Chronic Pain Diaries

Chronic Pain Diaries “The Luckiest”

I’m lucky, I’m lucky, I’m lucky. It’s a mantra that I force myself to live by. I am lucky. I am well-adjusted. I’m okay. I repeat it every day religiously because if I don’t, if I miss a moment of it, I run the risk of revolving into something heinous. It’s a something that is a wreck, a destructive force that runs the risk of devouring my sense of ‘self’. I don’t know what I would become, but I can’t find out.

Because I am lucky. I am lucky.

Today is a bad pain day. I knew it the moment I woke up. My skin ached, my bones felt like they weighed a thousand pounds each, and my muscles pulsed. I know these bad pain days better than I know good pain days, if there can really be such a thing. I know them and I dread them because they bring me as close to the edge of the ruination of my ‘self’ as I ever want to come. I continue to remind myself, I am lucky, but somehow the words are more hollow. They echo in my mind, absorbed by the heavy darkness that infiltrates all my senses.

I am lucky.

I never understand how it happens. Yesterday my pain was awful too, but for some reason it wasn’t a struggle. My brain woke up, acknowledged the pain, and then kicked it into the back corner where other, more important things could overshadow it. Funny pictures, my Codsworth FunkoPop arriving, lovely emails from people I work with, dinner with the husband. It’s all good, everything is fine because I am lucky. So what changed in the eight hours of sleep (or lack thereof) that my mind, so irregularly wired to handle the concept of chronic, unending pain, now seems like a mountain I can’t climb, let alone reach the summit to plant my flag? Brains are remarkably fickle things, I suppose.

I am lucky. I am alive.

It’s so damn exhausting. On the long walk through the Plus Fifteen from where we park downtown to my office I listen to my Chronic Pain Mix. Songs that are dark, or peppy, or make me feel good. The Lament of Eustace Scrubb by The Oh Hellos; Alright by Pilot Speed; Safe and Sound by Hawksley Workman. They calm the sense of aggravation, of unease. Some songs are so melancholy, I could revert to a teenage frame of mind and think Yes, this song perfectly fits my mood. Some are so energetic, I wonder how I could possibly feel depressed. Because that it was it is. Depression. A big, black swath of angry, vitriolic depression that clings to me.

I am lucky, but I can feel it in my heart, like it is encased by a cloth that is too warm, uncomfortable. It makes me feel sick. And I can’t express it properly, because for over half my life now I have lived with this I am lucky persona. I thrust out my chest, I bang my drum, and I declare Look at me! I am lucky!

The drumming drowns out the little voice in me that is sad and exhausted by the weight it carries.  Lucky as I may be.

I am lucky.

I see others who are also lucky, but don’t know it yet. I speak to them and listen to their frustrations and I nod and commiserate, because on some small level I understand. Yes, it is overwhelming; yes, it is depressing. Yes, it is never going to end. But you will live. We will live. We are lucky. But there is the part of me that knows that I will never be part of their club. Like high school, like all the places I’ve worked, like any social circles, I sit on the periphery of this world because my day-to-day sensibilities do not lean towards sadness and anger and frustration, but relentless positivity.

I am lucky.

Chronic pain is lonely enough as it is. Social isolation is a monster. But to be isolated further from those who suffer as you do? Unfathomable loneliness that eats away at you.

Still, at least you are lucky.

Between Fire and Pines Update and Other Such Stuff

Between Fire and Pines has been out for just under a month n0w, and what a month it has been. At the insistence of one of my managers our store is now stocking numerous copies. I also have my first author signing planned for June 25th. I’ve sold 15 copies in-store, another 15 hardcopies online, and roughly 10 ebooks. So either somewhere out there 40 people are about to start demanding their money back or I’ve just ruined my reputation in the eyes of these 40 individuals.

But through all that, one thing has remained consistent. The feedback has been the same.

I couldn’t put it down. It just kept moving.

I call that a win. From the manager who definitely doesn’t read gore-suspense-thriller to the friend who offered the single review on Amazon, they just had to keep reading.

Now somehow book club has learned of it, and I can never go back to book club. Too bad. It was fun while it lasted.

I’ve paid for a small amount of marketing, which didn’t result in any sales; lowered ebook prices to extreme measures, which did result in sales; stared in bewilderment at the hardcopy of my novel, realizing I can never rewrite it again.

 

And that was when I hit the brick wall. Both metaphorically and literally because I wasn’t watching where I was going. It was bound to happen. I’ve heard people say it time and time again. When you finish that first book you experience this sort of atmospheric burn-out, probably from sheer bewilderment that it could possibly be done and in print. This is a problem because I have 8 more books I need to write, and yes, for those of you wondering, I do have enough ideas for all 8 books. This may be my first rodeo, but I have been training with this horse for thirteen years. Yeah, how do you like them metaphors?

So I hit the wall, and then the wall resulted in a strange mental stress which, perhaps unexpectedly, resulted in an intense, holy-shit sort of physical stress that, for the last week, has made my body just… just awful. Cranky, bitchy, chronic painy awful. Screw you, chronic pain. You’re such a dick.

We got a dog this week as well. Alex’s compensation for canceling the trip to Japan. Her name is Whiskey. She is an 8 year-old shepherd mix and she is derpy as hell.

Stress after stress. There was an article in CBC about Prince’s Fentanyl overdose. They spoke to several doctors who stressed the challenges of dealing with chronic pain patients. They did not speak to any patients themselves though, because… reasons, I suppose. It irked me. Not because what they were saying was wrong. I imagine it must be difficult to deal with chronic pain patients. I agree, opiates are over-prescribed. But if you are going to talk about chronic pain, perhaps CBC readers would benefit from actually hearing from someone who suffers from it.

It upset me, to hear that the conversations were difficult for doctors with no concept of how much of a challenge it is for patients to come to doctors, with all their fears and flaws exposed, and say “I need help.” Then to top it all off be told that, “Hey, it’s as much psychological maintenance as it is the physical pain. There is no magic cure.” You can’t just throw that at someone who is looking at pain for the rest of their life. At least ease them into it, jeez.

Where was I? Oh yes, stress led to pain and pain did a number on my creative juices, and it’s only after a couple days of writing notes by hand that I really feel like I can accomplish something again. Book 2. Because book 1 is finished and out of my hands. Nope. Still surreal. I’m probably 2/3rds of the way through the draft. Plenty of explosions and emotional highs and lows. Less gore though. I needed to tone that back. The ending will be more succinct, and Natalia’s growth as a character will be clear. At least, it will be if you’ve read the first book, which you can buy from any of these fine establishments:

Amazon.com

Amazon.ca

Directly from CreateSpace (So I get more moneys)

You can also check it out on Goodsreads, unless you are in book club. If you are in book club, please forget everything.

 

 

Writing and Chronic Pain: 2 For the Price of 1! Today Only!

I’ll admit shamefully to being AWOL from the internet for the last couple of weeks. Oh sure, there was a witty tweet here or there, but I just didn’t have it in me to sit down and converse with my friends on Critique Circle or post on Facebook or even update my GoFundMe supporters. I thought it was a lack of creative juices flowing. Then I thought to myself, No, if that were the case I would make something explode and everything would be back to normal. I pondered that perhaps it was partially due to participating too much at work (ha-ha! Alliterations!) but then during Christmas I worked plenty, and still managed a post here and there.

Why I wasn’t immediately able to identify it as a mental issue brought about by chronic pain is beyond me. You’d think by now I would instantly understand that chronic pain, and indeed any chronic condition has this inherent ability to burrow itself into your psyche and lay waste to what was once a fruitful and thriving land of social norms. Chronic pain is like an agricultural bacteria that eats away at the crops you spend weeks and months cultivating, leaving you with a wasteland. You don’t want to do the things you love, you don’t want to be healthy, to exercise. You don’t want to talk to friends or be social. You just want to curl up and sleep because at least in sleep you might be able to escape the pain for a few hours, and during that time your brain has a chance to sow new seeds and tend to them.

I let my crops rot in the ground over the last month or so, and I’m not certain why. It was certainly an unwilling choice on my part.

Then again, I always have theories. Some of them even make sense. For one thing, work has been busy and, for whatever reason, people have generally been unpleasant to deal with. I had a gentleman from Manitoba tell me what was wrong with Alberta’s politics just the other day. The irony was palpable; the self-awareness was not. Angry people drain me. They’re like a blistering sun, a thicker, summer heat that dries out the land. Angry people, unfortunately, tend to wear on my mental crops.

But I can deal with the angry people, usually with ridiculous cheeriness. So it couldn’t be them. Not really.

It could be, in all likelihood, pain. Because over the last month or so it has been bad. Despite the glory that is my Cymbalta, I’ve felt twinges of familiar nerve pain begin where my spine is pinching and grinding and generally being unpleasant. The arthritis is acting up, to the point where even wearing some pants put too much pressure on the bones, creates noticeable pain. Too much of it, in fact. I do strengthening exercises; I try to be aware of my posture. Shoulders back, stand up tall. It only hurts more. No excuse, you keep trying because if you stop then the pain wins, and you need to at least feel like you are fighting against it. Sometimes I’d like to let the pain win, but then I wouldn’t be me. That thought is almost as exhausting as the pain itself.

Maybe it isn’t pain. Maybe it is the stagnation of creativity that I’ve been battling since I sent my manuscript to the editor. There have been days when I’ve wanted to reread it, to go over sections, just to remind myself of the tiny details, but I resist. This should, theoretically, be the last week that she has it (unless it needs more work), which means soon enough I’ll have it back and can begin plugging away on the changes that I need to make for it to be presentable to the rest of the world. Easy enough, I suppose. In the meantime I’ve been thinking about book 2, doing research and the like. I fell into a crevasse with it, realizing that something I wanted to pursue, a plot point, just wasn’t realistic. That sent me into a tailspin, trying to come up with a better alternative while still maintaining the character development that needs to happen. I went out and bought myself a notebook that has space kittens on it. That is, kittens in space. It is my idea book where I’ll do my damned best to work through some of these ideas and try to find a more reasonable solution. Normally it is easy for me. Normally I get an earworm that whispers mystical secrets about the universe and also about my narrative, and that is that. A solution. Done.

Not this time. Do I keep this character or that? How does that person die? How will that person live? Explosions or viruses? How much trauma is too much? That last point, at the very least, I’ve managed to, not master per say, but understand efficiently enough that the whole narrative doesn’t seem campy. Still, it feels like stagnation. Creativity at a standstill.

It is an ironic sort of cycle. I use writing to help with the pain, but what if the pain is too distracting to allow me to write? What do I do then?

giphy

 

Chronic Pain Diaries: The Longest Cycle

Sometimes I imagine that I am in a time loop. That my life is only capable of extending to a certain point before I reach a door that is meant to represent change. Instead, the door leads me directly back to the beginning of the cycle. I walk, and run, and prance my way through everyday events until I reach that damnedable door. The whole process begins again.

Today was a bad pain day, fitting given that I had my appointment with the Good Doctor. It was the sort of morning where it felt like the pain was leaking from my spine and staining my hips, my thighs, and even my ass. My ass, for god’s sake. This is mechanical pain, coming from the arthritis. I assumed it’s because the weather is properly cold now. This mechanical pain is the sort that claws into your body and doesn’t let go no matter how much morphine or baclofen or kittens you throw at it. It’s a vibrant, hot, red and black pain.

In the last two years my pain has gotten worse, and with it I assumed so did my curve. Perhaps the only highlight of the visit was learning that my lower curve has settled nicely at it’s 45-49 degree range. It hasn’t moved and likely won’t anymore. Hooray for me!

But at the same time it was some of the worst news I could have imagined. 50 degrees is the magic number. That is when the specialists go from shrugging their shoulders and saying “meh?” when you ask about surgery, to rushing you into the OR and rubbing iodine over your back themselves. Don’t get me wrong. I don’t want more surgery. The concept of my spine being almost fully fused is troubling.

But I’ve learned to live with a fused spine. I’ve adjusted my life to it and I get by even without being able to bend over to tie my shoes. What I still find myself struggling with every day is the inconsistencies in pain. One day is good. One day is bad. One day is puppies and cotton candy and the next the puppies have rabies and the cotton candy is actually some sort of snake that is propelled by rockets made out of spiders. And while I can predict when snake-spider-rocket days might occur, it’s fairly hit and miss for the most part. And not knowing when I will be in that sort of pain is exhausting. You feel as if you can’t make plans, can’t make promises. You never know what sort of person you will be when you wake up in the morning.

Because the pain comes out of nowhere and it infects your life like those damned rabid puppies spreading through a daycare.

If the doctor has told me that the time had come to fuse my lower spine I would have been a-okay with that, because there is a slight possibility that fusing those two vertebrae would decrease some of my mechanical pain.

Maybe.

Then again, maybe not.

So I open the door and I walk through, back to the start of the cycle. I look back and see all my friends and family walking through the same door, yet somehow being able to reach another path that isn’t open to me. I have so many questions. When can I finally step onto that new path? What preparations do I have to make? Can I speed up this process? No. I am shunted back to the start of the cycle. Another year of waiting, of snakes and spiders nibbling on my nerves and burrowing into my body.

I’ll give myself one day to be sad, to feel a bit of self-pity that this will be another year when this cannot progress. I’ll put all my focus onto writing, of being a good partner to my husband and support him as he has supported me not only today, but every day rabid puppies and spider rockets strike me down. I’ll work and save, and in October I will go to Japan and see another culture with towering mountains and verdant plains. I’ll snuggle my cats when I feel sad and knit my blanket when I am lazily watching TV.

And I will have pain, every day, because the cycle is just starting again.

Chronic Pain Diaries: That Old Waiting Game

On Friday I have my appointment with the good doctor to get my spine poked and prodded. First time in nearly two years. I didn’t make the connection before, but since I’ve made an attempt to be more, shall we say, self-aware, about what my body is doing and trying to tell me (insert witticism re: the separation of body and spirit), I’m very, very aware of how damn nervous I am.

My tummy has gone full wibbly-wobbly, and I’m having a difficult time kicking the nerves that have settled into my brain. Why my brain decides to go all negative-nelly every time appointments come close when the rest of the time I am, generally, fairly positive, is beyond me. Why now? Why worry about the worst outcomes now instead of focusing on what will probably be good news? Hell, why not stay completely neutral until I have an answer?

I suppose after so many years of getting the obligatory check-ups at the hospital and receiving less than stellar news regarding the state of my spine, I just have a tendency to expect the worst. I could probably talk myself out of it, but the trouble is that this sort of nervous, negative, niggly knot in my noggin (HA!) permeates every aspect of my life. What is even worse is that I know it. I am like Muggy, the self-actualization Robot from Fallout New Vegas DLC Old World Blues who knows that his only purpose in life is to collect dirty mugs, and he hates doing it, and he despises the fact that he knows it is his only purpose. I know how my negativity impacts those around me, but try as I might I can’t kick myself back into shape.

It is classic Chronic Pain mentality. I don’t want to go to work today. I want to curl up at home with a blanket, a cup of tea, and a book. I have not one but two girl’s nights that I’ve been invited to this weekend and the thought of going to either makes me sick to my stomach because I can’t imagine a state of happiness existing, even temporarily, after my appointment on Friday.

To me, the hospital seems like a whirling black hole that I have been drifting listlessly towards for some time. Now I’m being pulled into the void and I can’t bring myself to focus on what is on the other side.

It’s problematic, because this is exactly what we are taught to avoid in CP classes. We aren’t supposed to get caught up in the negativity, but instead make a concentrated effort to imagine… well, happiness. We meditate, listen to music, write, draw, create and destroy. We force ourselves to become part of the world around us by contributing to its beginnings and ends. We focus on anything other than pain. Maybe it’s been so damn long since I’ve had to fight this mental battle, but the idea of being part of the greater metropolitan Earth makes me feel exhausted.

I know this is just a bad day, maybe two. I know it won’t last because I’m not the sort of person to let it dig under my skin and fester. I know all this, courtesy of perfectly rational thought, and yet I cannot shake the nerves. The more I try to distract myself with the larger Universe, the stronger the pull of the black hole. Whatever is on the other side, good or bad, surgery or another year of waiting, I have to find a way to get back to the old me. What is particularly troubling is that I’m not entirely certain if the old me is happy-go-lucky or doom-gloom-and-shrooms (I was trying to go with rhyming. In reality, I find fungai to be disturbing. Largest network of connected organisms? Creepy as hell is more like it.)

Two more days until I cross that event horizon. I’ll see you on the other side.