Building Walls: Managing Pain

Building Walls: Managing Pain

You are a builder. Sometimes, you are careful in your layout and design, carefully lining each detail up, making sure everything is strong and secure. Sometimes, you just slap everything together and hope for the best. But everyday, as soon as you wake up, you build. You build a wall inside your own head. You build a wall to hold it back. You build a wall because if the pain isn’t behind it, the rest of your brain can’t function in front of it.

Sometimes you are able to build the wall near the back of your head, with lots of room for you to think up front. Those are the mostly-good days and the mostly-good days are as good as the days get, for you. They are the smile-almost-reaches-your-eyes days. The go outside-even-though-it-hurts days. The days that are so much better than any other days that it’s important to remember them, especially because they only come once in a while, because forgetting them has gotten you locked up in hospitals that don’t allow you to have shoelaces or razor blades. You must enjoy every moment of the mostly-good days before they are gone, or before they are taken away.

Sometimes you have to build the wall in the middle of your head, because the pain and your ability to think and function are fighting for half of everything you are, evenly matched. Those are the mostly-bad-but-normal-for-you days. The smile-anyway-because-pain-is-contagious-and-you-don’t-want-to-ruin-everyone-else’s-day days. The fake-it-til-you-make-it days. The days that you’ve learned to live with, because it’s your life and life is not always sunshine and rainbows. On these days you try to remind yourself of the mostly-good days. It’s the possibility of the mostly-good day you need to remember, not the day itself, because hope is the essence of maintaining a purpose-filled life but longing and pining and whining will be the destruction of your carefully controlled reality. So you must remember it is possible but not wish for it to happen, because that is when the breaking happens.

Sometimes you are forced to build the wall in the front of your head, with barely any room for thinking or functioning, because the pain is demanding every tiny bit of space there is to dominate your body. Those are the bad days, the precursors to the worst days. The walking-on-eggshells days. The might-as-well-go-back-to-bed-now days. The days that, if they come back-to-back, make people forget you exist and even real friends ask where you’ve been because you haven’t left your house in you can’t remember how long and even picking up the phone is too much energy expended that could have been spent on something important, like finding food or crawling to the bathroom. You must not do anything, anything at all, that will knock the wall down and you spend every moment tense and in fear that it will fall down anyway. Cooking, working, cleaning, socializing…—the list of things that you can not worry about gets longer the longer you’re forced to maintain the wall. You are a slave to the wall. Keeping it standing is all you live for.

Sometimes, though, you can’t build the wall at all, or you do build it but a bad day knocks it down and you’re left trying to re-build in the middle of the day without the benefit of a full night’s sleep. You just can’t do it. It’s not for lack of effort. Your entire life is about that wall. But the wall can’t be built if there is nowhere TO build it. And the pain is in your whole head and your whole body too. There is no room for a wall, and no functioning to even be trying to save. Those are the worst days. Those are the might-as-well-cry-it-won’t-make-it-hurt-worse days. The disappear-into-your-hole-and-wish-someone-would-save-you days. The bang-your-head-against-the-wall days. The pity-party days. Those day are an eternity of unendurable, unending minutes that last an eternity that you somehow must get through, so you get through them the only way you can: second by second. You only allow yourself to focus on one second. Just make it through one second. That’s all you can ask of yourself. When you make it through, you allow yourself to bask in the victory before you focus on the next second. And once you get through that one, you focus on the next one. And the next, and the next. And eventually, after forever, you’ve gotten through a minute. And so you fight your way through your day, minute by minute, second by second.

Thankfully, most days are just mostly-bad days that make life hard, not worst days that make life impossible, so on the average day when you wake up you’re able to build your wall. First you evaluate your pain and if your hours of sleep helped you or hurt you. You ask yourself Where will the wall be today? Are there any remnants of yesterdays wall left over for you to build on or with? Did the defenseless hours of sleep leave you with higher pain and less ability to build, or refresh your energy and dampen your pain? Depending on the answers, you might roll over and go back to bed—building is going to require more energy than you have right now—or you might start your wake-up routine.

But every day, rain or shine, you are a builder or a wall inside your head. The wall is meant to keep the pain at bay, and it does a better job of it some days than others. There is no end in sight so you just keep building, every day building, quietly hoping that some day it might end, but never allowing that hope to overcome you. So you build, and build, and build.

Breaking Stigmas: Dependence vs Addiction

Breaking Stigmas: Dependence vs Addiction

“So what changed?” My friend asks, flabbergasted. “You’re up, wearing makeup, out of bed, walking around, acting like you’re feeling fine!”

“That’s because I am feeling mostly fine, or much better than I used to.” I say and I proceed to tell her my story.

It’s a story I’ve told, in some form, many times in the last three years, for two reasons. One, I’m alarmingly frank about my life, which is why you get this article, and two, the change my friends saw in me was so immediate, so cataclysmic, so life-altering that they couldn’t help but ask.

Three years ago I was in a mental hospital after suicidal tendencies, on 8-10 different medications, none of which were working, completely drained emotionally, mentally, and physically, and in mind-numbing, nerve-wracking, anxiety-inducing pain 24-hours a day. I spent my days clinging to my parents, scared to be left alone, unwilling to leave the house, and in bed 24 hours a day. My life was in absolute shambles, and it was because of pain. Pain, that monster that won’t even let you get peaceful sleep at night, had completely taken over my life.

I spent two different weeks at inpatient clinics for my mental health, over a month at specialist hospitals for my pain, and untold hours curled up in my bed, crying my eyes out, just begging for someone to please, PLEASE, take it away. I was in the ER at least twice a month for pain relief because I couldn’t manage it at home. During this time I was being taken care of by my parents, thankfully, or I truly think I would have ended my life.

I was in mandated therapy and during this time one of my psychiatrists asked me why I’d never stayed on narcotics when they helped me so much. Her question surprised me. I knew that narcotics helped me, but I was ashamed of that. I believed that narcotics were unequivocally bad, and I didn’t want my doctors to think I was any less of a person than they already did. I was already their hardest patient to deal with. To add a narcotic addiction to it was unthinkable. The few times I’d been temporarily on narcotics I’d gotten off of them as quickly as possible so that I wouldn’t get addicted. On top of that, my neurologist was absolutely against narcotics; her fists curled up into little balls and her shoulders tensed up when she talked about it she hated it so much, so I knew they were off-limits. Why had I never stayed on narcotics? Because I had been taught that narcotics were bad and there was no good way to take them.

Then she said something that blew my mind. She said “you know, in the pain psychology community, we look at it differently. We say that addiction is when someone uses or does something, like alcohol or porn or gaming, to the detriment of their health and functioning. Dependence is when someone requires something to function better. If you started narcotics and they helped you actually function and live a normal life, we wouldn’t consider you addicted. We’d consider you dependent.”

Mind. Blown.

I thought about almost nothing else for a few weeks and then I made the decision that changed my life.

I’d rather live a short life than endure a long one.

I’d rather put pills inside my body that messed with my organs than continue on as I was: visiting the ER twice a month, fighting against suicide, needing to be taken care of by my parents, never seeing friends or holding a job.

You see, my life as I was enduring it then was not worth living. I hated it. I was miserable. I had tried over 100 non-narcotic medications to manage the pain and the side-effects were horrifying, plus they hadn’t worked. My mental health was frayed to the point of disintegrating, and my poor family was completely occupied in taking care of me, unable to live their own lives. I was alive, but just barely.

And so, with the approval of my psychiatrist, I made an appointment with a pain management doctor. He took a long look at my file and then saw me twice before he offered me a contract. I read it carefully and promised to follow every rule. Then I signed and he handed me a piece of paper that was my ticket to freedom and functionality. And that’s what it was: the narcotics made me functional. 

I should also add that I’m not ONLY using narcotics to treat my issues. I have a well-rounded regimen of healthy diet, lifestyle, treatments from both Western and Eastern medicine, and essential oils that I use. All of them together make me a whole, functioning person. I’m not wholly reliant on the narcotics, even though I am physically dependent on them.

It’s extremely important to say that I am careful to take the meds exactly as prescribed, never a minute before I am allowed to take them or more than I am allowed to, and to keep careful track of my meds so I don’t lose any. I do not lie about how much I’ve taken or ask my doctor for more than I need. When I go to the ER, which is rare now, I bring my contract with me or tell them about it so they know. My doctor has commented multiple times that I am taking them exactly as I’m supposed to and he’s not worried at all about me becoming addicted. I don’t show any signs of addiction, but I am clearly physically dependent on the meds. When I go off of them my body goes into withdrawal.

The difference between dependence and addiction is important. According to The American Pain Society in their document “Definitions Related to the Use of Opioids for the Treatment of Pain” most pain patients treated with opioids, while likely to become physically dependent and tolerant of opioid medications, will not become addicted. Their definition of addiction is “a primary, chronic, neurobiologic disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.” and their definition of dependence is “a state of adaptation that is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.” 

It is a tough thing to talk about, narcotic dependence and addiction, and in the world of Spoonies many people have strong feelings about it one way or another. My experiences may not be the same as someone else’s, and while I don’t personally struggle with addiction, I would never want to advocate for someone to start narcotics and become addicted to them. This blog is only about my experiences with being freed from the stigma of narcotics, and thus freed from the pain that has plagued me for years. I wanted to share how I was freed of the fear that taking narcotics would be worse than suffering through what I was going through. I also want to break the stigma that narcotics can’t be taken responsibly. My doctors will testify that I am someone who has taken them responsibly for three years, and I know of a few others who are doing the same. I also know of at least one person who is taking them irresponsibly, so I am not blind to the problems of addiction. I’m just saying I’m a girl who was nearly dead with misery before I was taking them and they have given me my life back. They aren’t all bad for everyone, and I feel like I should testify to that.

I refuse to be ashamed of needing narcotics to function. Narcotics, along with the love of my family, saved my life. With their help I am living life rather than enduring it

Within six months of taking narcotics on a daily regimen I had a job, I was living in my own place, I had a social life, I was volunteering at church again, my depression was under control, and I was happy.

I. Was. Happy.

The pills do not make my life pain free. I still have bad days, but they are not every day like they were before. In the hours that I’m not on the meds, I’m just as bad as usual, so I just cram my day into the time that I’m on the pills (because I don’t get enough to get me through a whole day). But the important thing is that they mask the pain enough for me to function. They masked the pain that I’d been spending 13 years trying to conquer, and that is splendid. That is amazing. That is more than enough.

***If you or a loved one is struggling with addiction, as opposed to physical dependence, please get help today. One hotline number is 1-877-769-0445. It is toll free.***

Surviving Second by Second

Surviving Second by Second

It’s on nights like these that I reach deep inside for hope, trusting that there is some piece of surviving, some bit of energy that I’ve overlooked in my previous struggles, a stowed bit of vigor that I might call upon to get me through this night. A few extra spoons tucked away for a rainy day. But I find tonight, like most nights, nothing in my stores of strength; no extra spoons anywhere to be found. I have nothing left to draw on. So instead I must stretch out what little energy I have and make it last until I’m able to sleep.

Spoonies are familiar with this struggle, this unfortunately familiar twisting of insides and stretching of self. We fight this battle every day. We spend weeks rationing bare numbers of spoons where others have them to spare. For us, each day is a struggle, each hour is an agony, even a minute is an eternity. Sometimes getting from one second to the next is all we can do. But we do it, and if we are wise, we celebrate it. We celebrate each second we survive without giving up, because each second we survive is one second more than we thought we could.

So tonight I celebrate as I survive each second, because one second is all I can handle at a time.

Showering and Bathing as a Spoonie

Showering and Bathing as a Spoonie

Let’s talk about something personal, ok? Showers and baths. We all know how exhausting they are for a Spoonie, but how can we work them for our benefit?

When I shower, I do it as quickly as possible. I use 2-in-1 shampoo/conditioner because I don’t have the energy or time to sit in the shower waiting for conditioner to sit in my hair, and the arm motions of rubbing it in and washing it out are extremely tiring. Fortunately my hair is one of my better features and I don’t require expensive shampoo or conditioner to make it look good.

For my face and body I use a Norwex body cloth. It is this awesome microfiber cloth that has antibacterial properties in it. It helps me not get breakouts or get sick from a bacteria-infested washcloth or loofa in the shower. I used to have huge problems with breakouts before I started using it, but now my skin is clear! It’s nice to have one quick cloth to clean, and then I’m done. 

When I take baths, I do it because my body is so achy that I need heat all over my body. When I bathe I use epsom salts. I don’t just put a few sprinkles of them in, I use a full cup of them, and that makes a huge difference all by itself. I also add my essential oils. There is a huge list of oils that you can use for baths for different reasons (to calm anxiety, to relax, to ease pain). When I bathe I use 2 drops of Rosemary oil, 2 drops of Wintergreen oil, 1 drop of Peppermint oil, 1 drop of Panaway oil, and 1 drop of Copaiba oil. These five oils are my go-to pain relieving oils and they smell AMAZING together. I soak for at least 20 minutes. 

I’ve switched to microfiber towels that are antibacterial as well. Not only do my towels smell fresher, my body–where breakouts used to form–is clearing up. Those old dingy, bacteria infested towels are gone! It contributes to my overall health, which, as a Spoonie, is so important.

Do you have any tricks that you’ve come up with to get through showering and bathing more quickly or more painlessly? Comment and let me know!