Ah, the joys of living with chronic illness!
I've been wallowing in self pity for the past week. I watched a lot of t.v. (mostly Star Trek, the original series), slept a lot, and surfed the internet. My mind was nowhere close to being able to write. And that frustrated me to no end.
Today, though, I've had enough of the self pity. Time to pull myself out of that dark hole and get motivated again. I've got to get this novel done. There's only so much wallowing I can take before I get tired of it and myself for allowing it.
But that's the thing with chronic illness. There is a level of frustration that must be addressed. Simply being positive and sunny every single time I get taken out by a flare isn't realistic. I don't feel good. Period. And I have to acknowledge that. Ignoring it will only make it worse. But while I need to acknowledge it and allow myself to wallow for a bit, this, too, has a limit. I've seen too many people fall into the trap of living in a world of self-pity and "poor me." I don't want that to be me.
I'm constantly learning how to deal with my new normal and I don't know if I'll ever get it right. But darn it, I have to keep trying. That means not freaking out when I see how badly my house needs cleaned, or how I can't get any exercise in yet again, or I fall down repeatedly on my attempts to eat healthy.
The acceptance part, as I wrote about here, is the very hardest part of having chronic illness. We are conditioned to live in a culture that prides itself on exercising regularly and being fit, on participating in all sorts of activities every day, of working hard and going to your job no matter if you feel rotten, on not, on ferrying our kids to extracurricular activities several times a week. That's not my life and it hasn't been for some time, and in particular, the last year. I'm out of sync with most everyone around me. That's a challenge in itself. Why do I keep writing about life with chronic illness? Not for pity. But for understanding. For awareness. And as a way to cope. That's who I am, after all, a writer. And words are how I make sense of the world.
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I'm glad you write about it, because, as I know I've mentioned before my sister has RA and is basically in 24/7 pain, and your posts help me to understand what she's going through too. She tends to hide it, and it's easy to forget sometimes that her joints do not stop hurting, ever. So, I like having someone more vocal about it!
ReplyDeleteHoping you get some good novel writing in today.
(We have been watching Star Trek too! Watched two episodes last night, A Private Little War and Day of the Dove.)
Thanks, DK. :) I am glad that my posts can do some good! Sometimes I will hide it, other times I won't (mostly at home). And there are times, unfortunately, where I show it so that my co-workers won't think I'm being lazy or faking it about feeling so bad. It's so hard to miss this much work without feeling guilty.
DeleteI did manage to get some writing in last night - but in looking back on it now, I'll have to rewrite a lot of it. Oh well. Better than a blank page!
I've been thinking about how to bring awareness to chronic illness, as well. Especially, something like undiagnosed Lyme disease or smoldering bacterial and viral infections. It's so important to recognize the symptoms before the bacteria does serious damage. It's unfortunate that sometimes the symptoms are so broad that it stumps even the medical community. Perhaps the only way to combat the lack of awareness is for people like us with chronic illness to write about it.
ReplyDeleteSo, write on, my friend! You have our attention.
I think you're absolutely right in that we must write about it to bring awareness. That's why I'm so thankful for sites like The Mighty. There is also a fantastic site called RheumatoidArthritis.net that I frequently visit, too.
DeleteMelissa, one thing I've learned is that for writer-types like ourselves, doing just that—writing about the fight—is most cathartic and helpful. It seems to help us work through these things, work out our thoughts and frustrations and, yes, fears. It also helps us (or helps me, anyhow) work through how these illnesses keep us from doing what society and family tells us we 'should be doing', and also, in a weird way, gives strength for those times when someone asks, "Why does it so often take you ten minutes to climb a simple flight of stairs? You don't look sick!" By then we have the 'cranky' response worked out of ourselves like the self- and others-harming shrapnel it is and can respond with grace and maybe even humour, though that depends up on the day.
ReplyDeleteSo do not ever worry about writing about this and publishing it; it's *helpful*! To yourself and others who do not understand. My family accidentally stumbled upon my own writing about my chronic illnesses, were led to do some research of their own, and realized what I'd been going through for so long but preferred writing about to talking about. And again...that's probably to everybody's benefit. (Especially if you are of Irish, Scottish, English, French, and German heritage. Few of my ancestors are really known for holding their tempers!)
I hope this flare-up ends soon; I'm dealing with one of my own right now. They are no fun, but since I know they'll come, particularly as the season changes to winter, I have learned to use those times for other things, and to forgive myself for 'not accomplishing anything'. I goof off on Pinterest (though of course it's mostly cooking, crafting, and gardening stuff I go after, things I'll use later...ahhh, INTJ goofing off!), watch old movies, doze in front of an open window, do simple things I can still be proud of like making flatbread. I file away recipes & ideas saved from magazines in little spurts when I can manage. And I pray a lot more, since my mind isn't as occupied with working (because it's fried), and since we can really only pray for ourselves so much, pray very much for others. That of course *does* put things into perspective, however much I'm struggling at the moment!
Hang in there. This flare-up will pass, and though there are others coming (alas!), with each one you'll be better able to handle it. Doesn't mean you'll *like* it, but you'll have more experience with it. And I'll say a prayer for you, too!
xoxox
Such a great comment, Jen - thank you so much!!! And thank you for affirming my need to blog about my chronic illness. You're right in that so many people do not understand and if I can do a little bit to bring awareness to others, then I'll definitely put myself out there to accomplish it.
DeleteI need to learn to do what you do when flares approach: to use the time for other things. What a great idea. :)
Hoping this latest flare ends soon for you. :)
Hi Melissa, boy are we on the same path! I won't go on but hell ya, keep writing through it. Your sharing is good for you and good for readers too.
ReplyDeleteThanks, Jan! It's tough, but you're right - gotta keep on keepin' on and keep writing!
DeleteYou know a bit about my orientation: keep data about your flares and see if you can figure out how to minimize them!
ReplyDeleteAnd then, when you ARE able to work, try to get to this novel-writing thing that is so addictive and wonderful as fast as you can.
The post-pain, or post-flare, period when you finally feel a bit better encourages relaxing and taking care of yourself and even wasting a little time on doing something to make yourself feel better, and that's fine.
I block the internet so as to give my brain the real option of digging into the current scene - which, as soon as I get going, does turn into doing something wonderful for myself. But it IS hard to get started, especially when you don't know how long the period will last.
Keep trying - that's all you ask of yourself.
Alicia, very good advice. I do need to start keeping data about my flares and see if I can make some connections. I kind of keep track unofficially in my head of things that contribute to them; the biggest one right now is the weather. I don't know if any certain foods trigger it, but I think I'll start writing down what I eat so perhaps I can see a pattern.
DeleteThanks so much for the advice, and thanks for stopping by!