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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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Surviving the Hurricane of Chronic Pain

I have recently started feeling better these last few months — a string of good days, I like to say — and it’s given me a chance to catch my breath and reflect on some of the crap I’ve endured over the last couple years.

For me, waking up one day with stabbing rib pain was like swimming along the river of life, only to be picked up by a hurricane, hurled back about 100 miles, and left to fight the raging current in water that was barely above freezing.

And yeah, it made about as much as sense as a hurricane in a river.

It was like everything I had accomplished had been taken from me, and instead of swimming forward, or swimming at all, I was literally gasping for air, about to drown every single day.

And people would come along and say, “Oh, I’ll pray for you!” And I’d be like, “Umm, I’m literally drowning! And there’s a hurricane! In a river! HELP ME!”

And they would say, “Well, if you really want to survive, you’ll give up gluten.” And I’d be like, “Umm, I just need a life raft! Giving up gluten isn’t going to help me!”

And they would say, “Well, if you were a horse, we would have let you drown by now.” And then they would laugh. And I’d be in the river, trying to survive the winds and waves and the rain.

And then someone with the best of intentions would come up to me and say, “Well, everything happens for a reason. I’m sure there’s some larger reason why you’re drowning.” And then they would walk away. On the land.

I spent almost six months on the verge of drowning. And eventually I just got so tired that I wanted nothing more than to close my eyes, fall back into the water, and let it all go. Let the pain go. Let the depression go. Let the daily battle to stay above water, go.

I spent every day wanting to let go. Planning ways to let go. Convincing myself that if my family really loved me, they would just let me go.

I also started stripping away everything I could so that I could stay above water. I got rid of my part-time job as a church youth leader. I threw my independence over board and moved in with my mom. And eventually, heartbreakingly, I even let go of my boyfriend’s hand. I let it all slip away so I could focus all of my energy, every day, on breathing in air instead of filling my lungs with water.

And I tried to see every doctor I could find, looking for a lifeguard. But they would say things like, “Well, you don’t look like you’re drowning.” Or, “Well, I mean, you’re drowning. But we can’t see the hurricane, so there’s not really anything we can do about it.” Or, “I mean, it’s not like you’ve been hit with a nuclear bomb. People who get hit with nuclear bombs are the ones who are really suffering.”

And then, finally, a rescuer came along. We will call him, Dr. M, for Miracle. I literally tear up when I think about meeting Dr. M.

He couldn’t see the hurricane either, but he believed me when I said there was one. And he understood the one thing I needed more than anything was a life raft. So he threw me one. Dr. M put me on a large dose of opioids, and it was the best thing that could have ever happened to me. It was like someone calmed the winds and the storm started dying down. The water finally got still for the first time in a long time.

He was the first doctor to actually take my pain seriously. I imagine that he’s either had chronic pain himself, or loves someone who had it because that’s the only way I can explain how compassionate he was — how amazing he was about believing that I was truly drowning.

It’s true that the best thing you can say to someone who is sick is, “I believe you.”

It was because of Dr. M that I finally got on a drug regimen that allowed me to float in the water every once in a while and rest my arms. To let the life raft do some of the work. And when I told him that the medication wasn’t lasting me all month — that, near the end of the 30 days, I was starting to drown again — he believed me, and gave me enough to get through all four weeks.

But even with the drugs, the only thing I could really do was float. I couldn’t swim forward or even get to shore. I just stayed still, trying to survive all the times the winds picked up, or the water got below freezing, or the waves got too big. I did my best to endure the side effects from the medication, the pain flares, and the ER visits.

There’s a saying, “You’ve got what it takes, but it will take everything you’ve got.” And surviving this has taken everything I ever had in my soul.

For the last two years though, I’ve just been happy to still be alive. Happy that I had a life raft and some calmer waters. I started planning how to live my life where I was. It was 100 miles behind where I’d been, but I started to realize that the trees in that area were actually kind of pretty. And that there were some other people floating around that I would have never met if there had never been a hurricane. I started to think that perhaps I could set up a life there.

But then, something happened. Something I never thought would ever happen, actually happened. I started swimming forward again.

I had tried every day that I could to swim forward, only to be pushed back. I would wake up and try to shower, go for a walk, drive, or do anything that would help me go forward again. But every time, I ended being tossed right back to where I was — sometimes even further back.

One day though, I swam forward and I stayed there. And then the next day, I swam forward a little more, and I stayed there too. And then again, again and again.

I had started taking vitamin D, after realizing that I was tragically deficient in what should more accurately be referred to as hormone D. When I started getting my levels back up it was like I suddenly had the strength to move forward again. My whole body could swim again.

And for the first time in a long time, I experienced things I had almost forgotten existed. The perfect pleasure of going for a long walk on a crisp fall day. The heart-stopping independence of being able to get in car, drive myself to the mall, and do the one thing I used to love most of all — shop. The joy of being able to take a shower and immediately blow dry my hair without needing an hour-long break in between the two.

There were so many things that I couldn’t do because I couldn’t swim forward for so long. So many things I had to give up. Like folding my own towels in my own special way. And waking up to the sunrise and being happy to see the morning light without having to worry about the pull of fatigue from my medications.

And even, especially, turning over and laying on my right side. I had not laid on my right side in over two years.

So now, here I am, finally swimming forward again for the first time in a long time. For now, it feels like maybe the hurricane has finally passed. But I still wake up every day worried that there will be another storm. I worry that the winds will pick up and I’ll be hurled backward, and I won’t have a life raft and I’ll start to drown again.

But now, at least, I know that if that does happen, I have it in me to survive.

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