7 Things They Don’t Tell You About Living With Chronic Pain

Last night, amongst the drugs and the pain and the madness of sleep deprivation I had a thought. “Golly,” I said to myself, “Why don’t I do a blog post on X Number of Things They Don’t Tell You About Chronic Pain?” Brilliant. I am so smart. I am like a giant ol’ box of Smarties, particularly red ones which, as we all know, are the best.

There is No Magical Cure

When I finally got into the Chronic Pain Center in Calgary I got a mad shock when my doctor told me, flat out, that they couldn’t make it better. As a naïve 21 year old I was under the impression that his role as a doctor was wholly to make me better, whether it meant hacking and slashing at my spine with a comically large knife, or employing some form of black magic in which I had to drench myself in the blood of a lamb before dancing naked under a full moon. Turns out neither option was available, and after I cleaned up and put my clothes back on I was told the honest, brutal truth. There is no cure from Chronic Pain. That’s what makes it Chronic. If there was a cure, it wouldn’t be Chronic Pain. It would be mildly annoying pain that disappears in under six months thanks to medical intervention.

No, Chronic Pain has no magical cure. No fancy-shmancy answers. Unfortunately for a lot of people at the Chronic Pain Center (CPC) their pain is the result of fibromyalgia, which means not only is there no cure, but there is no exact answer as to why they are in pain. As frustrating as I find pain, I’m lucky that I can say my pain is the result of multiple spinal surgeries, degenerative arthritis and gnomes in my spine. Damn those gnomes.

Speaking of luck….

The Younger You Are, the Luckier

Don’t get me wrong, if I could go back in time and tell my surgeon just what I thought about having multiple major surgeries I would. No, that’s a lie. I wouldn’t. Fact of the matter is that by having all my surgeries before the age of 20 means that I wasn’t set in my life. I wasn’t sure what I wanted to do yet, I didn’t have thousands of dreams and aspirations that required full mobility via my spine. By having my fusion at the age of 13 I was given a marvelous, albeit smaller, list of life choices. I knew, almost immediately after my first surgery that a career as an RCMP member was now out of the question. No problem. I was 13, it wasn’t as if I had made up my mind by that point. My having my life irrevocably changed in a major way at a young age I understood that my life would now have to revolve around a different set of choices, and I was okay with that. We work with what we have.

Compare that to someone in their 40’s or 50’s who has just been in a horrific car accident. They’ve lost a leg, or now have severe chronic pain. Worse than that, everything that they have learned and lived over the last 40 years is now essentially useless to them. Their job? Probably going to have to change. That education that they used to get that job? Oh snap, also useless! Everything they’ve ever known and relied on for consistency in life is now gone, and the idea of starting over from scratch at that age must be incredibly ominous if the support group I took part in is any indication. Middle Age Chronic Pain is scary because suddenly you have to rethink everything. Youth Chronic Pain is scary because you are a youth and can’t critically analyze why you are pain, but at least you can easily rearrange your plans for the future… because the future hasn’t happened yet. Or something equally as meta. But as easy as it is to adjust to the changes in life you still have to compete with Chronic Pain flare ups, and let me tell you…

Flare Ups Are F*cked Up

If you’ve got a good Chronic Pain doctor like me, the chances are you have an excellent array of drugs to turn to on a daily basis. Day-to-Day drugs are fine, great even! But there is something even the heartiest of drugs cannot compete with. Flare ups are essentially moments when your pain has a serious and unexpected jump up the pain scale. Example: Usually I am at a 7 on the scale, which is like “Wow I feel like some small child is punching me directly in the lower back, but they have weak muscles because they haven’t had a lot of milk so while the pain is constant, I can totes deal with it.” The last two days, however, I have been at a 9/9.5, which is “I am about to grab that giant comical knife and stab my spine until my bones can be easily harvested for an ossuary.” By definition, a flare up.

Nothing can prepare for a flare up because they come out of nowhere, and the amount of pain you will experience will always be new, different, and awful. Some people find flare ups develop from diet, exercise, stress, etc. But sometimes flare ups just happen because you’re already in Chronic Pain so why the hell not? I can’t speak for every CP sufferer out there, but I know for a fact that not all the morphine I am prescribed can make it stop, which is why I am sitting in class right now contemplating how I might use the computer cables at the front of the class as a tourniquet to tie off my arteries so I can tear my spine out. I was not told about flare ups before going to the CPC, and while I’m grateful for the information, I would also just like to die a tiny bit right now. And that would be fine, except…

People Don’t Take It Seriously

I don’t mean average people. If you’re lucky your friends and family will accept these changes in your life, and if you are smart you will learn to communicate clearly about your pain without resorting to violence. As an overall health issue, however, Chronic Pain is remarkably understated and avoided. In Canada there are only roughly four, four specialty clinics that deal in Chronic Pain. That means those clinics have doctors who have trained in the area of Chronic Pain Management. These aren’t giant clinics, either. At the CPC I attend I think there are only about six doctors, as well as their teams of specialists (including a nurse, physio, kinesiologist, psychologist, and pharmacist) that can deal with patients. The problem with this is that the purpose of the center can not be constant monitoring of patient care. Instead, they teach you what you need to know to deal with it yourself and then send you on your merry way. It’s not the most positive way to go about it, but on the other hand if the wait-time for a patient to get into the clinic is roughly 2 years, they can’t exactly stand around waiting for you to accept your new condition in life.

And yet recent statistics suggest that 1 in 4 people will experience some sort of Chronic Pain in their life (that is, pain that extends beyond six months. It may not necessarily be forever, however.) The statistics are staggering, and lead me to wonder why there aren’t more doctors specializing in Chronic Pain. It might just be because they hate telling you that….

Self-Care Is the Best Way

Like I said earlier, there are no magical cures. They can prescribe medication to help deal with the symptoms, but it will never make the pain go away for good. At our local CPC we are given access to a series of group sessions. They deal with everything from sleep management, healthy eating, exercise, and, most importantly, self-management. That final topic is the first group session you are required to attend, and they don’t mince words. If you want to feel better, you will learn to do it yourself. They teach us how to take care of ourselves through positive actions, doing things we love to do, getting enough sleep, finding enjoyment in life, practicing meditation. Basically, we are exposed to every hippy-dippy option that might help, and are then told to find what works best for us. The overall feeling in the group I attended was that this was utter bullshit, but these were people who hadn’t yet accepted their new lot in life. They were looking for solutions to their problems, and answers for their pain. I think most of my fellow group members walked out of our 12 week session feeling even more depressed. Me? I felt awesome, because like I said earlier, I had been dealing with my pain for a long time, since a young age. All the things I loved to do, that made me feel good about myself, I had been doing since my spine was fused. I was writing, playing video games, curling up with a good book and reading. My flare up day comforts were also my every day comforts, so I was in my element. Bring on the self-management. I got this. That doesn’t mean that every day is good however…

Dark Days Are Super Dark

I’ve had some really bad days. Days when I couldn’t get out of bed because of a flare up. Days when I couldn’t get out of bed, not because of pain, but because of severe depression. Even if you are a sarcastic, smarmy, positive ray of sunshine like me, you still have to deal with bad days. I’m fortunate that part of my medicinal treatment involves Cymbalta which, while also helping with nerve pain, also happens to be an anti-depressant. I thought that would make a huge difference in my dark days, but as it turned out, it didn’t. I still had dark days, same as before. My theory is that because I don’t have a general, every day chemical imbalance which results in depression, there is nothing in my brain for the Cymbalta to rewire. And, plus side, I rarely get nerve pain! Hoorah!

But those dark days, let me tell you. They are bad. There’s a sense of helplessness that accompanies the pain on those days, where every little negative experience compounds on top of the pain, and it takes you to some weird places. It is a struggle to get out of those dark places, but it is one that you have to active be a part of. You can’t rely on other people for your happiness on a daily basis, so why rely on them during the bad times? It was the one thing I tried to impress upon the members of my group: If I want to be happy, I will find a way to be happy. I will rewatch Colbert Report episodes, I will write a new chapter, I will pet my cat and blow raspberries into his fluffy belly. I will be happy because I want to. I am more than the sum of my parts. To get to that point, though, there is something you have to do first…

To Accept Who You Are Now, You Have to Mourn Who You Were

Chronic pain means there is a huge change in your life. A giant, awful, painful, frightening change. You lose a sense of who you were, of what made you you. You are suddenly thrust into the role of a different person who looks like you, but doesn’t think, dream, or live like you. And that very scary concept just might be permanent.

So you have to take the time to mourn who you were, to go through the stages of grief and bury all the things that have been taken from you. Bury them, honor them, remember how far they brought you in life. And then start anew, because you have to, simple as that. You have to find new hobbies, new jobs, become reeducated, and take what you have now, in your new state, and rock the hell out of it.

I may be at a 9.5-God-I-Swear-I-Will-Rescue-More-Orphans-Than-Angelina-If-You-Just-Make-This-Stop, but when I go home today I am going to write an awesome chapter and play Final Fantasy VII and read up more about Borderlands, the Pre-Sequel, and I will cuddle my cat and have a cider and get a big ol’ hug from my husband who supports me so well, and I will be happy. Because 12 year-old Kathleen is long gone, and 25 year-old Kathleen is a sarcastic ass.

And no matter how much pain I am in, I love sarcastic ass Kathleen.