Welp, on Monday I go back to work. My medically induced vacation hasn’t been as helpful as I’d hoped. But if I’m obligated to find a bright side, I guess I’m glad I didn’t have to pretend to be OK for three weeks.
The amount of pretending and ignoring it takes to get through an 8-hour day when you’re struggling to lift a fork to your mouth or open a bottle of Gatorade is hard to explain. It’s crippling, it’s depressing, and it’s scary.
It was my worst flare up to date that prompted me to go back to my doctor on September 29 and spend a tearful 40 minutes confronting my disability.
In that first full week off, I learned that gabapentin is not a drug that’s going to get me back on my feet. The night terrors and lost sleep I experienced on that junk instead set me back weeks, maybe months.
I quit taking it after waking from one of many nightmares to find I couldn’t move my limbs for a few moments. Immediately after I stopped taking it, I went from being scared the drug was going to permanently break my brain to worrying that my doctor was going to react negatively to my “non-compliance.”
Without much to keep the flare from snowballing, I spent the second week in more pain than usual. I honestly don’t remember much about it, except that when I went back to the doctor for a med check she was OK with me stopping the gabapentin and wanted to me to up my nortriptyline dosage to 20 mg at bedtime. Getting restorative sleep needed to be the priority.
Holy shit, have I ever slept since that appointment. Here’s the sleep I logged using FibroMapp for the first 7 days at 20 mg:
The longest sleeps include daytime naps at moments when I just couldn’t keep my eyes open another second—in case you were wondering. On all 7 days, I spent my waking hours in bed, getting up only to go to the bathroom or take a shower or grab a Gatorade from the kitchen.
Dan cooked all my meals, washed and folded all the laundry, took care of the pets, shopped, rescued me from the bathtub, vacuumed, washed all the dishes, ran errands, picked up my prescriptions, met with the gutter guy, and plunged the toilets when our drains backed up. He even helped me get my shirt over my head because my arms were so weak I couldn’t lift them over my head.
So here I am at the end of my third week off of work, a little bummed and a lot miffed that I haven’t made any progress. I used up PTO and short-term disability and have nothing at all to show for it except a new walking cane, more medical bills, and a half-used bottle of gabapentin.
Getting out of bed is so hard. But I did it—for the second day in a row—and finally got to sit down with my primary care physician today. I’d hoped to write something better today, but the best I can do is keep everyone apprised of the basics:
I told my doctor that I had stopped taking Gabapentin and explained the nightmares that were trashing my already-trashy sleep. She made a note on my chart and said, “I’d have stopped taking that too.” She assured me I wasn’t imagining things and that although it was rare, other patients had reported nightmares and night terrors too.
At her suggestion, I’m going to try upping the nortriptyline again to 20 mg at bedtime to see if I can get over the slump of daytime sedation it causes. The hope is that my body will adjust. Because I don’t seem to suffer worse side effects, I’m cool with giving it another go. It could help with the fibro pain.
Since sleep problems keep coming up, she’s referred me to a sleep doctor. I have to have an initial consult first, but it seems likely that I’ll be completing a sleep study. “You know they torture people by depriving them of sleep, right?” she said. “If nothing else, we need to get you sleeping again or your health will never improve.”
Related to the sleep, she ordered tests for my iron levels and a couple of other things. I honestly can’t remember what the other stuff is right now. Since I’ve been struggling with burning, tingling, and crawling sensations in my feet and legs, low iron could be playing a role. We were surprised to look through my records and see that my iron hadn’t been tested yet.
All in all, it was a good visit. Her suggestions fell in step with The Fibro Manual that I’ve been reading. That is, prioritizing sleep, checking out iron levels, ruling out or treating things like restless leg or apnea that could be keeping me from getting the sleep I need.
“Just so you know, Dan, I read that quitting Gabapentin can be rough. Withdrawal symptoms include suicidal thoughts. So, keep an eye on me.” He paused in the doorway on his way to the kitchen.
“Okay, I got your back,” Dan said. “Need anything while I’m up?”
“Yeah, could you bring me a knife?”
The number of nights I’ve had bad dreams in the last nine days is exactly equal to the number of times I’ve taken Gabapentin before bed. At first, the bad dreams were pretty typical. But in the wee hours on Saturday morning, I woke up from a bad dream and couldn’t move anything. Not my arms, not my legs, not my fingers, not my toes.
The paralysis only lasted a few short seconds, but that didn’t really minimize how scary it was for me. Much scarier than the bad dream I’d just had. (My parents were throwing me a birthday party, but no one came and my parents had looks of pity on their faces. I know, but trust me: It was brutal for someone who wants to be honest about her struggles but also not be pitied.)
Sleep does not come naturally to me anymore, probably because fibromyalgia is characterized by an always-on stress response. If something I do or some medicine I take further impedes my body’s ability to get restorative rest, I drop it fast.
While Dan was helping me walk down the hallway that afternoon, I announced, “I’m not taking Gabapentin anymore.” I didn’t take it before bed Saturday evening.
Sunday morning, about 2 am, I had what I’m calling a night terror. I’m assuming as a result of Gabapentin withdrawal.
I dreamed that I was awaking from sleep in the guest room because inanimate objects in my home were attacking me. A lamp. The shower head. A paper towel.
I screamed and screamed and screamed for Dan to come help me. But it was a nightmare, so naturally I couldn’t scream loud enough.
I kicked and flailed and screamed some more, until Dan finally came into the room to comfort me.
Only he wasn’t actually there; I had begun another dream. The Inception-level dream within a dream shit was already a few layers deep at that point, and the more I tried to wake myself up, the further down the rabbit hole I fell.
I did finally wake up for real, sweating and clenching my chest. I was breathing, but it felt like I was suffocating.
I closed my eyes; I had only been asleep for two hours and was physically exhausted. Two hours was no where near enough rest for the night. But as soon as my eyelids fell, the panic swallowed me again. I opened my eyes, and reminded myself that it was just a bad dream. My eyelids got heavy again; the panic swallowed me again.
That’s about enough of that.
I got up and went to the master bedroom to find Boomer snoring soundly on my side of the bed.
“Something wrong?” Dan asked. My stumbling into walls had apparently roused him from sleep.
“Just another bad dream. It was so…”
But before I could complete the sentence Dan was snoring again. I curled up in the top left corner of the bed and closed my eyes…only to be swallowed by the panic. Again.
I got up and went to the living room, turned on an accent lamp, played Farm Heroes Saga to keep myself awake, and vowed to wait it out.
Being chronically sick is scary. Of all the ways I react in response to fibromyalgia, fear is the thing that takes up the most space in my brain and the thing I talk about the least.
When a flare begins, I fear it won’t end this time.
I fear falling because I know I can’t get up on my own.
I am terrified of addiction to drugs like Gabapentin (even after taking it for just nine days!) and am scared of the inevitable withdrawal symptoms I will face when I decide to quit taking it.
I am scared of drug side effects.
I get scared that my fibro fog will lead to big mistakes with severe consequences.
I worry that I’ll collect more symptoms. I worry that those symptoms are a sign that something else is wrong. I worry that my health care providers will miss it—or worse, won’t care. I worry that I’m misdiagnosed. I’m scared that a misdiagnosis would mean I’m not treating something bad, and that the longer I go without treating the real thing the less treatable I become.
I fear that spending to much time being afraid will make me sicker.
Dan handed me the knife, and I started cutting a gummy into quarters. I’m off of Gabapentin and using small doses of medical cannabis to keep the proverbial elephant off my chest and sleep without being terrorized while my body adjusts.
Medical marijuana might be the only thing I don’t fear right now. I want to hug it.
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’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.
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.