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I made this diagram about two hours ago when I first woke up, and it is already outdated.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.
The first rule of blogging is there are no rules of blogging. At least not here. So I do what I want.
Even when I was younger and perfectly healthy, I had trouble sticking with my personal blogging commitments. A decade ago my grand idea of posting every day morphed into a reluctant acceptance that life is just too complicated.
Maybe just three times a week, I thought to myself.
And here I am ten years, five blogs, four jobs, and one chronic illness later finally accepting that all I can do is write when I’m feeling up to it. Hell, I might not even be able to complete this 30-day challenge.
I’m nowhere near as prolific as I used to be. In my twenties, I’d go from writing a term paper for my Organizing for Social Action class to drafting website content about funeral customs to writing a magazine article for nine-year-old kids to blogging about the funny, if inconsequential, things that happened to me.
Today I write for my 9 to 5, and then write a few blog posts a week—depending on how badly I need to access my “outlet” and how much energy I have left. I haven’t done any freelance work for well over a year, though God knows the extra income would be nice. And even at this modest pace I often feel like I’m stretching myself too thin, egging on my next flare.
The perfectionist inside me (the oblivious twenty-something that would read a post thirty or more times before hitting publish and want to just fucking die upon realizing a week after posting that she’d still missed a typo) hasn’t completely died. She spits and sputters to life occasionally.
I’m learning to embrace errors the same way I learned to embrace my shower chair and walking cane—slowly and stubbornly with lots of internal melodrama, until forced to admit there isn’t another way forward right now.
I guess overall my goal is to approach this blog as an act of self-care. That means no rules, no scheduled posts, no trying to drum up more traffic, and no feeling like a failure for posting a dud or going long stretches without writing.
I do what I want.
This post is part of the Health Activist Writers Month Challenge (#HAWMC).
Prompt 2: What’s the blogging process look like for you?
My hands are swollen today. My skin burns. My knuckles ache.
If I use the computer mouse for too long, my hand curls into that shape, and I have to force my fingers and palm to straighten out. At the same time all off my muscles—in addition to the ones in my hands—are weak. I mean can’t-stand-up kind of weak. And can’t-raise-my-arm-to-scratch-my-nose kind of weak.
It might be the Gabapentin, or it might just be me racking up more symptoms that science and medicine fail to explain. At this point, I don’t know what’s what. And once again I find myself wondering if this is reallyfibromyalgia.
At the end of last week, I had accepted as much. But with so little solid information out there about fibromyalgia, it’s hard to remain 100% committed to the diagnosis. My feelings on it change with the barometric pressure.
***
I had planned yesterday to do a couple of laps around the backyard. But it didn’t happen. I was so exhausted after a basic shower that I couldn’t even trim my nails or keep my eyes focused on the TV until the end of the vice presidential debate.
So why the hell couldn’t I sleep when I finally gave in and went to bed? Because instead of sleeping, I had imaginary conversations with a few of my doctors.
Now, I’ll be the first to say that a lot of Spoonies would kill to have an encounter with their doctor (actually, she was a physician’s assistant) like I described last week. One where the provider reminds you that you aren’t to blame for your condition. But it was a long visit, and it wasn’t all rainbows and sunshine. One part of it in particular really made me bristle.
***
“You can’t tell me you’re not depressed,” she said. “Anxiety, depression. These things go hand-in-hand with fibromyalgia.”
Well, since she admitted I couldn’t tell her I wasn’t depressed, I didn’t try. I would have shrugged in her general direction but the intense pain in my neck, shoulders, and back wouldn’t allow it. So I just sat quietly, stifling the urge to shout at her. (As an aside, did you know that some doctors have signs in their exam rooms warning you that they and their staff will not tolerate swearing or disrespectful treatment? The fucking irony, guys.)
***
Have you ever heard of the term non-compliant as it relates to a patient? Unless you’re a chronic patient, I’m guessing not. It’s what doctors label patients who don’t follow orders. I would guess that practically every patient would qualify as “non-compliant” at some point.
Ever eat high-cholesterol foods when your doctor says don’t? Ever fail to finish the last couple of antibiotic pills in your prescription? Ever watch TV instead of getting up and moving around? Ever just cancel that follow-up appointment because you felt better and didn’t want to waste anyone’s time or shell out for another co-pay?
Congratulations! You are a non-compliant (or difficult) patient!
A decade ago as a young, mostly healthy patient, there weren’t really any consequences for my non-compliance. If I didn’t finish my dose pack for a sinus infection, the doctor would never know. I probably wouldn’t see her again for months or even years.
As a chronic patient, if I feel a medication is doing more harm than good (and presumably only I can possibly know this, right?) and I opt to stop taking it, chances are very high that I will be labeled non-compliant by the prescribing doctor. That label puts a very real strain on the doctor-patient relationship for reasons that I will assume are obvious.
As a professional patient, I’ve encountered a fair number of doctors in the last couple of years. Almost every one has regarded me as being some level of non-compliant. I don’t know that any of them would dare to write this on a patient’s chart, but it’s apparent in their body language, tone of voice, and willingness to listen.
(I just want to explain this whole non-compliance thing to help others understand why chronic patients might complain about medicines but keep taking them or complain about their doctors but keep returning to them. Starting over with a new doctor is often harder than putting up with a stubborn one.)
Anyway, back to the whole depression thing.
***
I cry. A lot. But I don’t consider myself depressed. I cry because of pain. I cry because of the embarrassment of living with IBS. I cry because I can’t drive, and I have to ask Dan to do all sorts of ridiculous things for me. I cry because my life has changed in ways I really, really don’t like.
But I don’t cry because the sky is blue or because someone left the milk out on the counter overnight.
I feel like my sadness isn’t a sign of an imbalance in my brain’s chemistry but a sign that it’s still working really well. Being chronically ill sucks all kinds of ass. I’m not suppressing “weak” emotions, and I’m not emotionally numb.
If I lost someone close to me, I’d cry right? People would look at me sideways if I didn’t cry. Well, I have lost someone close to me. ME!
But I can still laugh, crack jokes, appreciate a good homemade lasagna. And I still sing every time Simon & Garfunkel’s “Feelin’ Groovy” starts up on Google Play.
So I resisted the urge to raise my voice last Thursday and say, “If being sad about sad things makes you sure I’m depressed regardless of my input, you also have issues.”
But I didn’t, because I don’t have the energy to fight with my health care providers, and I don’t have the energy to find a new one.
I have talked a little bit about denial and grieving as it relates to my fibromyalgia diagnosis. This isn’t something I came up with on my own. It’s a thing that I first read about online.
Some people buy it; some people don’t. It makes sense to me, especially considering that the stages Jennifer Martin describes are not linear. Some people jump back and forth between the stages frequently.
*Raises Hand*
I made a little drawing of me with my trusty new walking cane to visually represent what the chronic illness grieving process looks like for me.
I’m climbing a mountain that was formed by all of the stages—some in larger quantities than others.
I’m off work for the next two weeks while I try to navigate my new disabled life and continue evaluating the effectiveness of the Gabapentin my doctor prescribed.
It’s not really a vacation at all, and it sucks that this is how I’m blowing my PTO. But a great deal more of this life is out of my control than I ever imagined would be when I was a young(er) adult. I’m learning to accept that, but not without a nice, ridiculous internal struggle first.
***
My itinerary for today included three things:
Call the vet to secure Boomer’s boarding reservation for later in the month.
Buy a mobility aid.
Rest.
Check, check, and check.
And, yes, I do have to trick myself into resting by pretending someone’s life depends on it. Huh. I guess that life would be mine, come to think of it.
***
We got my cane at Walmart. God bless them, the thing was right inside the door, and I got to test it out while we walked around, smelled the pumpkin spice candles, and gasped at the ungodly price of area rugs.
$11.87. That’s what this institutional black walking cane cost me. They had some more decorative stuff available, but nothing I saw (even online) suited me. I promised myself I’d pimp my ride with stickers and streamers and other accessories in the future. What mattered most was achieving upright stability.
Much as I love Dan, I hate hanging on his arm all the time. As an accessory, he just doesn’t coordinate with my independent streak.
After we paid, Dan handed the cane back to me. “Ready to go, Grandma?” he asked.
“I’m going to need you to take a ‘Get off my lawn’ pic of me waving my cane in the air when we get home,” I laughed.
“Consider it done.”
***
I am very slowly coming to terms with how I look, but it is not easy. If I had aged at a normal pace and gained weight gradually, it might not be so shocking to see pictures of myself or catch a glimpse in a mirror. But I currently look at myself and think, Who the hell is that? Doesn’t seem to matter that I’ve looked this way for two years now.
I am in the grieving stage of chronic illness. It’s harder than denial, which is probably why I hung out there so long.
