chronic illness

Why I Love the Ukulele

Kate Sloan

Ukulele, small and fierceful
Ukulele, brave and peaceful
You can play the ukulele too –
It is painfully simple
-Amanda Palmer, “Ukulele Anthem“

I’ve been writing songs since before I knew how to play any instruments; it’s baked into me how yeast is baked into bread. But instruments are a big part of how you bring music into the world, and convey to listeners the way you’re hearing your songs inside your head, and so I always wanted to learn to play an instrument, long before I ever did.

A year or more into piano lessons (which I enjoyed, though I begrudged having to practice my Bach and Chopin), I started listening obsessively to indie folk artists on a website called PureVolume (it was sort of like the MySpace of the music industry at the time) and, in particular, found myself drawn to songs written on acoustic guitars. I had an old violin, inherited from a relative and missing a string, and I would sit in front of the family computer plucking out simple chords on this creaky old instrument and sing over them into a USB microphone. Once, my dad walked by while I was doing this, and he remarked aloud, “We gotta get this girl a guitar.”

Playing my first guitar, circa 2008

He did, and it’s still one of the most meaningful acts of love I can recall in my life. He took me to Long & McQuade, arguably the best music shop in Toronto, and I told the salesman I wanted an acoustic guitar. (Electric guitars weren’t really on my radar; the artists I cared about then were all writing on acoustics.) The salesman asked me if I wanted a steel-stringed guitar or a nylon-stringed one, and I didn’t know, so he grabbed one of each. “Nylon-stringed guitars are usually used for classical music,” he explained, playing a bit of fingerpicked flamenco on the one he’d chosen, “whereas steel-stringed guitars are used in folk music.” He played a few bars of music that sounded like folk-rock to me – like the music I’d been listening to on PureVolume – and I said, “That one, please.” My fate was sealed.

I loved my guitar, and took lessons for a few years from a chill-as-hell Irish hipster named Eoghan (pronounced like “Owen”) who was getting a degree in jazz guitar. One December, my mom sent along a box of cookies for me to give him as a Christmas gift, and he was so surprised and flustered by this that he gave me a huge book of jazz standards he happened to have in his guitar case that day. I treasured that book, and still have it.

No matter how many guitar lessons I took, though, it just never felt as natural to me as singing or playing the piano. My fingers weren’t strong enough to play barre chords, or nimble enough to swap quickly between different chords. True, I could have (and should have) practiced more than I did, but it felt like I was hitting an insurmountable wall, limited by my level of physical ability.

My guitar teacher worked out of a music school on top of a music store, and so I would walk through their rows of instruments every time I went to a lesson. And sometime around age 16, I began to notice the ukuleles hanging adorably in a back corner. One fateful day in 2008, I took a couple friends with me to the shop and picked out a bright green Beaver Creek ukulele, paid approximately $40 for it, and walked out holding my musical future in my hands.

It was just so clear to me, so quickly, that I was meant to play the ukulele. I fell in love with it the way I fall in love with human beings: quickly, obsessively, and all-consumingly.

See what happens when you muzzle a person’s creativity
And do not let them sing and scream
And nowadays, it’s worse, ’cause kids have automatic handguns
It takes about an hour to teach someone to play the ukulele
About the same to teach someone to build a standard pipe bomb
You do the math!
-Amanda Palmer, “Ukulele Anthem“

If you’re not familiar, the ukulele differs from the guitar in a few key ways. It’s smaller, and tuned higher; it’s cheaper, and has a thinner but more playful sound. And, crucially, it has only four strings instead of six, so chord shapes are simpler, requiring less nimbleness and coordination of the player’s fingers. Its strings tend to be made of nylon or similar materials, so it doesn’t require as much strength as pressing down on steel guitar strings, which can bite into your fingertips like knives if you haven’t formed callouses there yet.

I wasn’t diagnosed with fibromyalgia yet at that time, and who knows when I actually developed that illness – but the struggles which led me to prefer ukulele over guitar have only deepened over the years, in large part due to my fibro. My hands are weaker than I’d prefer, and often sore. I’m clumsy and prone to dropping things, stumbling, hitting wrong notes on the fretboard. I’m frequently frustrated by an inability to translate the songs I hear in my head into an audible, tangible result that I can share with others. The ukulele, therefore, is perfect for me.

With the barrier of insufficient hand strength removed from the equation, I’ve gotten much better at ukulele than I ever got at guitar, even though I took guitar lessons for years and am mostly self-taught on the ukulele. I can play complicated chord changes from jazz or musical theatre, and never (okay, almost never) get so frustrated that I want to throw my instrument across the room. I can strum chords or finger-pick, write songs or learn other people’s songs. It feels easy and natural to me in a way that guitar never did.

There’s a term I love, “access intimacy,” which I learned from some kink workshop at a conference long ago. (I can’t recall who introduced me to this concept, or I would credit them.) It refers to the intimacy you can have with people who recognize and meet your access needs – whether those needs are related to physical disabilities, such as requiring ramps and access to handicapped bathrooms, or mental-emotional issues, such as needing to avoid certain PTSD triggers or needing a slow approach to task-switching due to ADHD.

I genuinely feel that I have “access intimacy” with the ukulele. It meets me where I’m at. It enables me to make music, write music, and feel like I’m a part of the music-making community, even though virtuosic guitar-playing is beyond my grasp.

The cheapness and accessibility of ukuleles is also highly democratizing. As singer-songwriter Amanda Palmer points out in her “Ukulele Anthem,” beginner ukuleles are usually pretty affordable (you can find ’em for $20-50, although I’d recommend spending at least $40 if you want a decent-sounding uke), and the chords are simple enough that you can pick up many of them in just an hour or two of practicing, especially if you have some music knowledge under your belt already. I love knowing that even if I suddenly needed to spend a lot of time away from home – as Amanda Palmer did when she got stuck in New Zealand toward the beginning of the pandemic – I could walk to a local music shop and be reunited with my favorite instrument for less money than a meal at a mid-tier restaurant. It makes me feel safe and secure, knowing I can take my music with me anywhere I go. One of the deepest and truest ways I know my spouse really loves me is that they keep a ukulele in the corner of their living room, even though they don’t play any instruments, simply because they know I’m calmer and happier when there’s a ukulele nearby that I can pick up whenever the whim strikes.

Nowadays, even as I’m mired in seasonal depression and fibro pain and general 21st-century millennial malaise, I keep a soprano ukulele on my bed so it’s always there when I feel like reaching for it. Not next to my bed, not near my bed, but on my bed. It’s small enough that I can do that. And many days, having it there is the difference between feeling sad and listless, and playing songs until I find my smile again.

I’ve taught ukulele lessons, I’ve bought ukuleles for friends, I’ve evangelized about ukuleles to all who would listen – and the reason for all this is simple. The ukulele has changed my life, made it brighter and bolder and easier and more fun. It has made music feel delightful instead of soul-sucking and painful. Every time I hold this little instrument in my arms, I feel grateful to be able to pluck its four strings.

So play your favorite Beatles’ song
And make the subway fall in love
They’re only $19.95; that isn’t lots of money
Play until the sun comes up
And play until your fingers suffer
Play LCD Soundsystem songs on your ukulele
Quit the bitching on your blog
And stop pretending art is hard
Just limit yourself to three chords
And do not practice daily
You’ll minimize some stranger’s sadness
With a piece of wood and plastic
Holy fuck, it’s so fantastic, playing ukulele!
-Amanda Palmer, “Ukulele Anthem“

Traveling While Chronically Ill: My Must-Haves

Kate Sloan
gotta love those flattering airport portraits

Later this week I have to get on a plane for the first time in a while, and I’m dreading it. Of course, I’m thrilled to be able to go see my spouse, especially since it’ll have been over a month since I last saw them – but the travel itself? Not my fave.

Travel tends to be hell on my chronically ill body, for so many reasons: the stress, the rushing, the cold air, the cramped seats, the waiting around, the social anxiety, the lugging of luggage… Usually by the end of a travel day I am a husk of myself, like I’ve been body-snatched by a sullen alien. Not fun!

However, in all the travel I’ve done as part of this long-distance relationship, I’ve learned how to mitigate my symptoms as best as I can, before, during, and after traveling. Here’s what works for me, incase it helps any of you too…

 

Routine

Routine is the most important thing for me in my travels. Without a routine, I fall to pieces.

My current travel routine involves making a packing list about a week in advance, packing my suitcase over the course of 1-2 days before I leave (spacing it out as needed due to fatigue and pain), checking into my flight online in advance so I don’t have to do it at the airport, and getting to the airport at least 2.5 hours before my flight takes off. If it’s possible to pre-select a seat, I choose one by the window so I don’t have to get up/move around at all once the flight takes off, and can rest/nap if I need to. (I always have my eye mask with me to block out light incase I need a quick snooze, or am just feeling overwhelmed and need to exist only inside my own head for a while.)

Part of my routine is knowing exactly where I have to go and what I have to do: my terminal, gate, flight number, seat number, etc. I’ll stash my passport and boarding pass in an outer pocket of my carry-on bag so I always know where they are and can access them quickly. Basically my goal is to pre-emptively eliminate as much stress and uncertainty as I possibly can.

 

Outfit

My go-to travel outfit is as follows:

  • A simple modal slip dress, possibly with an Aerie bralette underneath
  • Black cotton leggings
  • A cardigan over top (cotton in the summer, cashmere in the winter)
  • Cozy socks
  • Black leather boots

Traveling is such an ordeal that I always want to be as comfortable as possible, all day long. If that means having to wear a literal nightgown onto the plane (albeit dressed up with various other elements to make it look more presentable), so be it! I also hate feeling stressed and rushed in the TSA line, so I engineer my travel outfits to be easy to disassemble and reassemble as needed.

Planes are usually pretty cold, regardless of what the temperature is outside, and cold is one of my big pain triggers, so I never regret having a cardigan with me. If it’s super hot out, I might keep the cardigan in my bag until I get onto the plane, but I always bring one.

 

Luggage

Luggage cubes are transformative! They are little zippered cases that you can use to organize what you pack. I’ve found them crucial for longer stays, when I don’t want to have to rip my entire suitcase apart to find a fresh pair of underwear or a new shirt. Usually I’ll keep underwear and socks in one, T-shirts in another, and dresses in another. Not only does this make my stuff easier to find; it also helps with compressing my clothes so they take up less space and I can fit more things in my suitcase.

I used to be the type of person who could pack a small carry-on and be fine, but these days I tend to take longer trips and also just don’t have the strength to lug a suitcase around the airport with me anymore, so I always check it instead. It’s pricey – usually $50 for one bag or $80 for two – but I view it as a “disability tax” I just have to pay because my body physically cannot manage as much as an able-bodied person’s can.

Having to wait around at the baggage carousel after my flight is sometimes annoying, especially since at that point I’m usually so mentally and physically exhausted that having to wait a few extra minutes feels like an affront to my sanity, but I just try to calm myself down by playing games on my phone until the bags come out.

 

Carry-On

My go-to carry-on bag is a black leather Holiday Lane Page tote by Kate Spade. Previously it was a big turquoise leather tote by Coach. My carry-on needs to be comfortable to carry and able to hold all my stuff. It also needs to have a proper zip closure so it doesn’t spill everywhere when I stash it under the airplane seat in front of me. I use the hell out of these bags so I usually have to replace mine every 2-3 years or so (the handles inevitably start to wear through and the bag starts to lose its shape from overuse).

I usually buy some snacks (ideally granola bars or protein bars) at an airport shop once I’ve gone through security and stash them in my bag. Travel sometimes makes me feel a bit faint from all the overexertion and anxiety, and slightly sugary snacks can help. Also always a good idea to grab some gum to chew during takeoff and landing to help with ear-popping. And I always buy some water, because plane air is incredibly drying and dehydration can exacerbate anxiety and pain.

I try to bring distractions that I find joyful and uplifting, since air travel is so… not. Usually I’ll bring my Kindle stocked with good books, my iPad with some games downloaded and some Instapaper articles queued up, my phone and headphones for listening to podcasts or music, and my Nintendo Switch or 3DS for gaming. Sometimes I’ll also journal on the plane, so I gotta have my Moleskine notebook and a pen that won’t explode in the air.

 

Meds

Air travel is so exhausting, stressful, and demanding for me that I always end up experiencing a lot of body pain during and after travel, so sometimes I’ll pre-empt it by taking a painkiller (naproxen) before leaving for the airport or getting onto the plane. It takes the edge off, at least. I’ll also make sure to take my iron supplement on a travel day because otherwise I run the risk of feeling anaemic and maybe even fainting.

My doctor prescribed me an anxiety medication, Ativan, which I only ever use in emergencies because it’s habit-forming. Usually I keep some in my bag when I travel, because I know from experience that delays, cancellations, last-minute schedule changes, and other stressors can trigger an anxiety attack for me pretty easily, especially since I’ve had so many anxious experiences in airports that my body has a somewhat Pavlovian reaction to them now.

If I’m really freaked out, sometimes I’ll take a weed edible before leaving for the airport, but I wouldn’t recommend this unless 1) you know the route of your journey very well and don’t anticipate it’ll change much AND 2) you have lots of experience with this particular intoxicant and can therefore behave yourself even if you get a little loopy. (It would not be fun to be kicked off a plane for belligerent behavior à la Kristen Wiig in Bridesmaids.)

 

Arrival

These days I will almost always order an Uber to take me from the airport to wherever I’m staying, if it’s at all financially feasible. The stress of trying to find my way to a subway station or shuttle bus after the ordeal of travel is just too much for my body and brain. I’ve learned from all my experiences that immediately post-flight is a time when I’m highly likely to feel weirdly depressed out of nowhere, due to sheer exhaustion, and that’s a state in which I often feel unable to figure out public transport, especially if I’m worried I might start crying in public (it happens!).

Once I get to my destination, I need to relax. My spouse knows never to plan anything heavy-duty for the night of my arrival. Usually we’ll go out for dinner at a low-key local place. Sometimes I’ll take a hot bath with Epsom salts to de-stress my muscles. Sometimes my spouse gives me a massage, or just holds me close and says things like “You’re safe” and “You did a good job today” and “All the hard stuff is done,” to let my nervous system know that it can finally relax. I get to bed early and usually feel much better in the morning.

 

Fellow chronically ill people, what helps you when you have to travel?

How I Track & Manage My Chronic Illness Symptoms in a Bullet Journal

Kate Sloan

I’ve long admired bullet journaling as a practice – like the art journaling and planner collage I did as a teen, it’s a way of making the everyday into something visually appealing and memorable. Life itself feels more beautiful, I find, when you document it in a beautiful way.

I was recently hit by a deep and recurring urge to return to this style of creative documentation. But, in particular, I’d been wanting to find a more concrete way of tracking my chronic illness symptoms. In seeking a diagnosis (which I’d been doing for over six years with no luck thus far), it can be helpful to have cold hard numbers to show to a doctor, so they can get a sense of how serious and ongoing the problem is. I’d experimented with symptom-tracking apps, spreadsheets, and digital notes, but had found it difficult to use these consistently enough to gather any real data. It was time for a physical solution.

While I no longer do much writing with an actual pen on actual paper, I’ve known for a long time that it can help unlock things in the mind that would’ve remained unexplored if you’d stayed in a digital medium. There are numerous scientists who have opinions on why this is; there are also cultural commentators, like Tom Hanks and John Mayer in the documentary California Typewriter, with their own views on why physically scrawling or hammering out a piece of writing can feel better and produce better results than digital alternatives. I doubt this is true for everyone, but it’s certainly true for me. All attempts I’ve made to journal on a computer, for example, left me feeling unable to dive as deep emotionally as I tend to when I let my thoughts meander through a notebook on my lap.

So I figured a similar principle might apply for tracking my various symptoms, remedies, ups and downs. I bought a bright yellow Leuchtturm1917 dotted journal (widely considered the best choice for bullet journaling aficionados) and some colored pens and highlighters, and got to work building my setup.

I should say upfront, what I’m doing is a very loose interpretation of what “bullet journaling” actually means. I’ve also pulled a number of ideas from various sources I found through Pinterest. Let’s talk about 3 of the main tools I use in my journal to help track and assuage my chronic illness symptoms:

Habit tracker on weekly spread

Lots of people do a “weekly spread” in their bullet journals, where they lay out the days of the week like a traditional planner, and write their commitments and appointments on the corresponding days. I got inspired by some of the journalers I saw online who were doing habit trackers as part of their weekly spread, so I decided to start doing my own.

Basically this is just a table with a list of habits I want to instill on the Y axis and the days of the week on the X axis. When I successfully do one of the things on my habit list, I fill in the square for that habit on that day. Pretty simple.

However, I continue to find it astonishing how motivating this practice is for me. The satisfaction of coloring in a part of the table and seeing the page get gradually more colorful… The ability to see, at a glance, whether I was good or less good at self-care during a particular week… The ability to triumphantly text my partner a photo of the days when I complete all of my habits… It’s all lovely.

I love that I can change up which habits I’m prioritizing from week to week; for example, if I’m having an active psoriasis flare-up, I’ll add “apply psoriasis lotion” to my habits list. The habits on my current page are: sunshine (get outside/feel the sun on my face), exercise, supplements, reading (at least 20+ minutes; must be a book, not an article or blog post), brush & floss, and intentional joy. That last one is the vaguest, but basically I’d define it as taking some time out of my day to deliberately experience something that makes me happy, whether that’s laughing my ass off at a Netflix comedy special, having a decadent jerk-off session in the afternoon, or cuddling my roommate’s cats while telling them how pretty they are.

I’ve genuinely gotten much better about sticking to these habits since I started tracking them in a journal. Would recommend!

Monthly health notes page

At the start of every month, I divide one page into 3 columns – pain, brain, and miscellaneous – and number the days of the month on the left side of the page. Then I make notes throughout the month about which symptoms I noticed and when.

This is fantastically useful for so many reasons. It gives me a record that a doctor might find useful. It gives me a clearer picture of how my menstrual cycle affects my symptoms. I can cross-reference this page with my habit tracker to see how various habits affect the way I feel.

In fact, I recently did exactly that, when I started having scary heart palpitations a couple days a week or so. I looked at my health notes and my habit tracker and discovered that the days my heart went haywire were all days that I had ingested both caffeine and a red panax ginseng supplement I’d recently started on. I did some research and found out that ginseng is known to increase heart rate for some folks – and of course, so is caffeine. I also found out through research that the antidepressant I’m on, Wellbutrin, increases some users’ sensitivity to caffeine. With all of this information available to me, I was able to make the decision to stop taking the ginseng supplement and limit my caffeine intake going forward. My heart palpitations haven’t returned since I did that.

I also like that the health tracker page gives me a place to brain-dump any random symptoms I might be experiencing that my hypochondriac brain thinks might be perilous. Looking back on this page helps me see that most of the stuff I was worried about turned out to be nothing (or, sometimes, turned out to be anxiety-related).

Self-care bingo

I read about this in a bullet journaling blog post and loved the idea immediately. Self-care is definitely an area where I need as much help as I can get, being a depressed and anxious workaholic prone to destructively high expectations for myself. I liked the thought of “gamifying” my self-care to make me more motivated to actually do it.

At the start of each month, I draw out a 6×6 bingo board and fill in each square with something specific that I want to do to reduce my stress level and increase my joy quotient. Some of the things repeat from month to month because they work consistently for me – like “take a bath” or “no social media for 3 hours” – while some get changed up.

This spread gives me permission to be nice to myself; self-care feels “productive” because I know I get to fill in a little square on my bingo board after I do it. As a person who has often beat herself up for reading or playing video games because those activities “weren’t productive,” I know that I struggle to do things just for the pleasure of doing them; there’s almost always some guilt and/or shame attached to that for me. I’m working on it in therapy (among other things), but until I figure out a better way to deal with that problem, this self-care bingo thing seems like a great stopgap.

 

Have you ever used a bullet journal to track or mitigate your chronic illness symptoms?

Building a Chronic Illness Wardrobe

Kate Sloan

Weirdly, one of the saddest parts of my slow descent into chronic pain hell is being unable to dress the way I used to. 💔

Even setting aside the issue of how my body shape/size has changed since becoming less mobile (because I ain’t about that fat-shaming life), there are some types of clothes I just can’t wear anymore, or at least not very often. My beloved rockabilly dresses have nipped waists that dig into me uncomfortably; luxury lingerie stabs me with its underwires and lace; even jeans often feel painfully restrictive. I was never much of a high heels person, but now even sturdy heeled boots sometimes hurt me. It suuuuucks.

However, slowly but surely, I’ve been re-learning how to dress myself in what feels like a completely different body than I had in my teens or early twenties. Here are some of my top picks; maybe they’ll help you if you also have chronic pain/illness, or even if you just like comfy clothes!

 

Leggings and lounge pants have become foundational to my style. I used to wear tights under dresses most days, but over the years I’ve slowly transitioned to wearing leggings under my dresses instead, because they’re comfier, more durable, easier to put on in a hurry, and can double as pants for sleeping in or lounging around the house. (Or wearing out, frankly. The “leggings are not pants” brigade can fuck right the hell off.)

These TrueSleep modal joggers by the Gap are some of my faves right now; I have a few different pairs. Modal is one of the comfiest materials for my particular body. It’s stretchy, non-scratchy, and feels light as air against my skin. These pants have pockets – always a plus – and they have a slim enough cut that they can pass for leggings if I throw a dress over them before leaving the house. They’re marginally see-through because the fabric is so thin, which is admittedly a drawback, but I barely wear them out of my apartment so it doesn’t really matter. I also love my Ureshii leisure pants, which were made-to-measure and are soooo comfy and soft.

 

Cute tops help me feel like a human even when my body isn’t cooperating. I’ve recently sought out soft lace-edged tank tops as a replacement for the oversized T-shirts I tend to rock with my lounge pants, because any little thing I can do to feel more femme is helpful when I’m achy and insecure.

Looking in the sleepwear section of any clothing store is always a good bet for pain-friendly clothes, because those garments tend to be specifically engineered for comfort and mobility. I always keep an eye out for “sleepwear” items that don’t look like pajamas; they are truly the holy grail.

 

Modal slips are a lifesaver for me. My first one was a black satin-edged Calvin Klein one that I bought a decade ago, and it’s held up so well and gotten me through so many pained days that I recently ordered a couple more: a short one in black and a longer one in a rosy red. These are way more glamorous than sweatpants but just as comfy (if not moreso), and can even be worn out of the house if layered appropriately with leggings and a cardigan or somesuch.

I’m curious about silk slips – they seem like a summertime equivalent of my modal ones, and are ultra-glam – but the one I want most isn’t available in my size, so I’ll keep looking, I guess! I also dream of someday ordering a bespoke Ureshii jersey dress; their cuts are gorgeously flattering but they’re made of super-soft fabric.

 

Bralettes are a must-have for times when I want some boob support but am in too much pain for a proper bra. Truth be told, I don’t wear bras or bralettes all that often, because I’ve basically stopped caring about my nipples being visible or whatever, but sometimes I want to feel a little fancy so I’ll put one on.

Some of the comfiest ones I’ve found are by Aerie. I usually avoid lace because I can’t handle the itchiness against my skin; soft fabrics are where it’s at. If I ever want to go the whole nine yards, I could order some made-to-measure jersey bralettes from Ureshii (drooool).

 

Cashmere sweaters are super comforting and cozy. They especially help me when cold weather is causing pain flare-ups; one day I’d love to own a pair of cashmere leggings for similar reasons (feel free to recommend some in the comments!). My favorites right now are by J. Crew but it’s pretty easy to find vintage cashmere for a steal on eBay, Etsy, Depop, etc.

Cashmere also layers really nicely with materials like modal and silk. The extreme softness of it makes me feel swaddled in safety. Truly ideal.

 

Ugg boots are a controversial pick, but whatever. They’re incredibly comfy, even when I’m having one of those weird pain days where just walking around hurts my feet and legs. I often even wear mine around the house.

The ones I have are adorned in sequins, but I’d eventually like to get a classic black pair because they’re subdued enough that they don’t scream “Paris Hilton in 2003.” (Not that there’s anything wrong with Paris Hilton… but she and I have different aesthetics!)

 

Jumpsuits and rompers are best for those days when I just can’t be bothered with separates. My favorites are by MeUndies, whose rompers are so sinfully soft that they’re even comfier than being naked (for my body, anyway). And they have pockets. Incredible.

The Gap makes a Softspun V-neck jumpsuit and a modal romper that both intrigue me. In summer I could wear these out of the house and probably no one would bat an eye. Cool!

 

Fellow folks with chronic illness/pain, what changes or additions have you made to your wardrobe to accommodate your condition?

On Being a Chronically Ill Writer

Kate Sloan

My daily routine is more affected by my chronic illness than I’d like to admit. Work can’t start until I manage to forge a path through my fatigue with the requisite amount of coffee and good music; task-switching and location-switching are informed by which positions my body can tolerate that day and which it refuses to; and when my pain decides that the work day has ended, I usually have to listen.

It’s – to say the least – a bummer, especially since I used to be renowned among my friend group and my online communities for my productivity as a writer. The same impulses still come up as before, the ones that pushed me toward creativity and stamina and long sore-eyed hours in front of the computer, but my body cannot enact my mind’s wishes on most days now and it makes me feel like a failure. Like I’m failing not only myself but also all the people who taught me how to write and all the people who believe (or believed) in me as a writer.

I seem to come back to Esmé Wang’s blog The Unexpected Shape over and over again as I wade deeper into the chronic illness life. Esmé is one of my favorite writers, and – like me – she deals with pain and fatigue (among numerous other symptoms) as part of her daily life. She’s written a lot about “creating a healthy writing practice when your health doesn’t want to cooperate,” and I’ve found her suggestions helpful, so here are some of mine, incase they can help anybody else.

I keep a to-do list almost every day, which boils down my most pressing tasks to an easily digestible form. The desire to tick those boxes and complete the list is sometimes stronger than the downward gravitational pull of my body’s limitations. When there’s only one more thing left to do on the list, usually that fact alone is enough to get me to roll up my sleeves and work on it – even if, by that point, I have to go very slowly and take many breaks.

I have a padded lap desk that I use when I’m in bed, to hold my laptop steady and keep it from overheating on the duvet, or burning my skin (temperature sensitivity is sometimes a symptom of mine). However, depending on where my pain is manifesting on any particular day, it may not always be possible to comfortably work in bed – so I move around, from the bed to the couch to the desk to the chair, looking for a few minutes of relief in which I can type a few hundred words or answer a few emails.

On days when my body is rebelling so much that even sitting at my computer feels exhausting and unfeasible, I’ll use the Notes app on my phone, which syncs to my other devices so I can easily copy and paste the text to where it needs to go later when I’m able to. I haven’t needed dictation software as of yet – the way I write and edit is exacting and particular in such a way that I get frustrated at the very thought of not being able to see what I’m writing as I write it – but am keeping it in mind for if/when my level of debilitation progresses enough to make it necessary. On especially bad days, sometimes I’ll write in longhand (I like Blackwing pencils and Moleskine notebooks; they make this process feel glamorous and easy) and then type up the words when I can.

I rely a lot on pre-scheduling. This was always true, due to the way the hypomanic episodes of my early 20s made me want to write, write, write on certain days while depression kept me uselessly crying in bed on other days. Now, I’m more aware than ever that any day – or even hour – when I feel capable of working is worth taking advantage of, if I can. Doesn’t matter if a blog post won’t be published until Thursday; one motivated and limber-fingered hour on Tuesday might be the right time to get it done. I try, as much as I can, not to leave writing tasks until the last minute before the deadline, because I can’t control what my body will be doing at that time.

I take naps as needed, which I’m fortunate to usually be able to do, due to my freelancer lifestyle. A good eye mask is a must-have for mid-day naps. My body pillow helps keep me comfortable while I’m resting. I use the Clock app on my phone to set timers/alarms so I don’t nap the whole day away.

I have a cheap microwaveable heating pad with Velcro straps that can be positioned on sore body parts as needed. I want to amass a collection of these so I don’t have to choose between treating multiple sore body parts on especially bad pain days.

Comfortable clothing is crucial, especially since my fibromyalgia-esque chronic illness sometimes causes flare-ups of hypersensitivity to scratchy or restrictive garments. I like extra-soft tri-blend T-shirts, MeUndies modal underwear and lounge pants, and (when I’m feeling a bit fancier) modal slip dresses and vintage silk robes. I particularly like loungewear that can be re-styled in an outdoors-appropriate way incase I need to dash out for a coffee or some groceries.

I’ve started using a pain tracking app to keep records of my pain’s intensity, locations, triggers, and treatments. I like this one because it’s super customizable; I can, for example, add “orgasms” as an option in the treatments category, or track my anxiety levels alongside my pain levels to see if they match up, or input impending menstruation as a potential trigger.

I’ll sometimes take a mid-day bath when my pain is especially bad, because I find the hot water gives me some relief for a while. Epsom salts are supposedly good for pain relief because of their magnesium content. Some people write in the bath; I haven’t yet figured out a way to do this that feels safe and sustainable for me, since I don’t want to get electronics close to the water and I worry about dropping my notebook into the tub. Maybe one of those wooden bathtub trays is in my future. For now, if I need to continue working while in the bath, I usually use it as reading/research time – my Kindle Oasis is waterproof and I can load it up with PDFs of my choosing, like scientific studies I intend to cite in an article or books I’m assigned to review.

Finally, one of my greatest tools in the fight against pain is cannabis – which, fortunately, is legal where I live. (By the way, why the fuck hasn’t Canada pardoned and freed everyone who is incarcerated on cannabis-related grounds? It’s bullshit with hugely racist motivations and manifestations. Anyway…) Usually weed makes me too spacey/giggly to work properly, so I mostly leave it until the end of the day when all my work is done, but sometimes my pain is bad enough that I need to treat it in order to focus on any task. In that case I’ll try to pick a strain high in CBD and low in THC, use it sparingly, and schedule my day so that I’m doing highly methodical or highly creative tasks while high – never anything requiring a lot of logical analysis or careful phrasing.

That’s what’s working for me right now. I’d love to hear from other chronically ill writers in the comments (or in your own blog posts, if you prefer – send me a link please!) about how they manage their symptoms and get their work done.

 

Additional resources I’ve found helpful on this topic: