Man, my medications make me so freaking tired. Like seriously, I’ve been off work for nearly two weeks because of the holidays, and I basically spent the whole time on the couch watching makeup tutorials on YouTube and flipping through Netflix (if you haven’t watched “The Honourable Woman” you haven’t truly experienced television).
I mean, in my head, I had all these plans and ideas of things I wanted to do. I really wanted to dye my hair, and go through all the clothes in my closet, and organize the mountains of candy that have piled up in my house as a result of my full-time job as the managing editor of a confectionery magazine.
And I wanted to write like 50 columns for the National Pain Report. Do you know how many I actually wrote? I wrote one. This one. That’s how many.
Because every time I start to think about doing any of those things I just end up grabbing a blanket and turning on another episode of Ally McBeal. It’s all those opioids and sleeping pills and nerve pain medications in my system. They just drain the life out of me.
All of this is to say that what I really want to do feels so completely impossible.
What I really want to do is raise awareness of chronic pain.
But the great irony is, of course, that having chronic pain makes raising awareness about chronic pain feel like an insurmountable task. I know first-hand that most of us are either in too much agony, or too drugged up to get the word out about what we’re all dealing with.
Yes, I know there are Facebook groups, and pain associations, and even websites like this for patients to rally around. But I think we can all agree that there’s still so much work to be done.
We need chronic pain awareness that’s even more in your face than all the pink breast cancer ribbons during October. People already know that cancer is bad, but try explaining to someone what it’s like to wake up every single day feeling like you’ve been hit by a truck even though you have an illness they’ve never heard of.
We need a world where I could tell someone, “I have chronic pain” and they would immediately know that I’m going through hell. A world where people hear me say that and automatically ask if they can bring me dinner, donate to my medical bills, or drive me to doctor’s appointments.
We need a world where people learn about my illness and are inspired to walk for chronic pain, and make T-shirts for chronic pain, and buy a can opener in a specific color that donates part of the proceeds to finding a cure for chronic pain.
Beyond that, we need to get our message to the politicians. They need to understand that all of us aren’t actually faking it in an attempt to get good drugs. We literally need opioids just to survive each day.
Politicians should say things like, “We couldn’t possible restrict medical care for those with chronic pain, even if the DEA is asking us to. We all know their struggle is hard enough. We don’t need to add to it.”
And we need pharmacists who look us in the eye when they hand us our drugs. Pharmacists who see the medications we take as just as important as the medications those with diabetes or asthma take, and who prove it by going above and beyond to get us the medications we need when we need them.
More than anything though, we all need to know we’re not alone.
We need to know that others are battling exactly the same demons we are late at night, when we feel like giving up, and giving in. And we need to know that it has nothing to do with us personally when we’re being treated like a drug addict at a doctor’s office. And that none of us really are lazy or faking it or exaggerating our symptoms, no matter what our friends and family say.
So, like I said, there’s still so much work to be done.
The only problem is, who the heck is going to do it? Because personally, I’m in way too much pain and on way too many drugs to do any of it.
It took me two years to figure out that I could paint the top of my prescription bottles with nail polish so that in the middle of the night, when all I have is the light of my phone, I could find my morphine faster.
Two freaking years.
That’s how long I’ve been sick now. That’s how long it’s been since I woke up with crazy, horrible, random rib pain on my right side that never went away.
It’s the worst kind of anniversary. There’s nothing to celebrate. It’s just a chance to look up at the sky, shake your fist, and say, “I’m still here. I haven’t given up yet. This thing has not beaten me. I will never surrender! Or, at least I won’t yet!”
I feel war-torn. I am tired, I am broken and I am clinging on to only a shred of hope.
I have so many medical bills that I pretty sure I’m going to die before I’m able to pay them all off. All the pills I take for breakfast (and lunch, and dinner) have made me gain about 50 pounds and, perhaps worse than that, they give me hemorrhoids. I barely drive anywhere beyond a four-block radius because it hurts too much. And, showering is so painful I can only manage it twice a week, max.
That’s not to say I haven’t had some victories along the way though.
So many times I have wanted to give up and just be dead already, but I’m still here. So many times I wanted to just down handfuls of pills to make the pain stop, but I didn’t. So many times I wanted to just stay down, but I got back up again.
Then there were the smaller things. Like surviving a week-long trip to Brazil, bonding with my family in a way that wasn’t possible before I moved in with them so they could help me cope with my pain, and discovering the Genie Bra, which doesn’t try to kill me like underwire bras do.
I’ve also found a new tea that gives me enough energy to counteract the overwhelming feeling of “wanting to do nothing” that comes with my medications. And, I’ve discovered the perfect dry shampoo for all those days I go without showering. Batiste is cheap, it really does get all the oil out of your roots, and it smells like a fresh shower mixed with body spray.
Don’t get me wrong though, the pain still sucks. Even when I do smell like a fresh shower mixed with body spray. It sucks so, so much. And I still want to get better — so, so much.
I’ve tried all the things people with rare illness are supposed to try when they get sick in America though, and nothing seems to work. I’ve been to a chiropractor, an acupuncturist, and even the Mayo Clinic. But the chiropractor was a quack, the acupuncturist was a swindler, and the Mayo Clinic just wanted me to pay $35,000 for a pay clinic that my insurance refused to cover.
I’m not exactly sure where that leaves me.
I Google things about rib pain like most people Google sports scores and the weather.
Sometimes I find things that sound legitimate, like a neurectomy, and sometimes I find stories about crazy people giving themselves coffee enemas and going off all their meds while they spiral further and further into horrific pain hoping it will be the magic formula they’ve been searching for.
But, in all those hours of Googling, I have yet to find a single person who has had intercostal neuralgia (what many doctors think I have) and gotten better.
And from there, it’s hard not to think that I’ll probably be in pain for the rest of my life. What does that look like? How will I survive that? How many more pain-niversaries will I have to shake my fist at the sky babbling on about how I haven’t given up yet?
A part of me hopes the answer is zero. I hope I never have another pain-niversary again. I hope that by this time next year, I’m completely cured.
But a wiser, more jaded part of me knows it’s probably a way higher number than I could have ever imagined. It’s the same wise, jaded part of me that also knows that I’ve got this.
I mean, I’ve made it this far haven’t I?
I’m trying to find ways to be healthy despite the fact that I constantly feel like I’m dying.
Having chronic pain is like waking up every single day feeling like you’ve just been mugged, then hit by a semi-truck, and simultaneously come into contact with the plague.
And when it first hits you, you’re like, “I can’t be expected to function under these conditions. Nobody could function under these conditions. I must call in sick to life.”
But after a month of laying on the couch watching every episode of Burn Notice three times, you suddenly realize you’re probably not going to be getting better any time soon, so maybe you should try to, you know, shower or something.
That’s where the drugs come in. And suddenly, you wake up one day and you’re literally taking six different medications before you even get out of bed in the morning. But hey! At least you’re getting out of bed.
And over the next few months or years or whatever it takes for you, you just sort of live in this drugged-up state of barely existing. It’s how I would imagine high school pot heads hope their life turns out, except without all the stupid stabbing pain in my ribs (or wherever yours may be).
Aside from being high daily, you find all the shortcuts you can. For me, I ended up working from home. I moved in with my mom because doing my own laundry and washing my own dishes is literally too difficult. I shower once a week to save my energy. I shop online. And I never, ever, ever wear high heels. Ever!
On one level, I’m just happy that I’m no longer in so much pain that I literally hope I don’t wake up alive in the morning. But on another, I don’t really like what I see when I look down the long, dark road that’s probably going to be my life for, what? Another 50? Or even 60 years if I’m terribly unlucky?
Which brings me to the yoga. Yes, it’s true. I have started doing yoga. I’m hoping this is the next stage in the chronic pain life cycle, which will be followed quickly by, “Find a cure, and live happily ever after.”
While I’m here though, barely living, I figure I might as well get really good at downward dog. I started with a 30-minute PM yoga session for beginners on DVD. The hardest part is when I had to take two deep breaths in a plank pose. And, guess what? It didn’t suck.
I mean, I can admit when I’m wrong. And I was totally wrong about yoga. I really, really thought that bending my body in new, crazy ways would only make things worse. It’s just the human intuition in me, saying, “You’re in pain, stop doing stuff.” But, with chronic pain, you have to learn to override that voice.
And so, I’ve even done the 30-minute AM session, and I didn’t even die from that either. Plus, I also found another DVD by the same soothing instructor that’s 51-mintues long, and I did that one too, all without any trips to the hospital or anything! I’m pretty excited about the whole situation.
After each session I feel really relaxed, and it seems like I’m going through fewer pain pills when I do the yoga as opposed to when I don’t.
I’ve also started drinking tea. Back in the day, when my body didn’t hate me, I used to say things like, “Tea is literally just dirty water. Ick.” But now, I’m sicker and wiser — and I need to find ways to bring a sense of peace to my wounded body.
So, yeah, tea. It’s got to be better than Coke, right?
There’s a morning tea that seems to ward off the overwhelming feeling of being high that the meds give me. And then there’s a night tea that helps me poop — something I’ve really missed doing ever since my prescription pills took that seemingly natural bodily function away from me.
Truth be told, I am secretly hoping all these new changes will help me lose some of the 50 stupid pounds I’ve gained since getting sick. But if they even help me do more than shower or something, I’d be cool with that too.