I’ve been in reactive mode for as long as I can remember; things keep happening, and I do things in response. For years I’ve felt like I’ve only just been keeping my head above water. Now, I know shit happens in life and I can’t necessarily control everything, but I’d really like to break out of that cycle.
Yesterday Sandy and I were looking for a laugh and searched for “how to adult” videos on YouTube, when we came across this.
What I thought was going to be funny ended up really opening my eyes. I don’t think I’ve been victimizing myself, per se, but considering all the trauma I’ve been through, it’s really easy to fall into a trap where I feel like bad things just keep happening to me.
It’s time for good things.
I keep seeing all of these indie authors making it and thinking things like “When is it going to be my turn?” and “What am I doing wrong?” I see friends buying houses and going on vacations, and I wonder if those things will ever happen for me. It’s not my fault that I got sick or that my pain is so debilitating I can’t hold down a “normal” job, but there are things I can control.
In December I got a new phone and one of its features is a bedtime and wakeup time. It’s been a game changer for me. All I had to do was tell it how many hours of sleep I wanted per night, then fiddled around a bit with a dial until I found times that I could live with. Since then, I’ve been going to bed around 11 p.m. and waking up at 8 a.m. almost religiously. I say “almost” because I have it set for weekdays and let myself stay up and sleep in a bit later on weekends. Aside from a few exceptions—painsomnia, events, Stardew Valley or Netflix rabbit holes—I’ve been sticking to this for months. And you know what?
I’ve been much more productive. I sleep better. I have more energy. I’m in a better mood.
I still have pain, I still have fatigue, I’m still sick, but combined with my new meds, I’m in a much better place. And all I did was change one small thing.
Kalyn’s video got me thinking: What if I took things a step further? Rather than stumbling upon and playing with an iPhone feature, I can make some conscious tweaks and improve my life even more. I sat down and thought about the kind of life I want, and I came up with this list:
I want to be the kind of person who will write every day.
I want to be the kind of person who is able to comfortably pay my bills and buy necessities.
I want to be the kind of person who has my own car.
I want to be the kind of person who can buy a house.
I want to be the kind of person who will regularly treat myself to a manicure and pedicure.
This week I wrote every day. I didn’t set a daily word count goal (though I do like to write at least 1K words). I was just happy with myself as long as I wrote. Usually, even if I didn’t feel up to it, the words started flowing after I pecked away at the keyboard for a bit. It didn’t hurt that I’m really enjoying writing Any Other Love. Even though I’d like to write much more, much faster, I’m still making progress. I’m making my way to 25K, then 30K, then 40K… all the way to my projected 70K.
I don’t work on weekends, so I don’t usually write then (but sometimes if I’m really fiending, I “sneak” in some writing). Saturdays and Sundays are mine to do with as I please. Netflix and chilling on my couch in the old fashioned sense of the word? Yep. Playing an obscene amount of Stardew Valley? Yes. Spending time with friends and family? Oh yeah.
Those are two more simple rules that I follow, and it works.
I’m still figuring out a plan for the other things—after all, one doesn’t simply buy a house out of thin air—but they feel achievable using these principles.
What kind of person do you want to be? Let me know in the comments!
Chronically Creative: Creativity and Lifestyle Tips for Spoonies
I say all the time that, while I’d definitely rather not be chronically ill, my disease did shove me onto the path of being an author. Before I got sick, I was only dancing around writing; I wrote for myself and sometimes posted things online, while working 10-16 hours a day as a web designer and social media consultant. When I had to leave the workforce, I started writing full-time. I was laid up most of the time anyway; I might as well be productive.
Since then, I’ve discovered lots of tools and tricks to assist me in my career. I’d like to start sharing them weekly, as well as interviews with other creative spoonies and some lifestyle tips. I’ve been wanting to do this for a while, but I’m kind of terrible at keeping schedules and staying consistent—mostly because being chronically ill is a full-time job in and of itself. So these Chronically Creative posts might not be weekly, but if you enjoy them and find them useful, I’ll try my best to do them as often as possible.
This week I’m sharing how I set up my own couch workstation or office.
Disclosure: The links in this post are Amazon affiliate links. I earn a small commission from your purchase, which goes directly to my writing business. Your support is much appreciated!
Since I’m often laid up on my couch with an ice pack, heating pad, or hell, my electric blanket, I’ve been doing most of my writing there. I’ve had to find a balance between being comfortable and creating an ergonomic setup to prevent any further damage to my joints.
I work on a MacBook Pro, with my couch reclined just enough so that my legs and feet are propped up. Behind my head, I tuck a flat throw pillow for support; otherwise I tend to lean forward, especially when I’m super into what I’m writing. I typically wear my wrist braces while using the computer, and often have my TENS machine handy for a nice massage on whichever joints are being assholes that day. Since painkillers tend to make me loopy or sleepy, I try to use other methods of pain management while working, which I’ll share as well.
Please be sure to consult your own doctor to create the best setup for your individual needs.
Over the years I’ve tried many wrist braces, but the only ones I can stand wearing are 3M’s Futuro for Her. I originally found them at Target. Unfortunately, you have to purchase the left and right braces separately—though I do suppose that’s because the average person has arthritis or carpal tunnel in one or the other.
They come in black or pastel blue; mine are somewhere between white and blue because I’ve bleached the hell out of them. My hands tend to get sweaty when I sleep with them on, okay? Not to mention I don’t have washer/dryer hookup in my apartment, so when I’m in a pinch I soak them in a bucket of bleach in my tub.
I can’t recommend these enough. I’ve had them for years and they’re well past due for a retirement and replacement. Previous braces I’ve had were too scratchy or immobilized my fingers too much to type. These keep my wrists straight so that I can continue using my laptop. (Someday I’ll get me a fancy iMac, with its sexy ergonomic keyboard and mouse. Someday!)
I bought my first laptop back in 2006—a clunky Gateway that I was super proud of. I was living with my grandparents and didn’t have a desk at the time, so I often worked on a TV tray in the living room or propped up in my bed. I finally caved and bought a ridiculously flimsy plastic lap desk at Barnes & Noble. It eventually cracked and I replaced it with a laptop desk on wheels that I could use from the couch. I still needed something for when I was bedridden, though, so I finally broke down and got a new lap desk.
It’s so old, I honestly couldn’t tell you what brand it is or where I got it. Probably Target, because I’m a junkie. Mine is like a vinyl, and not really ideal for keeping your laptop cool. When we got my sweet Biz Noni a laptop, my sister and I bought her a lap desk with a wooden surface. I’m not sure of the brand either, but this one is pretty close, as well as comparable in price.
Between my wrist braces and lap desk, I’ve got the perfect (mostly) ergonomic setup right in my living room. The lap desk can be tucked away behind my accent table, and my laptop can be put away in my office. (Eventually I’ll do a post on my office setup—but first I need to get in there and reorganize, because it’s become a disaster area again since I started working on the couch.)
Ideally, I’d have an iMac on an actual desk, with a nice comfy chair. But this setup works for me for now, and that’s what’s important. Like I said, I also tuck a pillow behind my head to keep from straining my neck and shoulders. Sometimes I take my laptop, desk chair, and Ergobeads wrist rest and work from the kitchen table.
They also make a cushion for your mouse, but I don’t have mine anymore since I haven’t use a mouse in ages. I absolutely love my Ergobeads and highly recommend them, as they’re supportive even if you don’t have wrist braces and are working from a laptop or even using a regular keyboard.
In case you’re curious, this is my office chair.
I originally purchased mine last year from Walmart, which got it from Overstock. It appears to be only available through third-party retailers now. It’s not quite as shaped to my back as I’d hoped, but it’s still pretty comfortable—especially considering it was about $140, which is cheap for an office chair IMHO. I got it to go with the desk my aunt gave me, but unfortunately the seat is too wide, so I usually use it with my writer’s desk hutch thing. Brain fog is hiding the actual name for both desks right now, so I’ll try to update this when it comes to me.
I’m going to keep this section short and sweet, as this post has gone well over 1,000 words and I’d originally planned on it being much shorter.
Because I get a limited supply of Tramadol (not to mention it tends to be binding on the GI system), I try to use non-narcotic pain management during the day. Never mind that Tramadol can make me woozy like I’ve had a glass of wine, and some of the stronger painkillers make me outright loopy or sleepy.
My joint pain is migratory, so it’s important that I have a medicine that can target all of it at once or different tools that I can use in different areas. Hands down, my favorite is my TENS machine. I got mine a couple years ago at the suggestion of my friend Melanie, and it’s been a lifesaver. It’s so small and discreet, I’ve even taken it with me to doctors’ appointments, while running errands, and on trips.
I also have a heating pad that can be used for moist heat, too, using a special insert. I learned to appreciate TENS machines and moist heat packs during physical therapy. While PT didn’t help my hip, those sessions at the end were heavenly.
The cover is removable and washable, and the pad itself is super flexible. I’ve tied it around my waist to use on my lower back, and my leg and waist to use on my hip.
When multiple joints hurt and I’m not going anywhere that I will mind the spicy scent, I use Tiger Balm. My rheumatologist was actually quite pleased to hear that it’s sold here in the States and that I use it frequently.
I prefer the clear balm, because it doesn’t stain and it’s just as potent as the red. It does have a strong scent, though, so I’m not a huge fan of wearing it while out and about.
Last but not least, my longtime go-to for discreet and long lasting pain management are ThermaCare patches and heatwraps. Unfortunately, they stopped making the wrist ones, though I can sometimes find the CVS version. I live by the multi-purpose patches, which work perfectly for my hips.
I like these because the heat doesn’t stop if I have to get up or run out. Though I usually wear them to bed, they’re just as handy during my workday.
Did you find my tips useful? Please let me know! I hope you enjoyed this post. Let me know in the comments if you have requests for future Chronically Creative posts.
I’ve been taking Plaquenil and Prednisone for my UCTD for over four months now. For a little while, I was having some moderate anxiety: fatigue, feeling frozen, heaviness in my legs. I thought it might be Plaquenil (or even Tramadol withdrawal), but I haven’t had any of those symptoms in a while and I’m still taking Plaquenil (with Tramadol as needed). I think I might’ve freaked myself out about it, too, and it sort of became this brutal cycle. But my anxiety is relatively tame and my meds are working—all good things.
The temperatures and barometric pressure have been all over the place lately, as usual in New England. It snowed in March and we’ve been getting rain this month, along with random hot days. This has been killing me, but the difference now is—thanks to Plaquenil and Prednisone—I just take some Advil and Tramadol, and it’s enough. Usually, anyway.
Sometimes it’s not.
I’ve been having lots of trouble with my wrists and hands lately. For the past decade, I’ve struggled with severe pain in all of the joints in my hands, but this is a different ball game entirely. For quite some time now, I’ve been getting numbness in my ring and little fingers (which I’ve been ignoring, haha). In the past few weeks, though, it’s progressed to burning, tingling, and icy-weird-ness in both of my wrists and all throughout my hands. It sounds like carpal tunnel, which could easily be caused by the inflammation in my tendons.
I kinda always knew this would happen, eventually. I mean, I am an author, and before that I was a web designer. There are few hours of the day that I’m not hacking away at the keyboard. I guess I just thought I was years away from having to worry about it. Then again, the possibility was mentioned to me a decade ago, so I guess it would’ve been years away then. 😂
The only thing that really seems to help are my wrist braces, which I usually try to wear while using the computer for long periods of time. For the longest time, I was sleeping in them and that seemed to help, but I’d stopped because my wrists weren’t hurting anymore. Now I’m back to wearing them again, and I’m even bringing them everywhere with me because I need them almost all the time. It’s not a big deal, per se, but it’s kind of odd—to me, anyway—how quickly this has progressed. I had the numbness for like a year or so and then bam! Tingling and burning.
I’ve been meaning to ask my rheumatologist, but my appointment keeps getting bumped back for one reason or another. I see him this week, though, so we’ll see what he says.
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Aside from weather-related flareups and possible CTS, I’m doing okay. I’ve been super tired lately, so I’m wondering if my B12, D, or iron levels are low again—spoiler alert: they usually are—but even that’s manageable with cat naps, afternoon teas, and my old fallback Emergen-C.
I’m looking forward to the weeks ahead as the weather continues to warm and I’m able to get out and do more. Last week I went to the zoo with Sandy and the kids; a few weeks before that, on a random nice winter day, I walked a mile.
It’s super important to me that people with chronic illnesses have our voices heard, that we aren’t erased or romanticized. Seeing my words in the media—having my voice heard on this level—is surreal in a way that I can’t even explain. It’s also made me stop and think about a couple things.
I never knew I’d be an activist. Sure, I’ve always been passionate. (Just ask my parents and partner.) I’ve also long been shy and, for quite a while, lost my voice. It wasn’t until more recently that I’ve begun speaking out. I want awareness for people with chronic illnesses. I want able-bodied people to treat us better, to stop judging us by how we look or don’t look. I want better accessibility. (Yesterday I went to a restaurant and their ladies’ restroom barely fit me, never mind a wheelchair.) I want so very many things… and so I think I have to sit down and come up with some goals, focus my efforts a bit more than just sharing my story and speaking out when I come across something wrong. I want to do more.
It’s also made me stop and think about how much my words matter. As a writer, I think I’m maybe a bit more aware of the weight of my words. Seeing them in the media puts it into a whole different perspective, though. I’ve always strived to be myself on social media; I’m going to swear and share cat pics, but I’m also not going to join the mob with pitchforks when there’s a tweetstorm. I want to be professional but firm, serious but kind.
It’s truly surreal to see your words out in the wild, to know that they were on how many thousands of TV screens in an instant. My life hasn’t changed—I didn’t get an influx of followers or anything like that—but in 140 characters, I helped people see how that Cosmopolitan article was focusing on the wrong inspirational story. I’ve been part of the conversation for years, but I feel like this week, I was truly heard—along with so many others in the community.
Hey, I wonder if maybe now Washington Post will accept my article about opioids being a lifesaver for people with chronic pain. 😉