So, a few days ago on Twitter, I got slammed by someone for posting this meme, stating that I was unsympathetic to/lacking empathy for those who have chronic pain, dismissing their disability and making them feel guilty not only for sleeping but just for being alive, so the meme is “non-inclusive and harmful.” He kept arguing with me until I simply walked away from his attack, but it got me to thinking, and those thoughts led me to start missing sleep thinking about them. Since I can’t afford any more sleep issues than I already have, I thought I’d tackle actually getting these thoughts down, hopefully in some kind of order, and maybe someone, somewhere, will find them of some kind of interest, or even benefit.
Disclaimer: I'm not attempting to make any medical or psychiatric anything. I'm simply sharing my thoughts on dealing with chronic pain, specifically from the perspective of a writer. This is MY experience with chronic pain. Every individual experiences chronic pain differently, responds to interventions differently, deals with chronic pain differently. What works for me might not work for you, and vice versa.
I’ve had chronic pain from spinal stenosis since 2000 (well, it started before that… it was diagnosed then), as well as osteoarthritis of my right knee, meaning there is no cartilage (none, zip, nada) between the bones, and yeah, ouch. The back and knee like to work together to make my life jolly hell. I’m never without some degree of pain from my back and hip; the knee only makes it worse. When I say “never” I mean that quite literally. I live with a baseline pain level of around 3 on the standard pain scale of 1-10. This is by choice; pain meds make me groggy and mentally fuzzy and I don’t like that more than I don’t like the pain, so I chose to live with a certain amount of pain, understanding that sometime this will probably change as I get older. But for now I can, so I do. Virtually any activity at all (including laying down to sleep) causes an exacerbation of this baseline pain. Within 5 minutes of walking or standing, the pain begins to escalate sharply; 10 minutes and I’m clenching my jaw and limping badly; 15 minutes and I’ve turned white as a sheet and started sweating and leaning on anything there is to lean on, if I haven’t already fallen. Even those handy-dandy electric carts at the supermarkets and larger stores exacerbate the pain due to the jolt of stop/start as well as the turning, bending and twisting from taking items from shelves and putting them into the basket. Not that I’m complaining! Without those carts I wouldn’t be able to go grocery shopping at all.
So I spent years feeling sorry for myself (yes, I did! Who the hell wouldn’t?!) and crying because of all the things I’ll never be able to do or never be able to do again. There’s all kinds of medical and psychological processes that go into acceptance, and I’m not going into all that; after all, you probably already know all about that if you have chronic pain or any kind of chronic illness. But with acceptance comes a whole new area of endeavor: Learning to live with it. Learning to be positive despite what we have to deal with. Even, sometimes, learning to adjust our dreams to fit our circumstances. Easy? HELL, no! But I saw that I had two choices: I could cry about the things I couldn’t do… or I could find the things I could do and find a way to do them. (P.S. sometimes I do still cry about the things I can’t do… and that’s okay too. See Directive #5 below). So I became all about finding ways and means and focusing on what I can do, not what I can’t do.
One of the things they taught us at the pain clinic I was sent to was about trade-offs. When you are hurting and there’s something you want to do, you look at the probable pain level that’s going to be involved. How bad is your pain at this moment? How bad will it get if you do this thing you want? And, importantly, how long will it take for your pain to recover to baseline afterward? How badly do you want to do this thing? Is it worth the pain to the degree and length of time of recovery to do it? You take these things into consideration, and make your decision to go ahead and do whatever it is, or opt not to.
Sometimes, of course, there is no choice. There are days any choice is ripped right out of our hands because we HURT, and there’s no getting around that. There are days it’s so bad we HAVE to take that medication… providing we’re one of the lucky ones who can afford it in the first place. My disability is service-related, so I get everything I need through the V.A., and you better believe I’m grateful!!!!
If all that isn’t bad enough, with chronic pain comes sleep issues. You don’t have to have chronic pain to relate to how pain of any kind doesn’t lend itself well to sleep. I can’t lay down more than about 5 hours before my back/hip pain wakes me up; if I persevere because I really reaalllyyyy want to sleep, by 7 hours it starts to escalate steeply. Basically, pain drives me from bed (and it doesn’t always take 5 hours either). Sometimes I just want to cry because I want to sleep so bad, and I’ve never managed to master the art of sleeping upright or in my recliner.
I actually consider myself lucky. Lots of people with spinal stenosis are unable to sit for long periods of time and have to lay down to have relief. I’m lucky in that I *can* sit (albeit only in very good, supportive chairs) for long periods of time. It’s laying down/standing/walking that exacerbates my back. Perfect for a writer, and yes, I’m lucky if I *have* to have chronic pain, at least I can still sit up and be at the keyboard. After all, it’s the only life I have. In choosing to live with baseline pain and try to avoid pain meds, I also gave up any kind of social life or “getting out” … because that causes pain that escalates to crisis point requiring medications or even a not-so-quick trip to the ER. A couple of months ago I went out to lunch at a restaurant with a group of ladies from my community, and spent the next 3 days in bed on pain meds… from doing no more than sitting in the restaurant for an hour and a half.
Okay, so let’s address the accusations from the guy on Twitter. Basically, where we digress is on attitude. I don’t lack empathy, nor do I refuse to see things from a different perspective; believe me, I’ve been on that side of things. I spent years dealing with massive depression, because I just could not accept that this was going to be my life from now on. I managed to finally achieve a kind of acceptance (which is not to say that I like it!), and I was finally able to begin to learn to find positive ways of looking at the things I was able to do, working around the pain. Basically, I chose to be a glass-is-half-full person, and this fellow is clearly a glass-is-half-empty person. I’d far, FAR rather share my positivity and be upbeat and supportive, than to dwell on the things I can’t do and tear down people who manage to find ways to be happy despite a crippling disability.
Now… as far as this particular meme is concerned, I actually found that one night when I was sitting here at the computer, literally crying because I wanted to be in bed asleep but my back and hip and leg were on fire, burning and hurting so badly it drove me from bed after about 3 hours of (trying to) sleep, and I didn’t want to be here, damn it! I wanted to be in bed asleep. But here I was, cruising the web trying to distract myself, and believe me, writing wasn’t happening either. Then I happened across this meme. And I looked at it, and I started laughing, and I was just like: “Yes!! Yes!! I DO have a dream, and I’m going to follow it!” And… despite the pain… I suddenly felt totally positive and yes, enthusiastic about writing! I called up Scrivener, and started writing. Was it my choice to be out of bed writing to follow my dream at that particular moment? Of course not! But somehow, in some way, by taking it on as a choice (even though it wasn’t), I was able to turn it around in my head into something positive. The physical situation had not changed at all; only my attitude toward it, thus changing how I was able to cope. I went from crying and feeling sorry for myself to happy and productive… even though I was still in severe pain. (This makes sense in my head, but is very hard to explain in words)
What it really comes down to is this: My dream is to be a published author with all my books published and, hopefully, a faithful readership who loves what I write and wants more. To achieve that dream, obviously, I have to write. I also have disabling pain issues that are not temporary and not going to ever get better. But dammit! I want to be that sparkly, star-shaped supernova, not beaten down into beige obscurity.
So I set up a system of priorities. Again… this is what works for me. I’m not claiming I speak for anyone other than myself, and I’m not claiming this will work for anyone else. I’m putting this out here, so that someone, somewhere, might think this makes sense and might work for them, and want to try it on for size.
- When I am both mentally and physically able to sit at the computer, writing is my #1 priority (granted, with sidetrips to Twitter and SecondLife). At those times when the words aren’t coming, that’s when I do what housekeeping or cooking or other chores need to be done. I have these set on a 5-minute timer, so I don’t overdo and lose writing time because I worked myself into a pain exacerbation.
- If I’m not physically able to be at the computer, I read what I’ve already written, keeping my headspace in my story; I utilize a hand-held recorder and/or the speechnotes app on my phone to take notes of various kinds. I brainstorm, and try to think what kind of events I can come up with to fill in those three days between my hero and heroine’s first date on Tuesday and the BBQ they’re invited to on Saturday. Or even, heck, read a book!
- Then there are times I’m able to be at the computer physically, but mentally not able to write because my brain is fogged by meds or lack of sleep, or just because I hurt so bad I can’t concentrate. That’s when I do various associated activities that don’t take the focus/concentration that writing requires: I go to google and do research for my stories, saving URLs for later; or I go to Pinterest and find pictures that speak to me of my characters, or settings, or anything that remind me of my story in some way; and of course there’s always FB groups. Sometimes I can actually work my way into being able to write; sometimes I can’t. It’s really just the luck of the draw. And of course if I’m really desperate, I can go alphabetize something and assuage my OCD-ish tendencies, or add any new kindle or DVD purchases to my Excel spreadsheets (yes, really… what can I say?). Generally reading a book is kinda out, due to that mental fog going on, but sometimes it’s possible. What I do not do is sit there staring at a blank page in Scrivener when I know it’s not going to happen. This is not something under my control, and sitting here anyway is just going to make me feel bad, and it’s all downhill from there.
I have what I like to call directives that I set up over the years to try to live by, and thought I’d share these with you.
PRIME DIRECTIVE : Don’t ever beat yourself up or criticize yourself because you can’t do things that you want to do but are physically unable. This is not your choice. You didn’t sign up for this. It’s the hand you’re dealt, and you don’t get to turn it in for a new one. You do the best you can, when you can, and there’s going to be times you just can’t, but it’s not your fault!
DIRECTIVE #2: Do not compare what your word count (or anything else!) to what someone else does. Your experience is not their experience. What works for them may not work for you. This is not their fault, nor is it your fault; it is, in fact, not a fault at all. It’s just how it is. You just can’t look at someone else’s word count and feel bad because you haven’t matched it because the pain was so bad you couldn’t write that day. You did what you could. Strike the words “but it wasn’t enough” from your vocabulary! It was enough for you! So pat yourself on the back for what you were able to do, because believe me, with chronic pain, having been able to write anything at all is an extraordinary accomplishment. So you got only 500 pages written. First off, also strike “ony” from your vocabulary, and reward yourself for those 500 pages!
DIRECTIVE #3: Try to find what works for you. Go ahead and see what others with chronic pain do to write despite their issues. If you think something might work for you, try it and see! If it doesn’t work, accept that it doesn’t work for you, and be glad for them that they found something that did work for them.
DIRECTIVE #4: If you do find something that works for you… SHARE IT! Maybe your work-around is just the right thing for someone else who’s out there struggling to find a way to write despite chronic pain and the issues that it brings.
DIRECTIVE #5: Feel sorry for yourself! Yep, that’s what I said. For heavens sake, look at what you have to deal with! You have a right to feel bad about it!! Allow yourself to wallow in those bad feelings, let them out…. because if you hold them in, they’re going to just build up and up and up until the dam breaks. So when I start to have those feelings, I choose to allow myself to have a “Pity Party” and indulge. So go for it… but set a Timer on it. For “x” amount of time, you get to feel just as bad as you want, and rant and cry and yes, even whine if you have someone to listen. And when that Timer goes off? You pack it up and get back to your life as you deal with it. I’m the first to admit, when that Timer goes off, there are days I want to throw it at the damned wall. Okay so then? I have an Alternate Timer. If I choose to (notice, I intentionally make it a conscious choice), I allow myself to continue my Pity Party until bedtime. But I absolutely, positively must be over it by the time I get up the next morning. It is not allowed to continue into the next day. I get up out of bed and keep on keepin’ on.
I’m not going to tell you not to let it get you down when you can’t write. That’s impossible and unrealistic. Of course sometimes you’re going to feel (insert negative emotion of choice) when you can’t write as much as you’d like, or even can’t write at all. That’s because you’re human. In the end, all we can do is the best we can given what we have to deal with, and no one can ever ask for more than that.