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.
The thing that nobody tells you about Cymbalta is that it takes a machine gun to your sex drive. Seriously. When I was on it, I was so repulsed by sex that I started to think maybe I was legitimately asexual.
I mean, when the doctor hands you the prescription, it would be nice if they threw in something like, “BTW, you’re never going to want to make passionate love while you’re on this medicine.”
But of course, doctors never tell you stuff like that. And God forbid they give you a handout of some sort that maybe mentions it. No, they just leave you to Google “asexual” at 1 a.m. on a Tuesday night when you realize you’re identifying a little too much with Sheldon on the Big Bang Theory.
Don’t get me wrong, I have definitely been in such tragic levels of pain, that if someone had asked me if I wanted to give up sex so I could feel better, I wouldn’t have even thought twice about cutting off my own vagina and handing it over.
But the thing is nobody asked me. They didn’t tell me I might have to make that sacrifice when they put me on Cymbalta. So I didn’t even know it was happening. And that’s when you get to some pretty dark places.
Thankfully, I’ve since gone off Cymbalta, and my sex drive came back like a freight train.
But that doesn’t mean there aren’t other issues related to sex and chronic pain.
Like when you have stabbing rib pain on your right side, so you can only tolerate sports bras, and then he goes to unhook the back, and it kills the mood because there is no hook in the back of a sports bra. And he’s mad that you’re dressed like someone planning to run a 5K, and then you’re mad that he’s mad that you’re dressed like someone planning to run a 5K, and so you just leave.
Or when he wants to cuddle, and you have to explain that, “Sorry, I can’t lay on my right side because when I do it feels like someone is jack hammering into my bones through the mattress. Hope that’s not a deal breaker!”
Not to mention the fact that when you’re in physical pain, the last thing you feel is sexy. And you most certainly don’t feel like having anyone touch you ever.
First, there’s just the literal pain that can come from someone passionately throwing you against the wall, or even a pillow top mattress for that matter. When you feel like you always have a broken rib, even passionate love making can make you wince.
Then, there’s the fact that the pain probably keeps you from showering as often as most Americans believe is normal, which means you probably smell, which means you’re probably not feeling very romantic.
And of course, there’s the side effects from the medications, which make you gain weight, sleep all day, and zone out in front of YouTube videos about makeup while you simultaneously lose the ability to actually wear makeup.
Not to mention the fact that it’s just really hard to make love to someone, while you yell things like, “OH GOD! OH GOD! OH GOD! IF YOU TOUCH MY RIGHT SIDE AGAIN I’M GOING TO STAB YOU TO DEATH!’ or “YES! YES! YES! I NEED YOU TO AVOID MY CHEST AREA AT ALL COSTS!”
That’s the kind of stuff that can turn an evening of “Netflix and Chill” into an evening where you actually watch Netflix and chill.
But even with so many things working against the sex lives of those with chronic pain, that doesn’t mean people should give up.
For one, that old saying about how, “You can have great sex without having a great relationship, but you can’t have a great relationship without great sex,” is actually pretty true in my experience. Having sex is an important part of being a healthy couple. Of course, that doesn’t mean partners shouldn’t be understanding of the situation, and our pain levels. What it does mean is that avoiding sex, regardless of how legitimate the reasons for doing so are, will likely put a strain on your love life.
Also, sex is just a good thing to have in general. It helps your mood, it can be a great pain reliever and stress reducer. And, you know, it’s fun.
So I don’t think patients should just resign themselves to the idea that having chronic pain means giving up good sex for the rest of their lives.
Unfortunately, I don’t have magical solutions to offer people with chronic pain struggling to work sex back into their daily life. But there are a couple things you can at least try.
First, there’s always the obvious “talk to your doctor” advice. Yes, I know that conversation can be awkward — both for the patient and the physician. If you’re up for the conversation though, I definitely recommend it. Your doctor might be able to recommend other medications that don’t kill your sex drive, some less painful positions or other techniques to help you out.
In the end though, I honestly think the best thing you can do is be open about the issues without whomever you’re making love to. Just like with anything, talking about what’s going on usually does the most good.
And if you both decide that maybe you can try to get a wire-free bra with a hook in that back because that’s what he’s into, as long as he promises to never touch your right boob, then great! Or, if you decide that having sex just isn’t worth the pain, then that’s great too.
After all, there’s always Better-than-Sex cake in a pinch.
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.