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 really fibromyalgia.
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.