two hours ago when I first woke up, and it is already outdated. Chronic pain is such a dynamic thing. When I first woke up severe pain covered about 20 percent of my body. Now we’re closer to 80%. To the point my hands are getting numb and there’s a dark red strip of red across my lower back now—about where the blue and green section meet on the posterior image above.
Dear God. Dan just took this picture of the gas grill on the patio that we regretfully forgot to cover at the end of grill season. I am going to be nursing a lot of aches today, and so I cut this blog post short. More later. Happy New Year, guys.
Which means that I was a 7 or 8 on the pain scale less than 24 hours ago, and I woke up at about a 4 or 5.
This is my shortest flare in recorded history. (Yay, iron?)
***
The second time I was in the ER with a gall stone attack (2014), the attending nurse asked me where I was pain-wise on a scale of 1 to 10.
“Definitely a 10.”
She wrote that number on a dry erase board in my room, and then asked me where I’d like to be on that scale.
“I don’t know? Like 5?”
She laughed, but she wasn’t mocking me. “I think we can do better than that,” she said. “How about a 1 or a 2?”
Then it was my turn to laugh. “Uh, okay.”
She gave me IV dilaudid and in seconds, I was totally free of pain.
***
My point is not that I want to be pumped full of dilaudid all the time, but that people who experience chronic pain will happily accept any improvement on their current circumstances—even if that’s somewhere between “nagging pain, uncomfortable” and “miserable, distressing.”
Whereas compassionate people who have no experiential concept of chronic pain will be like, “Why the hell wouldn’t you ask for a 1? Dilaudid exists for a reason.”
***
On a related note, I typically call today’s 4 or 5 “better.” And I’m actually pretty happy to be here, because relative to yesterday’s misery this is better.
But I’m still hesitant to say the words “I feel better” because that can be interpreted as “I feel all better.”
For some people saying “better” is like saying “I had the flu last week. Today I feel better.”
It turns out Tuesday wasn’t a flare day after all. It just seemed like it because I hadn’t yet experienced Thursday. Now here I am Friday morning after a really cruddy night’s sleep drinking my one caffeinated beverage per day*, staring down eight hours of work.
I can’t even begin to explain how or how much I hurt today.
What I can tell you is that last night it got so bad I started doing the math. I’m 36. I figure barring something tragic, I’ve got plus or minus 40 years left of this. At which point I either leave this planet or the doctors decide I’m old enough to be made “comfortable” …until I leave this planet.
Seems morbid, I know. But every time the pain creeps into 8 and 9 territory on the pain scale (I reserve 10 for that time in the ER when the doctor pressed on my upper right abdomen during a gallbladder attack and I fucking LEVITATED off the hospital bed) I can’t help but wonder if I’ve found my new normal.
If it comes without reason or explanation, why wouldn’t it stay without reason or explanation?
*A self-imposed rule, really. I allow myself a cup of coffee in the morning to try and fake being alert, but that’s it. Because #painsomnia.
For most of yesterday, I sat at my computer wondering why I hurt so bad. I figured that if I was going to have a bad day this week, it would have been Monday (my first day back to work in three weeks).
Nope. Because nothing health-related can ever make sense in my world, the flare had to visit me Tuesday. By the time the clouds had gathered, I was an 8 out of 10 on the pain scale. I saw it coming, but there was stuff to do.
By the time work was over, my body was involuntarily L-shaped. I had been so focused on work that I couldn’t unbend myself or get out of my chair at quitting time. I was sad, achy, stiff, cold, and anxiously jumping to worst-case scenarios in no time.
What if this time it gets so bad I have to stop working for good? What will happen to us?
Then I remembered the cannabis gummies sitting on my nightstand, and I took one-fourth of one.
***
I recently read that chronic pain patients don’t take pain meds correctly. Instead of staying on top of their pain and keeping it muffled and bearable, they wait until their pain is so obnoxious they can’t function to seek relief.
There are likely a few reasons for this, ranging from “I am tougher than this pain, I’ll keep pushing” to “I don’t have enough medicine to handle my pain, I’ve got to ration this shit in case things get worse” to “I’m really tired of my government, my doctor, and my pharmacist treating me like a junkie.”
***
As the cannabis made me comfy, I decided I’m going try not to label people that need relief from pain as anything other than people that need relief from pain.
This is my fibromyalgia. There are many like it, but this one is mine.
Fibromyalgia is typically defined as “a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.” I have found this definition particularly useless when trying to explain my life to friends and family, so this is my attempt to compile an exhaustive list of what my life is like with fibro*.
I was diagnosed by a rheumatologist** about five months after my first complaints of muscle weakness and generalized, on-going pain. On a questionnaire, I answered questions about my sleep. On the same form, I was asked to shade in the parts on the human body that hurt.
“I see you shaded in your entire body, front and back,” the doctor said.
And then he pressed on seemingly random areas of my body. The pain was so intense my knees buckled and I cried out in the exam room. That was the day I learned about trigger points—the day I realized I could actually hurt worse. The day someone induced my first honest-to-god fibromyalgia flare up.
Limited range of motion (particularly in my neck and shoulders)
Gait problems
Falling
Widespread nerve pain
Joint pain
Swelling in hands and feet
Burning sensations in hands, feet, and legs
Itching sensations
Cold and numb sensations on face and nose
IBS-D
IBS-C
Migraines
Chronic headaches
Vitamin D deficiency
Malnutrition
Dry mouth
Dry eyes
Abnormal breathing (catching my breath with no apparent cause)
Hiccups after eating or bending over
High blood pressure that fluctuates with pain levels
Hypersensitivity to light, sound, smells, touch, tastes
Waking ranndomly to pounding heart, increased respiration (like my fight-or-flight kicked into overdrive for no other reason than it wanted to)
GERD
Fatigue
Weight gain
Nausea
TMJ
Anxiety
Low body temperature (usually around 97, at 99 I feel feverish)
Sensitivity to medications
Reduced (non-existent, if I’m honest) exercise tolerance
Brain fog (crappy short-term memory, inability to recall words, inability to multi-task without getting completely derailed)
Temperature sensitivity (both cold and hot)
Some of these things are constant, and some of them come and go. Obviously some have a greater impact on my disability than others.
I’m probably leaving stuff out because I can’t brain.
Some of these are mitigated by drugs (the IBS-D, for example). The only thing we have been able to stop long-term so far is the IBS-D. God, that’s depressing.
Anyway, I think Dr. Ginerva Liptan describes the mechanism of fibromyalgia pretty well in her book, The Fibro Manual.
Got questions? Ask away.
*Not everyone with a fibromyalgia diagnosis experiences the same things. In fact, though there are many similarities among patients, I’d say no two cases are exactly alike.
**As I’ve written in prior posts, my relationship with the acceptance of this diagnosis is best described as on-again, off-again.
