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.
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.
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.
So far, I’ve received three questions about medical cannabis via my contact form. All three were variations on the same theme: Does medical marijuana make you high? I’m answering this from a personal perspective, just to be clear. What follows is NOT an answer to Does medical marijuana make one high? or Will medical marijuana make me high?
TL;DR answer: Sometimes.
The first three times I took medical cannabis, I used THC-infused Indica gummies. Each time I took one half of a gummy with food before bed, and I did not get high. The fourth time I took half a gummy on an empty stomach while ill (and probably pretty dehydrated) and I got high as fuck.
A short time ago, Dan and I traveled to Indiana for a funeral. I was sad, anxious about traveling with chronic pain and IBS, and (as usual) ignoring my body’s attempts to warn me to be kind to myself.
We were on the road at dinner time, which meant stopping for a bite along the way. I had a baked potato and a vanilla Frosty from Wendy’s. Maybe not the healthiest meal, nutritionally speaking. But at the time all I was hoping for was “not spicy” and “hopefully not tainted.”
A baked potato and vanilla shake seemed like my best options on a strip of road where burgers, onion rings, tacos, roast beef, chili, fried chicken, and 12-hour-old wilted salads were my other options.
We met up with family at the funeral home. I hugged my parents and extended family and took a seat at the back of the room, as close to the restroom as possible while still being present for the service.
Aside from my usual aches and pains and moderate vertigo when standing up, I made it through the service without incident. I hobbled down a few stairs to the parking lot, and we left for home.
The cramping didn’t start until we had been on the road home for about an hour. “Dan, you are officially being warned. Take the next exit where I can access a public restroom.” I clutched my gut and loosened my seat belt.
I prayed to no one in particular that I would make it. “Also, pull the car right up to the fucking door please.”
Dan obliged. I made it. As far as anyone else knew, I was just a regular traveler taking a break to answer the gentle (ha!) calls of nature.
(Funny story: when my IBS was at its absolute worst, I’d run to the bathroom at home, slam the door shut, and sing “Looks like we made it…” at the top of my lungs. A signal to Dan that things were going to be OK—not good, but OK—and a reminder to myself to laugh.)
We were back on the interstate. Home was less than an hour away. I sighed, relieved.
Three blocks from our house, I cried out in pain. The cramps were back. I took rhythmic breaths through clenched teeth. “I need to get home. Now.”
Dan gave the car a little more gas. We were doing 45 mph on a 25 mph street, coming up on a red light.
Turn green. Turn green. Turn green. FUCKING TURN GREEN ALREADY.
“Dammit!” I yelled as Dan brought the car to a halt at the intersection. He was doing the best he could.
Hee hee. Hoo Hoo. Hee hee. Hoo hoo.
We were moving again, but there was a four-way stop a few hundred feet in front of us. Cars were queued, waiting for their turn. There was no way Dan could just roll through this one.
“I’m not going to make it,” I said.
We were literally a block from home, and I started crying.
I showered and cleaned up on my own. The only pair of dress pants I owned went in a garbage bag. I put on my pajamas and crawled into bed. Everything hurt, I was deeply embarrassed, and I was emotionally spent. I reached for the medical marijuana, knowing it would dull the sharp edges of my pain, calm my gut, and help me sleep—just like the first three times I had taken it.
Thirty minutes later I reached for the glass of water on the table beside me. “Why is my arm doing that?” I giggled.
“Doing what?” Dan asked.
“Look. I have a Go-Go-Gadget arm. It’s reaching too far and I can’t pick up the glass.”
“Oh my god. You are so stoned right now.”
“That is so cool,” I said. “When I close my eyes the things I think in my brain are cartoons!”
“What’s so funny now?” Dan asked.
“There are strings around my lips and in my cheeks. Someone is pulling them! I can’t make my face unsmile! Turn on Bob Ross!”
“Dan? I’m having really intense deja vu. Also, how many Modern Family episodes are they showing tonight? Jesus.”
“This is still the first one.”
“I know why hippies are hippies. If we give mean people weed, they can love everyone too. Like I do.”
“Take a look! It’s in a book! A reading rainboooooooww!”
“Why can’t everyone who’s sick have weed? I want everyone to have weed. I love weed.”
“Maybe one day.”
NOTE: I have chosen not to take medical cannabis while I try to evaluate the effectiveness of the gabapentin the doctor just put me on. I still have a few posts in the queue, however.
While Martkin Shkreli and Heather Bresch continue to make headlines, regular people struggle. You don’t need to buy Daraprim or an EpiPen to know that the cost of drugs, and healthcare in general, is prohibitive for too many Americans.
So, yes, let’s call out individuals for making disgusting salaries.
But let’s also remember that the system allows it, and it needs to be changed. Especially for people with chronic illness.
But we don’t just pay out the ass for daily meds, medical testing, and routine doctor visits. We also pay more than able-bodied people on items often taken for granted.
But for someone with RA, for example, a peeled orange can be a healthy snack alternative. That it costs a chronically ill person $6 to acquire shows what sacrifices patients have to make to eat healthier.
If you’re generally healthy, you might grab this once in a rush to find something convenient on your way to soccer practice and not give it another thought. If you’re a fellow chronic, you would probably wince at the price tag.
What if you wanted to eat an orange every day? Or even once a week? It’s cost-prohibitive, that’s what.
2. Utility Bills
Fibromyalgia causes a host of problems for me, including extreme temperature sensitivity. That means keeping the house at a steady 70 °F throughout the summer. And believe me, I pay for that comfort when I get my Ameren Bill every month.
A small jump of just two degrees might save me some money on my bill and be better for the environment, but at what cost to my health? Sweating, headaches, increased blood pressure, and the inability to sleep.
Guess which option I’m going to choose as a chronic patient?
Yes, pillows. The good ones cost insane amounts of money; the affordable ones either cause more pain or fall flat so quickly you have to keep spending money to replace them.
It’s not a frivolous concern either. Sleep is important for everyone, and patients with chronic illnesses are no exception. Insomnia, poor sleep, and not enough sleep can intensify pain and impair the body’s ability to heal and restore itself.
4. Toilet Paper
I’m not going to get too graphic, but can we have a moment of silence for all the chronics who suffer from ulcerative colitis, Crohn’s, IBS, and similar diseases and conditions?
If you’re going that frequently, that cheap institutional toilet paper is NOT an option. Don’t you dare suggest it.
5. New Clothes
And I’m not talking about getting the “essentials” from Vera Wang’s new Fall line. I’m talking about replacing clothes with items that fit our ever-changing sizes. (Weight loss and weight gain are prevalent symptoms, sometimes caused by chronic illnesses themselves, and sometimes a product of prescription drug side effects.)
As a person’s ability to dress herself deteriorates, there’s also a need to switch to clothes that are easier to put on. I’m talking front-closing bras, elastic-waisted dress pants, and shoes without laces, straps, or buckles.
This really just scratches the surface of the way patients with chronic conditions pay more for day-to-day living. Just something I hope more able-bodied people will consider as they try to understand what it’s like to be someone who will never again not be sick.
One of the truly suck-ass things about having fibromyalgia and other chronic-pain-causing illnesses is that they increase your risk of unwittingly displaying pinched facial expressions. I catch myself doing this all the time.
I’ll lie down at night and realize that instead of letting my eyelids gently fall, I’m squinting with my eyes already forced shut — that’s like double squinting.
Anyway, it’s bad because I’m giving myself headaches or exacerbating existing headaches on top of whatever pain I’m feeling in the rest of my body.
One of the most effective tools I have for combating RPF is meditation. But if you’ve ever tried meditating (even while healthy) you know it sounds a whole lot easier in theory than it is to actually practice.
A key concept of using meditation for pain management is leaning in or accepting or welcoming pain. I know. It sounds insane, but the idea is that when we fight or react to our chronic pain, we actually intensify the pain sensations. I 100% and wholeheartedly subscribe to this theory.
But let my give the pain-free folks out there a little analogy, lest someone start saying nonchalantly to The Pained “Have you tried meditating?”
Imagine that you’re experiencing pain because you burned your finger on the inside of a 450-degree oven door. The laws of meditation for pain relief state that in order to free your finger from the pain, you need to lean in, accept, or welcome the pain. It’s a bit like holding your finger to the oven door instead of pulling away. It’s next to impossible to do because it’s not fucking natural.
You see, the body instinctively winces, pinches, and fights to pull away from all kinds of pain. And when those reflexes become chronic because the pain is chronic, plenty of muscles tense and flex. And then the muscles just fucking stay that way because the pain is internal and there’s nothing to jerk away from, causing more pain and extreme fatigue. (Don’t believe me? Try flexing your bicep for two years without a break and let me know how things go for you. Next try flexing every muscle in your body for two years.)
I’m not trying to be Debbie Downer about the whole thing though. As I said, meditation is one of the most effective tools I can currently access for pain relief. If you’re a fellow sufferer, I recommend guided meditation. Someone gently whispering in your ear to exhale, relax your toes, or sink into your bed makes for a pleasant distraction that kind of tricks you into becoming more accepting of the primary source of your pain. The more you meditate, the better.
I recommend the Calm app, and nobody paid me to say so. You can also try Calm in your browser.