I don’t know if you guys noticed, but I didn’t publish anything here yesterday. That’s because it was a hard day.
I had three things on my to-do list again: complete my absentee ballot, get outside and walk in the backyard, and trim my nails. (Is it absurd that I have to make a list for such mundane things? Absolutely. Is it necessary? Yes.)
For every simple thing I got done, the universe rewarded me with unwarranted complications. First the water company called me to tell me that if I didn’t pay up they’d be disconnecting our service. Then my feelings were hurt by something Dan said. And finally the plumbing backed up while I was taking my shower.
***
About that first complication—somehow I missed paying the last two water bills.
“Hi, I had a message to call you guys. I’m not sure what it’s about.”
“Let me just pull up your account information. One moment.” Dan and I were listening to the Illinois American Water customer service rep on speaker phone. “It looks like your account is past due. We sent out a disconnect notice in the mail.”
“Huh,” I said. “Well, I can pay what we owe, but I haven’t seen the letter.”
“Oh, well, yeah… It was sent out yesterday, so you might not have it yet. Sometimes we call before it gets there.” I rolled my eyes and made a slightly obscene jerking motion as she backtracked and apologized. Dan laughed quietly.
We settled up for $153.33, and I hung up the phone.
***
Now, money is tight for us, but we can still pay our water bill. I am not yet to the point where I have to decide which utility I’m going to pay this month in order to keep someone from disconnecting us.
“I think I’m losing my mind,” I told Dan after the call was finished. “I don’t know how I forgot to pay them. Twice.”
Also, a few days ago, I accidentally paid $75.00 on my zero-balance bank credit card when I meant to transfer the money from a reserve account to my checking account.
Dan tried to help. “What can I do?” he asked.
“Short of taking over all the money stuff? I really don’t know.”
“What about reminders, or some kind of checklist?” he suggested.
“Yeah, that’s already in place. Online billing. Paperless alerts. Email reminders. I think I’m just losing my mind.” The brain fog—more specifically in my case fibro fog—is real and it’s kind of scary. It’s the reason why I haven’t driven in over a year.
“We need to get you to eat a vegetable,” Dan said, unwittingly striking one of my dysfunctional nerves.
“This,” I said weakly gesturing at my pajama-covered body and walking cane, “was not caused by my diet, and it cannot be fixed by my diet.”
He assured me he didn’t mean it like that, and I believe he didn’t, but I was riled. “Well that’s how I took it! Think about it next time!”
***
One of many reasons chronic patients are upset by suggestions to eat right and exercise is that both imply we brought a health crisis on ourselves because we didn’t have the willpower to stop it.
Like that ice cream cone I ate on October 16, 2014 for dessert was the straw that broke the camel’s back.
If only I’d eaten a plate of broccoli for dessert instead.
Is everyone who eats “worse” than us sick? Is everyone who eats “better” than us healthy? Don’t fucking think so.
We don’t care that your Great Aunt Ginny cut out all wheat and feels like she’s 19 again. We are not your Great Aunt Ginny. And we resent that you think we haven’t already tried everything to make our illness go away.
Take me, for instance. I’ve tried every healing diet known to man in the last couple of years. Low FODMAP, gluten-free, no HFCS, green smoothies…yada, yada, yada.
Not only did all of them fail to heal me, most of them didn’t even alleviate a single symptom for longer than 7 to 10 days. Plus any strict adherence to a health-food-only diet stripped me of one of the few things I can still enjoy in this life—eating socially.
I might be able to shrug off these suggestions more easily if I could whip out a blood test or MRI result or something—anything—that validates my disability. But I am almost perfectly fine on paper. As a result I’m ridiculously touchy—whether someone outright accuses me of Sabotage by Diet™ or absentmindedly makes a suggestion founded on a similar premise.
***
“You realize we eat almost exactly the same things, right? I just pick mushrooms out of your homemade stroganoff and refuse to let you defile my serving of macaroni and cheese by mixing in peas.”
There’s no denying I’m pickier than Dan. On the surface, I can see how it might look like I’m averse to eating foods that are good for me. But on closer inspection, that’s not what’s going on.
I made him feel bad. He apologized, and not in the way six-year-old kids do when their parents make them. It was genuine, and I instantly forgave him (even if I did need a few minutes alone to chill out).
***
This morning when I woke up there was a carrot cake on the counter.
Every night for the last week I had mentioned how I really, really wanted carrot cake. We were waiting for the next paycheck to do any official grocery shopping, though.
Well, today was payday, and Dan went out to get groceries, and he put them all away before I even rolled out of bed this morning.
“You better eat your vegetables,” he winked.
***
One of my favorite internet memes is the one that reminds us to be kind to everyone we meet, because we have no idea what battle they might be facing. In the case of patients with chronic illnesses (and especially invisible chronic illnesses), I think it’s safe to assume they are fighting 9 or 10 battles at once—battles you don’t know anything about.
Not that being a patient with a chronic illness gets us off the hook for reciprocating kindness or forgiving people that hurt our feelings.
I guess what I’m trying to say is that there’s room for all of us to dole out a little more grace. And carrot cake.
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 with chronic illness 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.
I’ve been on 100 mg daily for three days. So far I am not impressed, but if I could give Cymbalta six months, I can give this a few weeks. I will continue taking it.
This post might be a bit boring; it’s mostly just to help me remember what I’m experiencing (and possibly help someone else who goes on it for the first time).
The extreme burning sensations I was experiencing in my feet and legs have gone from about a 10 to about a 2 overall. Intensity is still occasionally higher.
I feel slightly less pain when I don’t move, but if anything touches me the pain is actually more intense than before I started taking it. (For example, was playing with Boomer and his happy tail hit my face. It felt like I’d been smacked really hard. The intensity of the pain kind of stunned me and lingered way longer than it should have.)
I get weird sensations all the time anyway, but in the past three days I seem to be cycling through those sensations faster. They include: pain, burning, tinging, pins and needles (like right now, my left leg feels like it’s asleep).
The dizziness is out of control. I can’t walk around much, and sometimes feel like the room is spinning even when I’m sitting still. It is worse in the morning and gets better as the day goes on. (I’m guessing because I take gabapentin at night before bed.)
I feel extremely weak. Cannot open jars or bottles. Very unsteady of my feet. Last night I was eating a bowl of ice cream while we watched Luke Cage on Netflix, and I had to keep setting the bowl down because my arm was just too tired to hold it the whole time.
My hands hurt and are stiff and slightly swollen. Dexterity sucks.
UPDATE 12:05 pm: Feet are burning intensely again. Hooray.
