Everyone is always asking me, “How are you?”
And not like in the, “How are you doing today on the glorious sunny Saturday afternoon” sort of way, but more of the, “How are you feeling because you’re always posting on Facebook that you’re in pain and stuff?” sort of way.
And if they ask me in person, they always have this weird look in their eye, like they’re confused by the fact that I don’t really look sick.
Well, I feel like I’m dying pretty much all the time, that’s how I’m doing.
I feel like hell.
I wake everyday feeling like a butcher knife is in my right ribs. And the pain is so horrible that it literally wakes me up in the middle of the night, like a demon that has entered my body.
I feel like sh*t.
And that’s usually what I tell people.
“I fell like hell.”
When the pain pills are working, my answer shifts to, “I’m doing alright, but it’s only because of the hydrocodone.”
I think that response kind of embaresses my boyfriend though. He’s always hushing me. Telling me to stop telling everyone I’m on drugs.
I feel like it’s important to note that though. I feel like people should understand that the only reason I’m currently able to stand upright and have a conversation with them is because I’m on a constant stream of opioids.
Lest they think I’m cured. Or they think I’m not that sick.
Or I don’t know.
I guess it doesn’t really matter what they think.
But I feel the need to tell people. To put it out there: I’m in pain. All the time. And if I’m not, it’s only because I’m on drugs.
I suppose maybe it makes people uncomfortable when I respond that way.
But maybe, one day, someone will say, “How are you?” and I will finally be able to smile and say, “Good.”
And when I say it, I will be able to mean it. And they will know I mean it.
Because I wouldn’t say “Good” if it wasn’t true.
My pain psychiatrist used to tell me that pain signals have to travel along your nervous system up to your brain, and that if you send other signals through your nervous system to your brain at the same time, sometimes they can sort of act blockade and by extension lessen your pain.
Like, for example, if your brain is focusing on a really intense episode of Burn Notice, where Michael has to blow up a building and all he has at his disposal is a paper clip and an electric toothbrush, then your brain is probably not nearly as focused on the excruciating stab wound feeling in your right ribs.
It’s not a 100 percent cure or anything like. Even Dr. Samsi admitted that at best the refocused brain could probably only take a level 9 pain down to a level 6.
It’s three little notches, but it’s three notches I’ll take.
And it’s why I spend hours and hours and hours watching old episodes of Burn Notice, tuning into HGTV even though I don’t own a home, and why I love makeup tutorial videos on YouTube.
It’s also one of the best things about living with my family.
Yes, I did technically live with one family member before I moved in with my mom. But, my brother Steve and I would often go days without seeing each other because of opposite work schedules and because we shared a rather large two-bedroom for just two people. I mean, it wasn’t a mansion or anything, but we each had our own full-size bathroom, and we would often joke about having our own “wings” in the apartment.
Now though. Well, now I share a bed with my 14-year-old sister.
Yes, a bed. Not a bedroom. A bed.
Five of us are currently sharing a two-bedroom apartment with one bathroom.
My clothes, which used to breathe in a gigantic walk-in closet, are now hanging precariously on a rack in the laundry room. My poor brother’s bedroom is actually just one of the couches in the living room. And everything I’ve collected over the last 11 years of living on my own is now in boxes in my mom’s one-car garage.
But I love it.
I love that when I’m in pain there is always someone around to talk to me. I love that I when I’m feeling hopeless or sad or in despair, there is literally nowhere I can go to be alone. I love that I am always with people I love.
I love it when my mom comes in the and wakes me up in the morning because she knows that the combination of the sleeping pill I’m on the fact that my pain pills have usually worn off by 8 a.m. make it incredibly difficult to get out of bed.
I love it when we have lunch together and eat dinner as a a family and have ice cream nights.
I love it when my brother and my mom and I go for a three-mile walk and pretty much do a full-circle around the entire town of Byron, because it’s actually that small. And I love that they never complain about going super slow so they can keep pace with me.
And I really, really love it at night, when my little sister lays in bed with me and we turn on some horrible junk TV, like Obsessed with the Dress reruns on the Style Network, and then we talk about how crazy Beau is to the staff, and for a few minutes my pain signals are blocked off by sisterly love.
There is big difference between laying in bed alone, in the dark, in pain, wanting to die; and laying in bed in the dark, next to your sister, in pain and not wanting to die.
It’s three little letters. But it’s three letters I’ll take.
I’m having a pretty good day.
And by that, I mean, a pretty good “pain” day. That’s how my whole life is defined now.
Yesterday sucked though.
Yesterday I was in agony.
I think maybe it was because my birthday on Friday and my boyfriend came out to visit, and my whole family took me to Olive Garden for dinner, and maybe it was all too much for me and I was paying for it on Saturday. Or, maybe it was the weather. Or maybe it was because the fan in the living room was blowing at some crazy angle.
Or maybe God was just p*ssed off at me.
Whatever the reason, the pain was awful, and so, I ended up taking extra hydrocodone.
I’m supposed to take “one every six hours,” but I’ve been taking the stuff for months now, and many, many times “one every six hours” has the same effect as an M&M would.
Sometimes that means I end up taking “one every four hours.” Other times that means I end up taking “two every six hours.”
But then, every couple of days, I have to sit down and count out how many days I have left until I can get a refill, and then count out how many pills I have left and divide the two and start rationing it out.
As of right now, I have about three pills a day to get me to my next refill.
I already know that’s not going to be enough.
Here’s the thing, it’s not that I used to judge people who used excessive amounts of painkillers in the past. It’s more that, before I got sick, I just never even thought about them.
But now. Now, I sit down on Sunday mornings, open the orange prescription bottle, dump out the pile of powdery white pills, and count out each individual one, and by extension calculate how much pain I will have to endure over the next three weeks.
I already know that there is no way I can get through the next three weeks with three pills a day.
My plan right now involves one part prayer, and two parts new doctor, who I see Sept. 10.
But, my experience with medical professionals thus far though has been, “Oh well.” As in, “You better find a way, because as long as you’re not bleeding out, it’s not our problem.”
But that’s the thing, it really, really does feel like someone is stabbing me with a butcher knife.
I have endured the worst pain in my entire life over the last six months.
Pain that makes me consider suicide on a daily basis. As in, I seriously plan out how I can kill myself. As in, I was seeing a psychiatrist who specializes in helping people who deal with chronic pain because I was fantasizing about driving my car off the road or swallowing all my pills before I went to bed at night.
I am in that much pain on a regular basis. And I am not exaggerating when I tell that you that there are things in this world worse than death.
But because I am not visually bleeding out, because my blood work comes back normal, because nothing ever shows up on any MRIs, I get 120 hydrocodone a month, and no more.
If someone rushed into the ER with a gushing stab wound, they would never be denied the pain relief they need.
Or maybe they would. But that would be tragic.
Because pain eats at you. It messes with your head. And it changes you so much faster than you think it will.
And there is a pill out there that can take my pain away. And I don’t want to take it so I can get high. I don’t want to take it so I can feel like I don’t have any troubles, or like I’m floating or whatever.
I want to take it so that I can get some relief from the metal claw digging into my ribs and maybe think clearly enough to see into tomorrow and remember that I do want to keep on living.
It’s so, so easy to sit on the outside of pain and judge people though.
It’s easy to say things like,
“Well, you can’t just depend on the pain pills, because you’ll end up building a up a tolerance to them, and then where will you be?”
“You need to take the number of pills the doctor tells you to take because that’s what the doctor says and that must be right and he must know exactly how many pills it will take to take your pain away without giving you a drug addiction.”
But that’s all bullsh*t when you’re in so much pain you want to kill yourself.
When you seriously want to end your life because you cannot handle the amount of agony that has engulfed your right ribs, the very last thing you give a crap about is the possibility that “two hydrocodone every six hours” instead of “one hydrocodone every six hours” might lead you to a life of pain pill addiction.
Or maybe you are different.
Maybe you would have a clear head and think differently in that situation, and maybe you would be able to endure hours and hours of the worst pain you’ve ever experienced, while a bottle of hydrocodone pills that could give you the relief you need were sitting right there on your dresser, and maybe you wouldn’t reach for them.
But I doubt it.