mental health

A Million Little Pills

“Imagine smiling after a slap in the face. Then think of doing it twenty-four hours a day.”

~Mark Zusak, The Book Thief

First and foremost, let me state that I don’t deny the existence of an opioid crisis. I won’t even deny the fact that illegal drug use runs rampant (as my state prepares to legalize marijuana use later this year). Is it a problem? Of course it is. Do I think it’s something that will ever get solved or even shaved down by government regulation? Not a chance. But I’m sure officials pat themselves on the back and raise glasses of champagne that they’re making a difference in the world. However, this isn’t a post about drug problems – not really.

It’s about the dominos those regulations have tumbled.

People with chronic pain fall into a category known as “invisible illnesses.” We walk around looking perfectly normal to everyone else. Because, unfortunately, pain doesn’t manifest on the skin. And it’s a different experience for each individual. Some people tolerate horrific injuries without a problem (and I envy them). Others? They learn to cope with the fact it feels like a steamroller ran over them fifteen times during the night. On a GOOD day, I walk around with a pain level hovering between 6-7 on that silly chart they hang in the ER. On a bad day? It goes up to 14 – and nurses roll their eyes when I tell them. They consider it an exaggeration, despite the fact I’m trying to convey the truth.

Fibromyalgia doesn’t process pain signals properly. It’s a centralized pain state, and my nerves can’t tell the difference between a stubbed toe and a severed limb. (I know, it sounds silly, but if you spent a day in my body? You’d get it) And trying to convey how I feel to ANYONE? Is frustrating. Even medical professionals get skeptical at times. And I’m not the only person in this situation. Everyone with a chronic pain diagnosis? They’ve heard these same words, particularly since the opioid crisis:

“Have you tried Advil/Tylenol?”

And all you can do is sit there and stare at them in disbelief. Really? Advil? Tylenol? It’s the equivalent of being told to rub some mud on it or walk it off. (And don’t get me started on that whole “exercise makes pain better nonsense”) Because when the new regulations went into place, they slammed the door on medications that helped us EXIST. And no one stopped to think about the consequence of that decision. They didn’t pause and ask if they’d affect someone OTHER than the drug addicts they wanted to target. No voice went up to say, “We need to make sure we have a plan in place for THESE people.” And no medications have emerged to help in the meantime. We’ve had no advocates to stand up for us.

“Have you tried Advil/Tylenol?”

Currently, I’m struggling with an “old friend.” And I go into surgery tomorrow to finally remove it. In the past? My doctor prescribed Percocet to help me sit, stand, and walk while waiting to get me into the OR. He (hell EVERYONE) could see the level of pain I was in. And this time? It’s no different. But the regulations? They tightened. So he uttered that sentence. As if I haven’t already been popping Advil AND Tylenol like candy. And when he asked if they helped, I admitted they weren’t. His response? “You can try a heating pad.”

Yeah, I’ve tried that, too. And willow bark. And chamomile. And soaking in a tub with Epsom salt and eucalyptus. I HAVEN’T tried stabbing a blade into my body to see if that would work, but I’ve considered it. Because that’s what pain makes you want to do. It squirms into your brain and takes over every thought. And when a medical professional hands you the equivalent of a Band-Aid for a hemorrhage? You collapse into a dark place.

“Have you tried Advil/Tylenol?”

This is where people with chronic pain end up. Depressed. Miserable. And – most of the time – refusing to seek help. What help IS there? The medical community has turned their back on us. They’re too busy congratulating themselves on “beating” the drug addicts. Instead, they leave their patients walking on knives, moving hands encased in thorns, and breathing with lungs wreathed in fire. And they shrug when we venture to tell them we’re struggling. Because attempting to DO something? It would mean they made a mistake. And they’re not willing to do that.

I’m one of the biggest advocates AGAINST drugs. I oppose marijuana. But this time? I broke down and looked into CBD. I’ve been in that much pain. Unfortunately, it would interact with my migraine medication, so it’s not an option. That’s what having NO options does to people, though. It drives them to a level of desperation they’d never consider. To a point where I’m removing an organ and agreeing to put myself into menopause – early menopause. Simply because I can’t handle this pain showing up every few months. And I can’t shovel down handfuls of Advil and Tylenol and wait for my liver to decide it’s had enough.

“Have you tried Advil/Tylenol?”

Every day, I hope for someone to puzzle out how to manage fibro. How to bring relief to everyone with chronic pain. But at the same time? I wish pain were visible to the world. If they could SEE what we feel, would they behave differently? Would they work harder to find solutions and ease what we’re going through? If we looked the way we felt, would people take us seriously? I don’t necessarily WANT to look the way I feel, but if it made a difference? As I stare down at the liqui-gels and quick-dissolve capsules in my hand that make up part of my breakfast – and snacks – and lunch – and dinner, I find myself closing my eyes and wondering if I’d hear something different if the doctors and nurses could SEE my pain level.

“Have you tried Advil/Tylenol?”

mental health

Real? Not Real?

Pain medications
Photo from Pixabay on Pexels

Allow me to open with a controversial statement: Pain is a nebulous concept. Why? Because if you go through life and only feel pain on rare occasions, it has one meaning for you. Those stupid charts in doctor’s offices with the grimacing faces? They actually have meaning for you. You can rate your pain on a scale of 1-10 without a problem. People take your yelps and moans seriously. You get to live in a special world – and you don’t even realize it.

Then there’s those of us with chronic pain.

We don’t experience moments WITHOUT pain. Daily existence places us in the middle to the high end of that stupid scale. Getting out of bed? Yeah, that’s a 6. Showering? On a good day, we might get away with a 5; bad days chalk us up to an 8 and require a rest afterward. When we cry out or moan or wince, we get the side-eye. Doctors and nurses sigh when they see us. When we tell them our pain eclipses that damn chart, they roll their eyes and stamp “hypochondriac” on our chart. We’re left writhing on our beds, dismissed as fakers or drug addicts. If we dare to tell them the medications aren’t working, they frown and tell us we need a rehab program.

Thus, “pain” has no true concept – not one that applies across the board. Even in this age of “advanced” medicine, it’s one of the things that no one agrees on and people fail to treat appropriately. And if you fight through chronic pain, it starts to worm its way into your mental health. After all, how many times can you hear someone dismiss your concerns before you start to believe them? Before your mind twists around and you accept that you’re wrong? Or crazy?

Pain does terrible things to the mind.

Some of my deepest depressions have followed horrific flares. Or not even flares – just intense episodes of pain that doctors decided weren’t important. It’s altered my mindset completely. I now avoid trips to the doctor until I’m in dire straights. Following a laparoscopic procedure last year, I developed a seroma at one of the incision sites. I didn’t allow my husband to take me to the ER until I could barely stand up straight and coughing almost made me black out. (And, to be fair, I protested even then. He just hauled me out to the car and refused to listen) I ended up needing surgery to drain it and earned an open wound healing for the next TWO MONTHS.

But I convinced myself it was all in my head – like doctors always tell me. There was nothing wrong, and it was my fibro flare, nothing more. I didn’t want to go the ER and end up embarrassed – AGAIN. It’s miserable describing an intense pain, only to have a doctor dismiss you as a hypochondriac. And trying to insist that you KNOW something’s wrong only makes it worse. Better to skip the visit entirely and pretend it’ll go away eventually. At least, that’s what my mind tells me.

It’s why I’ve avoided telling a doctor about the worsening pain in my lower back – for the past two years. My nephrologist yawned and told me the cyst would go away, that there was no way it could cause me pain. (And, yes, the doctor knows I have fibromyalgia, and, thus, feel pain differently than normal people) But I don’t want to feel that small and idiotic again. So I suck it up and tell myself (daily) that the pain will go away.

It’s how these “medical professionals” have conditioned me.

I read about these fantastic advances in medicine all the time. Broken barriers, miracles, cures. But pain? No one seems interested in advancing the care given there. Oh, they were quick to embargo pain MEDICATION – slandering anyone taking such medications as a drug addict. They didn’t stop to think of chronic pain sufferers when they did so. Then again, they never think of us. We’re lumped into a category of hypochondriacs, drug addicts, and liars.

And then they act shocked when chronic pain patients commit suicide. It’s a twisted cycle that breaks down the mind a little more each day. It makes you wonder if one of these brilliant scientific minds needs to experience it themselves before we’ll see a breakthrough in how we’re treated.

mental health

The Constant Battle

“You may have to fight a battle more than once.”

~Margaret Thatcher

Chronic illness sucks. Actually, let me clarify that: chronic illness SUCKS! When you have a chronic illness that brings pain along for funsies…suffice it to say there aren’t enough expletives available in every language in the known universe. Don’t get me wrong, we all get good days. We get days without pain (ha, just kidding – we get days with manageable pain). We get days where we get to function like semi-normal human beings. Those are usually days when we overdo it in a heady rush to catch up on everything we’ve slacked on during the bad days.

Because the bad days…

Pain takes a big toll on mental health. Not just for people with chronic illness, but anyone. Nerves screaming for your brain’s attention diverts blood flow and resources away from – well, pretty much everything. (I’m not making this up, either. This is genuine science) There’s only so much the brain is capable of handling at one time. When pain demands too much focus, that beautiful machine sacrifices other functions to try to cope with the raw nerves. Guess what that leads to?

The dreaded FOG!

Doesn’t matter how well-educated you are, how fluent your usual vocabulary. You are suddenly reduced to a complete and utter idjit. You lose entire sections of the dictionary. Not just the big words, either. I’ve stared at a table and come up with nothing more than, “flat thingy.” (Oh, yeah, people look at you with respect then!) Sentences trail off to nowhere. Focus? Forget it. Your poor brain doesn’t have time to help you concentrate. You stare at computer screens while clocks tick by, wondering what you’re supposed to be doing. You wander into rooms with no clue why (assuming you remember what the room is in the first place).

And you’re mental health tanks behind it. You KNOW you’re intelligent. You KNOW you’re competent. You KNOW you can write and speak and read at more than a kindergarten level! But you’re sure as hell not demonstrating that fact! So you hide away from friends and family. You avoid speaking aloud lest some brainless phrase escape your lips. You frantically run documents through spellcheck and Grammarly to save yourself from looking stupid. You feel less than a milometer tall.

All from a physical reaction.

Pain is a powerful thing. It really can sabotage your brain that easily. I don’t want to say those of us with chronic illness are used to it, because we’re not. We hate sputtering through our flares. We hate canceling plans to avoid looking like certifiable morons. But we at least know it comes with our diagnoses. Someone experiencing nexus-level pain for the first time? Yeah, no clue what they’re in store for.

Spoon theory works for chronic illness when measuring physical activity. But it fails when we try to account for our mental well-being. How many spoons to speak like an educated person? How many to write a thought-out article? How many to describe a room? How many to understand a Dad joke? Who freaking knows?! It never comes up in all of those cute memes displayed around social media. But it matters. Our mental health and well-being is just as important as our physical capabilities.

Yes, I want to know what I’m going to accomplish each day. (And, yes, I overspend my spoons pretty much every day) But I also want to know how much fog I’m going to cope with. I want to know if I’m going to sound like a moron with a new client. I want to know if I’m going to have a sentence fade out when talking with my fiance’ at the end of the day. I want to know if I’m going to just curl into a ball mid-way. Not just because the pain is getting to me, but because I feel like my brain is failing on me.

How many spoons to feel like a real person again? That’s what I want to know.

Uncategorized

The Tenth Circle of Hell

Doctor: You have to learn to listen to your body.  Me: Oh, we're not on speaking terms.

Picture, if you will, a person who is completely healthy: they have no physical deformities, they have no speech impediments, they have multiple college degrees and can speak and write eloquently, they have no hearing difficulties (selective hearing doesn’t count), all of their original limbs are present in their original form, and they’ve never seen the inside of an Oncology office in their lives. Enviable, right? Possibly also imaginary?

Well, no, because appearances are deceiving. I just described myself from a stranger or even an acquaintance’s point of view. The truth is, though, that anyone who knows me, especially anyone in the medical field, would never use the word “healthy” in a list of adjectives – and I’ll even take my mental faculties off the table for this post. I, like a large percentage of the population, suffer from an invisible illness: an insidious monster that does its worst work under the surface where the only one who knows what’s going on is the person suffering the invasion. To the casual eye, we look like everyone else; we even look HEALTHY, which is the real scam. Meanwhile, our own bodies are turning against us in sick, twisted, and malicious ways. And the absolute worst part? We spend every day fighting and putting on a show to continue to appear normal.

I have fibromyalgia.

Some invisible illnesses out there are “lucky” (multiple sclerosis, Lyme disease): the cause is known; fibro is still bouncing around in the dark taunting researchers. Originally, patients were told they were crazy (true story: my mother is an example), that they were making their symptoms up in order to get attention, get pain medications, etc. (You’d think human medicine would find better excuses for people to have after hundreds of years, but there you go.) Finally, some doctors/researchers stepped up, acknowledged the condition was real, and they decided it was a problem in the musculature (hence its name). Then they changed their minds and decided it resided in the nerves – really great considering you have those throughout your entire body. Now, the current theory is that the bugger exists inside of your blood vessels – and we thought the previous theory was a blow! Oh, it sounds great, all of this research, there’s a problem: patients are bounced around from quack therapy to quack therapy in the meantime. My mother almost died being treated by a complete idiot of a doctor who didn’t understand the illness. They’re essentially throwing darts at a dartboard, hoping one might stick – not sound medical therapy (wait, didn’t I use that line in my talk about depression?). I want to stay angry at these medical professionals – and I can at the idiots, that’s easy – but it’s difficult. Why?

Because fibro SUCKS!

Let me try to illuminate what it’s like to be a fibro patient for you. I’m currently in the middle of a flare (which is why this post is late, actually), brought on by a combination of stress, a change in the weather, overdoing things in the middle of a flare, and possibly alignment of the stars (seriously – fibro is that weird). I have overheated electric wires extending down three of the fingers on my left hand; my right forearm is so fragile that the lightest breeze could fracture it into pieces; both of my legs have been boiled just shy of third degree burns so that even a cat whisker touching them makes me want to scream…which is at least an improvement over last night when they were repeatedly run over by rush hour traffic and then beaten for an hour with a sledgehammer. At least, that is the level of pain my brain is communicating to me because it doesn’t process pain appropriately (wherever the signals are coming from: nerve or blood vessel). I’m having trouble walking today, and just balancing my laptop of my lap is taking an effort of sheer will right now. I also fell asleep for two hours after waking up…probably because trying to sleep last night was an ordeal (remember the description of my leg pain from last night). I admit that this is a flare, so this is pretty bad, but I have some level of pain on a daily basis…and, believe it or not, it can also get worse.

Nothing helps, though.

Oh, I tried the silly fibro medication on the market – it made me sick as hell (and it didn’t work, anyway). I have tried soaks with Epson salt (which is never relaxing as it involves shooing cats away from the tub since they try to drink it), but they don’t help. Meditation is a joke (sorry for believers, but it is). This is the reality for so many people with invisible illnesses: no cure, no solution, and a lot of unsolicited advice from people who don’t share the same battle. Is it any wonder that we push ourselves to behave and appear as normal as possible? Believe me, I’d rather grit my teeth and force myself to walk across the room as smooth as possible than listen to one more person tell me eating a Keto diet will “fix me.”

The reality is that what we actually want is understanding. We would like people to understand when we’re having our flare days – and the fact that, when our bodies our under that much pain, our brains don’t always work so well (your mind can only process so much and still function properly). We would like people to understand that OF COURSE we look normal on the outside! Our battle is occurring on the INSIDE! If we actually looked the way we felt, EVERYONE would believe in the zombie apocalypse. We would like people to understand that, yes, some of us register for and need those disability placards. There are people out there that have difficulty walking more than ten steps without excruciating pain, or that need to walk slowly but refuse to take wheelchairs from people that genuinely need them (remember what I said above about appearance before you open your mouth and complain that you had to park a little further away).

I don’t want to belittle cancer because it’s horrible, and it has touched my own family (my sister is a breast cancer survivor), but people with cancer have options and therapies and hope. People with invisible illnesses…we don’t. So, before someone opens their mouth to ridicule a person who isn’t sporting a freshly-shaved head or puffy cheeks, maybe they should consider that.