True thoughts on pain

Does Chronic Pain Define Us?

The strangest part about having mental health issues is that it makes you wonder who you really are as a person — in your core.

Like if you’re feeling insanely anxious because of morphine withdrawal, does that make you an anxious person? Does that become part of who you are? Is that suddenly one of the many personality traits people will associate with your character?

Or, when you’re on morphine, and it changes you from a Type A person into a Type B person, is that who you are now?  Is that your personality?

Or what about when you’re in so much pain that your patience is gone, and you realize that you are being a total bitch to everyone within striking distance. Does that make you a bitch? Is that who I am now?

I honestly don’t know who I am now.

I’ve been feeling especially unsteady lately as I try to navigate a new-found glimpse of health where I have actual pain-free days, and as I also simultaneously try to go off morphine completely. It turns out long-term morphine withdrawal is so much more emotional than anyone ever tells you.

And it turns out that I actually have no idea who I am as a person anymore.

I’m working with a psychologist and a psychiatrist, and I’m trying to figure everything out. But it’s almost like I spent the last three years of my life so completely consumed with my health issues, that I lost my identity. 

Back when my parents got divorced, I remember being in a “kids from divorced families” support group about two years after everything first went down, and the woman leading the group asked me to tell everyone a little bit about myself. And I suddenly realized I didn’t know myself well enough to answer that question.

I remember lying and saying I was involved in things I used to be involved in, like theater. I realized in that moment that I had been walking through life with my head down, with my eyes on the ground for years, and I was trying to look up and see the world around me again. I’d been so consumed by my family’s issues that it literally hurt my eyes to look up. 

These days, the setting is different but the realization has been the same. I’m on a date, or writing a Twitter bio, or talking to my therapist, and I suddenly find myself unable to answer basic questions, like “What are you interested in?” “What do you like to do for fun?” or “How would you describe yourself?”

And it hits me, that for the second time in my life, I have no idea who I am.

I know what I’m not. I’m not a youth leader anymore. I’m not Type A anymore. I’m not independent anymore. I’m not even drug free, or a practicing Christian, or living in my own place.

But if I’m not any of those things, who am I?

They say that going through hard times makes you realize who you really are as a person. If that’s true, it turns out that this whole time I was an atheist, Type B, bitch.

But I’d like to believe something else. I’d like to think that hard times are like a fire, a hurricane and maybe a bomb — all at once — and they just destroy everything in their path. Picking up the pieces means finding lots of damaged things. It means that for a while, everything is burned, and blown up and underwater. And that’s okay. It’s okay to be damaged.

The important thing is figuring out how rebuild, and creating something new from the wreckage. It’s about figuring out what I want my soul to look like now that it’s endured an explosion. I’m not sure yet who I will be when everything gets redone — I’m not sure who I want to be.

When 2016 started, I posted a quote on my Instagram, “What is coming is better than what has gone.” 

And I have to believe that whatever I choose to rebuild, it will be better than what the pain destroyed.

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Going off morphine is hell

Editor’s note: Like most of my posts, a version of this story originally ran in Pain News Network. This version contains profanity because going through opioid withdrawal is seriously fucking hell.

This weekend, as I tried to get off morphine once and for all, one thought kept going through my mind — if the devil is any good at his job, hell will just be eternal opioid withdrawal.

It’s like, have you ever had the flu, and also food poisoning, and also been hit by a train, and also had the fight or flight anxiety that comes from being chased by a bear for a week straight — all at the same time? Well it’s worse than that.

It’s fucking hell.

And it’s all made even worse by the fact that I had the cure the whole time. Every single minute that went by, I knew that I all had to do to make it all go away was pop one of those little blue pills in my purse.

I made it to the 72 hour mark last night at midnight. That’s 72 hours without a morphine or a hydrocodone. I haven’t gone a full 72 hours without an opioid in almost two and a half years.

I swear to God I was tapering. I spent all of November tapering down my dose. Going so effing slow. Like three pills, then two pills, then three pills, then two pills, then after a week, I’d do one pill then two pills, then one pill.

But I was down to one pill every other day, of the lowest dose, and I knew the next step was going through withdrawal. I thought maybe it wouldn’t be that bad since I had been going so slow with the tapering. I was wrong.

Honestly, the first 24 hours weren’t so bad. My body was just chilling, all expecting another dose in a day or so. But then, at midnight, exactly 24 hours in, the involuntary leg movements started. Yes. This is a thing. I was lying in bed, in the middle of the night, and my right leg would just move. Also, my anxiety started skyrocketing so high you’d have thought I was in a war zone.

By the morning, about 31 hours in, the muscle aches had set in, and everything I had ever eaten over the last two years had started to come out. Diarrhea doesn’t sound like the worst thing in the world, until you literally spend so much time on the toilet that your legs go numb. And then when you do get up, you are so dehydrated that you can’t even walk without holding on to the wall.

There’s other stuff too, the kind of stuff that maybe sounds minor until it happens to you. Like, my nose was randomly running, and I was sneezing like there was a secret cat hidden in the bathtub. And I could not sleep. At all. And if somehow I did get a couple minutes of shut eye, I would wake up drenched in sweat. Also everything made me cry. Seeing the sun? Tears. Facebook posts about makeup? I’d start weeping. Basically the fact that I was alive was enough of a reason.

Again, all these things don’t sound so horrible, but when they are all happening at once, it is literally hell on earth.

I spent most of the 72 hours watching Breaking Bad — which is either the worst show to watch during withdrawal because it’s all about drugs, or the best because it’s all about the horrible things drugs lead to.

I also spent most of the 72 hours trying to process how I got to this point. Morphine has been so good to me over the last two years. And I stand by the fact that it literally saved my life. If it wasn’t for the pain relief I got from the drug, I don’t know if I would have been able to endure. And I am thankful to morphine for that.

But I wouldn’t wish the morphine withdrawal on Hitler.

And I thought about everyone who has ever had to endure this for whatever reason. And my heart filled with compassion and love for them. Some people like to say that drug addicts are just weak, or lack self control. Those people are assholes.

I also thought a lot about how much I wanted to just pop a morphine and make everything better. I thought about it so hard. Vividly picturing the little blue pill in my head and fantasizing about how good it would feel to take just one.

And I thought about how going through this withdrawal was a good thing because I wouldn’t even be going off morphine if I wasn’t feeling better.

I felt like this was a final step. A last stand by my pain to suck me in. I had to get off this drug to move on with my life. But it was so incredibly hard.

And I kept thinking about how, I am a good person. I am a strong person. I should be able to get through this. Why am I struggling so much?

My best friend was extremely supportive during the whole thing, constantly checking on me, praying for me, and sending me encouragement. And at one point she sent me a text that said, “I think the last two years were the toughest times of each of our lives (in different ways). Glad I get to see you on the other end.”

The other end. Wow. I honestly never thought I would ever get to see the other end. For a long time, I didn’t even think there was an other end to get to.

The idea that I could get to this proverbial other end though, it was enough to keep me going.

Honestly, I still feel like I was jumped, and then tossed in front of a train. But I’m doing a lot better than I was doing on day two. From what I can tell the withdrawal symptoms can last anywhere from a week to months, but it’s those first 72 hours that are the most horrible. And I have made it through those.

I also discovered that there’s a cocktail of over-the-counter drugs that help. Specifically, I have been popping handfuls of Advil, Imodium and Benadryl.

I saw my brother this morning. And as I walked toward him, I felt like I was just regaining my footing after being in a plane crash. Still shaken up, disoriented and feeling like hell, I said, “Well, I’m finally feeling a little better. I made it to 72 hours.”

“Great. Now you have to make it a week,” he said.

Fuck, I thought. He’s right.

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A year of living in pain

The thing about being in pain every day is that people expect you to get used to it.

You never get used to it.

It’s been exactly one year since I woke up with a pain on my right side. It was Super Bowl Sunday, and I thought it was strange, but I went about my day. The following morning, instead of going to work, I made a u-turn and headed to the closest ER.

As a card-carrying member of Blue Cross, Blue Shield, I was given the $20,000-overnight stay, complete with a quick camera down my throat procedure, and a CT scan with IV dye that made me vomit right there on the CT bed. Is that even what it’s called? A CT bed? Whatever it was, I threw up right there on it, and then slid right back under the CT camera so that they could take some pictures, charge me and Blue Cross thousands of dollars and then tell me nothing was wrong.

Nothing at all.

Well, the camera in my throat did show a small ulcer in my intestines. That was probably it. That was probably what was causing the horrific pain. I was sent on my way with prescription strength antacid, and strict instructions not to eat tomatoes for three months.

A few weeks went by and I still felt like I was dying every day, so I went back to see the doctor. She told me to just “calm down.” Suggested I was just “stressing myself out.”

Two days later, I was right there, about to fall off the cliff into the valley of suicidal thoughts, where I would eventually swim around like it was a hot tub for about eight months. But, I hadn’t fallen in yet, and I was hoping that maybe I could still get back on solid ground, so I went to see another doctor.

He was too scared to give me anything to actually help the situation because: druggies.

So he sent me to a pain specialist, who I couldn’t see for three days. By the time I met the guy I was already thinking about slitting my wrists to escape the pain that had started to consume my life.

He told me I probably had a magical form of shingles — the kind of shingles without any other signs or any sort of rash. He gave me drugs that didn’t help, and sent me on my way.

I cried myself to sleep. Every day. I started missing one day of work a week. Then two. Then two and a half. Then three. Then suddenly I was trying to get only the very bare minimum done every day.

Then, I went to immediate care.

The doctor handed me a steroid pack without even telling me it was a steroid pack. She also gave me some hydrocodone. Weak hydrocodone. Weak enough that it would take me another two months to figure out that I needed about four of those pills to get any sort of relief for four hours. But at least she was trying.

I cut out everything in my life that wasn’t absolutely necessary.

Showers became an every other day, or every third day thing. If my boyfriend wanted to see me, he had to hang out in my living room. My part-time job as a youth leader went from a 40-hour-a-week, love affair with my passion to four hours a week and playing games during every youth group meeting.

When I had to do things, I took all the hydrocodone I could get my hands on to get through it. Sometimes that meant driving when I shouldn’t have been driving. Many times that meant working when I shouldn’t have been working.

When I did get myself to the office, I would spend half the time laying on the floor in sheer agony. I would cry. I would wonder how I was going to get through the next five minutes, much less the next five hours.

Then, on the way home, I would fantasize about driving my car into a semi-truck the way most people fantasize about going to Hawaii.

I begged my mom to come visit every single weekend. I couldn’t do my laundry, I couldn’t do my dishes. I thought about killing myself every night. I laid on the floor in my dining room, stared at a bottle of Drano in the bathroom and thought about drinking it.

I lost hope. A little more, each day, gone. I started seeing a psychiatrist.

I told the church I’d take the youth group on a mission trip to Alabama, but after that I had to step down. I had to move in with my mom. I joked about how much hydrocodone I needed to get through the mission trip, hoping that maybe someone would understand how difficult being alive was for me right then. Some people laughed, most looked at me in horror and then went about their day.

I made a work-from-home agreement with my boss at my full-time job so that I could go live with my mom — two hours away in a town that only recently got a McDonald’s.

The night before the move, I went to the ER. The pain was horrible. They gave me a really great drug, which was super, until it wore off. Then, somehow, the pain came back even worse. A few months later, the pain was just as bad, just as gut wrenching, so I requested the same drug. The second time though, I had some crazy reaction, and instead of a few hours of peace I threw up. All night. Over, and over and over again. Until I was throwing up air.

I finally, officially, wondered how the hell God could do this to me. To anyone.

I joined pain groups online. People would write things like, “Well, I’m just happy to be alive.”  Really? Why?

They would say, “Well I’m I’ve been dealing with horrific pain everyday all day for years, but on the bright side it could always be worse!” Umm, how exactly could it be worse? Your whole family could be dead? Well, yes, that would be worse. But other than that, there’s not much worse than a life spent dealing with chronic pain.

I would think of Jesus, enduring His trip to the cross. Enduring all that pain. And I’m only a little ashamed to admit that I was jealous that his pain ended after just a few hours.

Oh, to have an ending.

But I don’t have one yet. I’m still stuck. In this horrible pain.

I take pill, after pill after pill. The narcotics make it hard for me to remember pronouns. The nerve pain medications make it hard for me to stay awake.

None of them give me my life back.

I shower once a week.

It’s been a year and the pain is just as bad as it was on the first day. Sometimes it’s worse, but it’s always bad.

Have I learned to be more compassionate? Of course. But when I’m in pain, I’m also meaner than I’ve ever been in my life. I yell at my mom, I scream at my sister and my brother. I get angry at God.

Have I learned to be more present in the moment? Yes. But only in the same way that someone who’s drowning and gasping for air has to think about their current state of affairs.

Some of the doctors have given up hope. Some say they haven’t, but I can’t really tell if they’re lying or not.

As for me, I’m still undecided.

In the pain groups, people say there’s a certain amount of peace that comes from accepting it. But I want to keep fighting. I want my life back. I want to be who I was a year ago at this time.

Well, a year and one day ago.

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