Some of you may be wondering how I’ve been coping with the stress of my situation. The truth is, this blog has been focused almost entirely on the medical part of my story, and my illness accounts only for a fraction of the sources of stress around me. I’ve been worried about money, my relationships, my future, my independence and new lack thereof, and of having to face the possibility of speaking to certain family members under duress. I am also in constant flux emotionally regarding my condition. I tend to oscillate between assuming that everything that is happening to me is only in my head and assuming that there is something wrong with me that has yet to be “defined” by the medical community, and every possibility in between.
Between all of this uncertainty, I have been all but forced to take every measure possible to take care of myself as best as I can. I suppose some people reading this may be confused by my tone. It’s not that self-care has never occurred to me. Just more that I generally don’t make it a priority. Now, it is a priority, and as uncomfortable as it was at first, I have learned that not only is it okay to put myself first, but I need to right now. I’ve also learned a lot about myself in the process!
My personal “self-care package” looks a bit like this:
Something I can nurture, care for, and watch grow.
As many creative outlets as possible, specifically writing and artistic.
Keeping a very regular journal
Sticking to a dedicated routine: schedule all of the above and don’t forget hygiene rituals
Bedtime ritual
This particular combination of rituals has taken time for me to cultivate, and I know it will continue to shift and grow as my needs change, but this is what works for me now. A typical Sunday (a day in which all of the above described activities would occur) might look like this:
7.30-830AM Wake up. It’s important that I stick to the same bed and wake time as much as I can, for the sake of my quality of sleep. Upon waking up, Greg makes coffee and takes Frankie outside for a walk. I will get myself dressed and ready for the day. For the first few weeks of my paralysis, I let Greg dress and undress me. I’ve found that not only do I not need him to do so, I feel much more confident in myself when I do anything I can for myself.
8.30AM Getting going. I will probably have taken my enormous dose of morning meds and had my first coffee. I will probably have started my first joint of the day. I will also around this time be opening my laptop to get a sense of anything that needs to be addressed or looked at right away. Usually there is not, but it makes me feel better to know this early in the day. Greg will have made breakfast at this point. We have both committed to eating as healthy as possible, for both of our physical and mental wellness. (Lately on the menu for breakfast – sautéed vegetables with a fried egg)
10AM General housekeeping. Checking lists, checking calendars, checking email, setting up tasks and reminders for the week ahead. These may sound like “work” for a Sunday, but they are enormously important for me to get done on a regular basis. The very beginning of the week is obviously an attractive choice
11AM Get outside. Usually this entails getting onto the porch for another joint and some plant therapy!
12-5PM Social connection. Just about every single Sunday I will see a combination of friends. Some of them are in town on Sundays for local events. Some of them just enjoy my apartment and they happen to be available. This time around my friends to talk, laugh, eat, and just unwind is absolutely critical. I am so grateful for the community that has grown around me, in my time of need, for so many reasons – but most importantly I can see relationships growing between friends of mine who didn’t know each other prior to me becoming sick. They may have known of the other just from hearing me talk of them, but they had never met. But now, I am the person bringing wonderful people together, and it’s beautiful. No matter the combination of people who are visiting, Sundays are always so much fun, with no one feeling any pressures of work. We are free to smoke, watch movies, and talk and talk and talk.
5PM Journal, draw, color, work on some other creative project, read. Usually I will spend a few hours at this time of day alternating between these activities. A favorite is to write a journal entry, read a few chapters of a book, and then have some tea and color. Another favorite is to spend several hours reading. I’m almost always reading multiple books at once, and I enjoy starting with my ‘heaviest’ book of the time, and when ready, moving to the next heaviest and so on, until I have an hour to read whatever ‘nostalgia’ read I happen to be going through for the sake of a personal project based in curiosity.
8PM Shower. Remember to condition hair, don’t just let the water run through it. And a little moisturizer wouldn’t kill you. Brush teeth, change into pajamas
9PM Read in bed, take evening medication, check alarms for the morning, and try to get to sleep by 10 pm.
I’ve come to rely on my routines, rituals, and systems. I truly believe that if I were to start slacking on any of these, I would crack. That’s not to say that everyone needs to be as strict as I am (am I? I am so out of touch when it comes to the current snapshot of ‘ideal wellness practices’). I happen to be hovering on a precarious ledge, and one wrong move can easily push me one way or the other. I need to be careful right now. I need to see the disaster coming and do what I can to sidestep it. If I can strengthen myself spiritually and mentally this way, I will absolutely continue to do so. And like I said, I am already starting to feel like I am relying on my rituals.
Feeling the need to nurture has always been a strong one for me by way of pets and plants. Since I cannot care for more pets than I already have, I’ve been overcome with the need to adopt, rescue, and tend to as many houseplants as I can. I already had a decent number of houseplants to begin with. But I’ve become a woman obsessed, and am constantly scouring Facebook, big box stores, and grocery stores for plants that need a little extra love. I often find them free or next to nothing, and I have a pretty solid success rate. I’m learning a ton about plant care and seeing them turn the corner and thrive has been so therapeutic for me. If I can save these babies, maybe I can save myself too.
Creating art has always been fun for me, but I’m not good at it, so I often never bothered to do it. What I’ve learned is that I don’t need to be good at sketching in order to fill a sketchbook. I can, in fact, fill it with doodles, with tons of tries, with drawings done in crayon, drawings done while way too high, or tripping. In fact, I have found that sketching has been a great way to gain control over my fine motor skills in my right hand. I also love to color! Kids’ coloring books, ones geared toward adults, themed ones, simple ones – any will do. I love to experiment with different mediums on the same page: colored pencil, ink, crayon, and watercolor. I’m no artist, and I’m not doing it for any reason other than just to do it. And it’s beautiful and it will forever be a part of my regular rituals.
Writing is arguably even more important to me when it comes to creating art. One of my favorite things is coming up with silly writing prompts in my head, and later when I feel the itch to write something fun, just for fun, I have a list of inspiration to choose from! I’ve been having a blast flexing my writing muscles lately, between the blog, my journal, creative writing, and writing I’ve submitted to magazines and journals for contests and also for fun. Occasionally I will see a post on one of my Facebook groups asking for submissions following a certain prompt, and I will excitedly writing something, and oftentimes not even submit it, because it ended up changing and mutating so much from the original prompt it would no longer even be a valid submission. But boy does it feel good to pick a prompt apart, spit something out, then skin that thing, look at its core, and rewrite it ten more times, until you’re left with the shiny, hard center. It may not be what I set out to create, but I worked with it, I stripped it down, I twisted it and manipulated it until it was 100% mine.
We all know how important it is to keep a regular schedule to manage our time effectively, but keeping to a schedule is only easy to do when school or work creates that schedule for us. Turns out, when you lack a traditional job or schooling, you need to manage your own time. As someone with Major Depressive Disorder, I am extremely prone to feeling depressed when I do not feel productive. It’s a viscous cycle. The less productive I feel, the more I want to sleep all day, which makes me feel less productive, and so on. I have finally committed to keeping to just one system (Google calendar, rather than a chaotic mix of Google calendar, notes written in my phone, a paper calendar, an agenda, and the notorious “I’ll remember that appointment”) and also utilize some other organization tools to stay on top of everything.
Similarly, keeping to a routine for my journal, and making the simple change of going from a physical journal with a pen, to a digital one, written in Microsoft Word, and backed up in Google Drive, has been instrumental to me keeping up with the journal for two straight months! This has made it easy to make sure that I am writing at least something every single day. Most days I write many things, but if nothing else, I will write a journal entry. As far as switching from a physical journal/notebook to a Microsoft Word document, I’m sure I lost some of you. Hear me out. I can type much faster than I can write. Especially now, with a tremor in my dominant hand. Also, I tend to lose notebooks, or I end up hiding them and forgetting where they’re hidden. By typing out my entries, I can save them to my hard drive and/or Google Drive. They are totally private and safe. Not to mention, I can (and do) organize them based on month and year, which simply is pleasing to look at. It scratches that ‘organization’ itch in my head. I know if for some reason I want to reread something that I remember possibly happening in August, I can find it must more easily now, than I would before by just flipping through a physical book.
Since I’ve kept to regular journaling, I’ve found my mind to be sharper, I am reading more often and more efficiently, and I am more confident in myself, mentally. I’ve noticed distinctive patterns in the ways that I think, which has made it easy to identify common threads, and predict when I may end up “thinking myself down a hole” as I sometimes do. I am finding myself more articulate and expressive in my everyday life. Most importantly, I have discovered a foolproof and safe way for me to explore anything that occurs to me as odd, important, uncomfortable, triggering, or even just interesting. I have a running list in my phone titled “to be explored in journal” where I can jot down thoughts that need to be broken down and unpacked in a journal entry. Some of these are quick and easy, some are heavy. Some have been sitting on said list for weeks. Having a list helps me feel in control. I can add to the list whenever I want, and it gives me a sense of control of anything that may be feeling not so right in my head. And by adding it to my list, I know that eventually I will address it.
For those of you troopers who made it this far, wow! This has been a doozy. I am unsure if anyone will enjoy this type of post, or if everyone is coming for the medical updates only. As always, please feel free to comment below to let me know! And again as always, anyone who is able to share my fundraiser, or donate, it may be found here: https://gofund.me/2e42a359
If anyone is truly curious, I’ve also put together a little list of the books I am reading, the books up and coming on my list, and the music I’ve been vibing to lately. I know I love to hear what others are consuming, by putting myself in their shoes. (Bonus points if I can manage to find a way to listen to and read something someone recommended as a pair!)
Books: I am currently reading the following:
The Body Keeps the Score, by Bessel van der Kolk
A nonfiction study exploring the connection between trauma and physical ailments. I am reading this for pretty obvious reasons. I’m about halfway through, and finding it enjoyable and informative
Verity, by Collen Hoover
Read the first chapter today, I’m hooked!
Fire Bringer, by David Clement-Davies
This was one of my favorite books as a kid. As I reread as an adult, I am underwhelmed and disappointed, but still pushing through.
I just finished reading “Red Sister” by Mark Lawrence. It started strong and I loved the premise (a fantasy novel about a convent that trains wayward girls to be assassins) but it lost some momentum about two thirds through. I struggled to finish it, was underwhelmed by the ending. I probably won’t continue the series, but I don’t regret reading it. It had its moments, and I did like the main character, Nona. The magic system was interesting. I wasn’t super thrilled with character building, world building, dialogue, or narrative. Just not for me
Books: Next up:
The Secret Life of Trees, by Colin Tudge
“A love letter to trees” I mean, it’s about trees, I’m going to like this one
The Seven Husbands of Evelyn Hugo, by Taylor Jenkins Reid
A historical fiction about young journalist who lands a job interviewing an aging celebrity and finds out that she has much in common with said celebrity. This book has been shoved down my throat on Facebook, Twitter, and my book channels on YouTube, so I’m giving it a go!
The Yellow Wallpaper, by Charlotte Perkins Gilman
The short story we selected to read and discuss for Book Club! An unsettling story about a woman who is locked away, and is slowly losing control of her mental faculties.
The Buried Child, by Sam Shepard
The play we selected to read and discuss for Book Club! A story about the destruction of a ‘typical’ American family
Listening: My music tastes lately have consisted of a lot of mood music. For me that means indie rock, soul music, festival bands and instrumental music.
On my Spotify you may find, in no particular order: Michael Kiwanuka, Cage the Elephant, Glass Animals, Mac Miller, Logic, Post Malone, the entire soundtrack of Black is King, Miike Snow, Remi Wolf, Alt-J, Donald Glover, Gorillaz, The Local Natives, The Unlikely Candidates, Saint Motel, and the Black Pumas.
I am excited to see what everyone thought of this newer style and theme! I am always open to feedback, so don’t be shy.
Thank you all for reading and be well. xoxo