sh*tty things that happen to me

Withdrawal is sneezing: What it’s like to taper off opioids

So as a result of feeling a bit better lately, I have been trying to go off all of my opioid pain medications, which at one point totaled as much as 60 mg. a day — three, eight-hour time release 15 mg. morphine pills and then as many as three, short-acting, 5 mg. hydrocodone as needed.

I worked my way down from 60 mg. a day to 15 mg. a day over the course of a month, and then tried to drop down to zero. It did not go well. You can read more about that here.

A little over a week after trying to go cold turkey, for various reasons involving a fresh pain flare and horrific withdrawal symptoms, I ended up back on the drugs. And I have spent the last few months working with a team of doctors trying to figure all this out and attempting to slowly taper off those last 15 mg.

This is what it’s been like:

Withdrawal is sneezing. Every three or four minutes. As soon as the opioids wear off at all — it’s sneezing.

And it’s anxiety. And waking up drenched in sweat. And it’s the kind of diarrhea that you have to learn to accept as a part of your life now. The kind that fills the toilet multiple times a day and leaves your legs weak.

It’s calling your high school boyfriend at 2 p.m. on a Friday because you’re in Target having an anxiety attack for no reason and you need to talk to someone, anyone, or you might actually die right there between the fitting room and the yoga pants display. It’s immediately regretting that phone call and then having anxiety about why you made it in the first place.

It’s not sleeping. God is withdrawal not sleeping. It’s, you’re lucky if you get four hours in one night. And waking up at 3 a.m. like normal people wake up at 7 a.m. or 8 a.m. or even 9 a.m.

It’s giving up, and then trying again tomorrow.

It’s realizing that cutting your pills in half and taking them in a different time configuration actually helps a lot. And it’s tracking every dose and every symptom in Google Keep.

It’s deciding that maybe dating isn’t the greatest idea when your fight or flight response is literally kicking in every time it takes a guy more than seven minutes to respond to a text message. It’s giving in and hooking up with a guy on a Tuesday night anyway because the escape is worth the mess you’ll have to deal with in the morning.

It’s doing a lot of things you aren’t proud of.

It’s your primary care doctor telling you that other people have no problems at all going off these drugs, then qualifying his statement with, “But, I mean, I believe you,” which somehow implies he doesn’t.

It’s reaching out to your old psychologist and pleading for help, and then getting referred to a psychiatrist who specializes in this sort of thing and finally finding one person on the whole entire Earth who actually has some idea of what you’re going through.

It’s a glass of wine, and a handful of Advil, and lots of sugar candy, as you try to find anything to help manage the symptoms.

It’s slow. Withdrawal is maddeningly slow. It’s going down 1.25 mg. in a day and feeling like the world is ending and waking up more anxious than you’ve ever been. And wondering if you can actually do this.

And then it’s a post anxiety-crash four hours later, and being so tired that you can’t even move your arm to check your phone.

Withdrawal is multiple people calling you a drug addict to your face because your body is physically dependent on a medication you were given by a doctor. It’s multiple people saying you just need more willpower and more prayer and more desire to get off the drugs.

It’s wondering if maybe you are a drug addict.

It’s trying to eat Taco Bell because Taco Bell usually solves everything and then realizing that you can’t even stomach a cheesy gordita crunch because the withdrawal has destroyed your appetite.

It’s working out to help the anxiety, and using the stupid Calm App for meditations that never work, and texting your best friend 72 times an hour so that you know you’re not alone. And then texting her again. And it’s breathing her oxygen for awhile because you don’t seem to have any of your own.

It’s intestinal cramping so severe that you’re literally doubled over in pain on the couch, crying out in pain, wondering if this is the end.

It’s deciding to go back to church because for some reason, for that hour each week, you feel maybe a little bit of peace.

Withdrawal is feeling weak.

It’s wondering if you’ll ever feel normal again. It’s wondering that over and over and over and trying to convince yourself that someday you will get a full night’s sleep and you won’t wake up covered in sweat and you won’t have diarrhea first thing in the morning and you won’t have the crushing feeling of anxiety as you greet the day.

Withdrawal is trying to live a normal life while your body goes through hell every day. It’s trying to work and be a good friend and a decent human being when all you want to do is die. It’s trying to figure out how much information, exactly, you should give your boss about your opioid dependence.

It’s having a pain flare and thinking that maybe the drugs were doing more than you thought, and wondering if you’re even doing the right thing.

It’s saying that John Green quote about survival to yourself 59 times a day. The one that goes, “I’m not saying that everything is survivable. Just that everything except the last thing is.” And then it’s reminding yourself that this is probably not the last thing.

And it’s reaching out to your Facebook friend who has the same chronic pain you have and him telling you that you have to do this — it’s important that you do this — because if you don’t the next best option is in-treatment and you don’t want that.

It’s trying to distract yourself with The Hobbit, and Spotlight and Downton Abbey, and Facebook.

Withdrawal is still happening. It’s ongoing. It’s a long-term goal. A hope that one day you’ll be clean — whatever that means.

It’s praying, and crying, and giving up, and trying again.

And it’s sneezing.

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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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Looking for God on the operating table

There I was, stomach down on the operating table, in only a hospital gown and my underwear, and I found myself doing the one thing I hadn’t sincerely done in months.

I was praying.

With my whole heart, my whole being, and my whole soul, I was saying the most earnest prayer I could remember saying in a long, long time.

“Dear God. Please, please, PLEASE be with me right now. Please, whatever happens, please do not let them hit a nerve. Please God. I could not handle it if that happened. Please God. You are the only one I can ask for help right now. I need you. I need this. Please help me.”

It was my second trip to the Mayo Clinic and I was in the midst of what was supposed to be a 10-minute epidural that had passed the hour mark. The original doctor had been unable to get the needle through my spine in my middle back, and another doctor had to be called in to consult.

Eventually, they decided to go through my lower back, but to get the medication in the right place, they had to thread a catheter tube up my spine — no easy task. They kept threading it to the left when it needed to go right, and so they had to keep pulling it back down my spine and out of my body and redoing it.

In case you’re wondering, it really hurts when they do that, and you can totally feel it.

Before the procedure, everyone I talked to, from the nurse who checked my blood pressure to the actual doctor slated to give me the epidural, had assured me seven ways from Sunday that this was going to be a quick and easy procedure.

They told me there was no reason to give me any of the sedative I had been given when I had undergone a similar procedure awhile back, because this one was just going to be so dog gone easy.

I should have known then that it wouldn’t be. But I nervously took them at their word.

Eventually though, as I heard the doctor tell his resident, “I’ve just never seen anything like this before,” I started to worry that this whole thing was going to be full of worst-case scenarios. One of which was that they could hit one of my nerves during the procedure, which could send a shooting pain down my leg, that, from what I could gather, would hurt like hell.

So, as more and more things went wrong, I lost more and more faith in the doctors poking me in the spine. And eventually, I turned to the only one you can turn to when there’s nobody else left to ask for help — God.

“I’m so sorry that we haven’t talked much in the last few months. I am so sorry that I haven’t been going to church. I swear, I am,” I prayed silently. “I just really need your help right now. Because I am going to freak the eff out if they hit my nerve. I’m telling you, I could not take that.”

Eventually, about 90 minutes after I first lay down on the table, they were done. The doctors had managed to get the medication into the right spot without hitting any of my nerves.

I could barely walk out of the room to where my clothes were, and it felt like someone had just stuck a bunch of needles into various parts of my back — mostly because they had.

All I could think about was that prayer though. I hadn’t prayed like that in such a long time.

So many people write how having a chronic illness strengthens their faith, how it brings them closer to God than they’ve ever been. But I have no idea how that happens. For me, it’s made me a little bit more of an atheist every day.

When I first got sick, before I was on any medications that helped at all, before I had any idea what might be happening to me, I would lay in bed at night, unable to fall asleep because of the pain, and I would literally cry out to God.

And in those moments, when the pain only got worse, He seemed so silent.

Then, when it became clear that I would have to resign my role as the youth leader at the church I was attending, I started to question whether this whole thing was somehow God’s way of telling me I wasn’t doing a good job leading the youth.

I know, I know, that’s probably not true. But when something like that happens to you, it’s impossible not to have those thoughts.

From there, I started to wonder how any God could ever let one of his children suffer the way I have.

And then, one night a few months ago, I was up all night in such severe pain that the next day the doctor gave me a shot of Dilaudid. Unfortunately, instead of relieving my pain, it promptly made me start vomiting uncontrollably. I literally threw up all night long, with barely enough time to catch my breath between each time.

It was the worst 48 hours of my entire life. And it was then that the questions of where God could possibly be during all of this really started to take root.

I really do believe that life with obscene chronic pain is the worst life imaginable, and I don’t understand how it could possibly lead anyone to have a closer relationship with God. For me, it has only made Him more and more distant.

Maybe I am angry or just confused. And maybe one day everything will become clear. But for now, I am in too much pain to make sense of the fact that a supposedly loving creator would let one of his creations endure such a thing.

And yet, there I was, on the operating table, praying with such a sincere heart that I barely recognized myself.

So I guess when it comes right down to it, I still want really want to believe. I need to.

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