No, I’m not talking about pacing in regards to the story itself – though that’s important, too. Today I want to talk about the impact my chronic illnesses have on my writing. This is a little bit of a personal post, I suppose, digging into my daily life rather than just my writing – but my writing is such a huge part of my daily life, and this is the other huge part. This is the silent, unseen monster that keeps me from taking over the world. Maybe it’s doing you all a favor by keeping my power minimal, who knows! 😛 But living with it frankly sucks.
First off, let me introduce you to the culprits by name. Fibromyalgia, probable psoriatic arthritis (in the process of getting a diagnosis from my rheumatologist), bipolar type II that’s mainly manifested as depression and anxiety, some vague and undiagnosed cognitive difficulties (I have trouble concentrating and focusing on things that I feel goes beyond the fibromyalgia cognitive symptoms), a minor heart rate disruption I’ve had since I was 11, and all the myriad symptoms that go along with those diagnoses.
In case you’ve never run across fibromyalgia, which is becoming sadly more common from what I can tell, it’s a bitch. It runs hand in hand with chronic fatigue, which you can either say is a symptom or a separate disease. I really have no idea whether I have chronic fatigue because I have fibromyalgia, or whether I have chronic fatigue and fibromyalgia. Either way, I am tired all of the time, and it goes bone-deep. Getting up and moving from one spot to another is, on a bad day, a herculean effort. In addition to the fatigue, fibromyalgia’s main manifestation is widespread, chronic pain. It’s hard to pin down – it likes to move around. Some days, it’ll be your shoulder. Some days it’ll be your shoulder and your back. Other days it’s your arms and legs. It’s really a matter of “what’s screaming the loudest for attention right now”? By that, if my meaning is not clear, I mean that everything generally hurts all the time, but the pain tends to move around and get worse in certain areas, so at any one time it comes down to what hurts the most.
The pain from fibromyalgia is mainly muscular, but it can also cause lots of other symptoms. Migraines, IBS, wobbly balance, sensitivities to light, sound, and smell, the ever-present, damned fatigue, insomnia or even sleeping too much, forgetfulness (I actually forgot to list this one and had to come back) and difficulty concentrating… I mean, the list goes on for twenty miles, and hand to the Goddess, every one of those symptoms is real. We’re not making things up for attention or just lumping every disease into one, though sometimes it does feel like we have every goddamn disease known to man. It’s tricky to diagnose, because there’s no definitive test for it, but we have very tender trigger points that, when pressed, HURT LIKE A MOTHERFUCKER! This is one of the diagnostic tests. There’s also an interesting test with an instrument that reads how much pressure you’re exerting with it. This is what made my first rheumatologist go “Yep, you’ve got fibromyalgia.” He pressed on a spot on my elbow with it, slowly, and told me to tell him when I first felt pain. It didn’t take very much pressure at all. Then he showed me on himself where he felt pain. I think my reaction was to burst out laughing – or at the very least, I felt like it, because he pressed the meter all the way down as far as it would read, and said “It almost hurts now.”
If that sounds a little bit hokey, well, you have to get adaptive when dealing with shit like this. If it’s too much to suspend your disbelief, I don’t have the spoons to convince you that it’s real. (The Spoon Theory – ever heard of it? It’s an analogy written by Christine Miserandino about what it’s like to try to get through a day as a chronically ill person, using spoons as energy currency. It’s highly recommended reading, and not very long.)
So that’s fibromyalgia… And you all know what arthritis does, even if you (I HOPE!) do not know what it’s like personally. You know what it’s like to be tired, even if you do not know what it’s like to be deep-down exhausted all the time. Depression is a common enough enemy that I don’t feel I need to expound on it here – anxiety, well, it’s just nervousness that doesn’t serve a useful purpose and won’t go away until it’s damn good and ready. And then I’ve got this heart thing I mentioned. There’s nothing, apparently, wrong with my heart physically, but since I was a kid, it’s raced out of control with little or no provocation. I’m talking resting heart rates of 120-150 beats per minute, no factors I can point to that would increase the rate, and when I stand up or move around, it gets worse. This is without medication, and I’m currently in the process of finding one or a combination of medications that will work to keep the heart rate manageable. It’s weird, and exhausting, and dealing with doctors is frustrating. I won’t even go into my latest cardiology visit, as that’s an entirely different kettle of fish.
Then, on top of the physical woes and the emotional ones, I’ve got these vague cognitive difficulties! Maybe I hide it well, but there are a lot of things I have trouble with. Beginning about a year and a half ago, I suddenly started having trouble finishing books, movies, TV shows, anything like that. My knitting projects took longer and longer. I just couldn’t concentrate. I honestly feel so dull and slow, and I don’t know why. This is something I’m in the process of getting figured out, so right now I don’t have any answers at all. I’m beginning to get better at finishing books again, but I’m still a MUCH slower reader than I used to be, no matter how gripping the story.
I swear I don’t go looking for new things to “add to my collection.” They just seem to fall into my lap. And every day, they affect my writing. You can begin to imagine, from my description, what it might be like to try to move around in everyday life with limitations of ever-present pain, fatigue, cognitive difficulties, and sometimes depression and anxiety for “good measure”. I don’t get out much. Writing is my major escape. But there are days, like this morning, when I wake up and my brain says “nope.”
I wrote a paragraph and a half this morning after I woke up before the fatigue and exhaustion I’ve been dealing with (the flu really didn’t help with that) set in hard. It feels almost like a cloud descending over my mind. When you’re really tired, it’s hard to think, right? Right. Try pulling creative “genius” out of your ass when all you want to do is fall over and lie there thinking about how much you hurt and how tired you are. I can manage this blog post because it’s established information – this is my every day, I could write a post like this half-asleep – and because it’s informal. But my brain simply said “…what?” when confronted with the idea of continuing the thread of my novel this morning.
So I set it aside, and came to wordpress. But you know what? That paragraph and a half is a paragraph and a half more than what I had when I woke up this morning. Chronic illness be damned; this book will get written if I have to write it crawling. It’s why I’ve set my goal low for daily word count – 750 words isn’t an awful lot, but it’s a feasible goal for me most of the time. And when I fail to reach that goal, I remind myself that all progress is worth having (to bastardize a quote from the magnificent Jacqueline Carey series, Kushiel’s Legacy).
I may be sick, and it may be forever. But it’s not going to stop me from doing what I want with my life. I took a different path than the one I might have. Every twist and turn looked like a sharp one at the time. Every diagnosis seemed to change the path laid out in front of me. But it’s not a horrible life by any means. I deal with some horrible things, but my life is not bad. There is happiness in it. I have a loving husband who means the world to me and supportive family I couldn’t do without. I have a beautiful, sweet cat. I have many friends, even if I don’t get to physically see them much or ever. And I have hobbies I can do despite my illness. I knit, as you know. I also crochet, embroider, paint (sometimes), play video games, read books, and in the past I’ve made jewelry, candles, and other things. I’m also an amateur photographer though I can’t get out to take pictures very often. There is richness in my life, even if I can’t live it at the pace I’d like to. So this post is a huge middle finger to chronic illness, okay? Let’s take a good hard look at it and say “Fuck no, that’s not going to be anywhere near enough to stop me.”
Pacing yourself is necessary when dealing with chronic illness. It’s not fun, and it’s not easy, even after a decade plus of dealing with the limitations and having time to “get used to” them. Here’s the thing, you never do. It’s always a pain in the ass. But you can learn to get around them. So this novel, all of my future novels, will get written. It might not be at the pace I desire, but it is going to happen. It’s happening, even on slow mornings like this one. That paragraph and a half will grow into thousands more words if I keep watering and tending the garden I planted it in. And that I most certainly will do.