A Day In The Life: Working From Home With AS
I know that everyone has a very different situation in terms of work, family life, and disease management, but I wanted to share what it looks like to live with ankylosing spondylitis while working full-time from home (this also goes for anyone who is working in quarantine). Quick heads-up that I don't have kids, so that's one less major stressor I have to deal with.
A little bit about me: I have the luxury of being able to work from home as a full-time writer and author. I've been working from home for the past two years.
I do the equivalent of a "full-time" workload — but I do it on my own schedule. I write books, articles, run a magazine called Luna Luna, and manage social media; my job is very fragmented. I don't have financial help from my family, so work is important to me (and writing makes me happy).
The morning: stretching, sunlight, and work
I tend to wake up on my own, according to my body‘s internal clock. That's usually somewhere between 9:30 and 10:30 a.m. Yikes — just reading that makes me feel indulgent. Being able to earn money from home is definitely a luxury and one that I weirdly feel guilty about having. I just have to remember that I live with an autoimmune disease and that my body needs different things than other people's bodies. (I’m also of the belief that the 9-5 is totally unnatural and that society has just become blind to this.)
I wake up and I immediately get to stretching, which helps me begin my day. I like to feel my blood flowing, and I like to take several deep breathes to expand my chest and let in a lot of air. I start by doing a downward dog, and then I arch my back in and out for several minutes. If the pain is really bad, I usually take a hot shower first thing in the morning and then apply some Icy Hot afterward.
I’m pretty slow in the morning, so I wander down to the kitchen and stretch my arms and legs while I make some coffee. As the coffee brews in my French press, I’ll rotate my neck and let the sunlight and the air in. I’m a big believer in holistic wellness. I try to let nature do its job.
It won't cure my disease, but it definitely lifts my spirits. And my stress levels are directly connected to my disease flares. That all might sound like an aphorism or a cheesy statement, but there’s a lot of research (like this and this) that connects sunlight and earth to wellness, particularly inflammation and autoimmune disease. A big part of using vitamin D and sunlight keeps my circadian rhythm’s healthy, and it stops me from spiraling into self-pity and feelings of "why me." I believe nature provides perspective and comfort. I also have an insomnia issue, so when I look at the sunlight in the morning, the trains my brain to feel awake and alert.
Around this time I usually drink coffee (non-dairy, as I'm intolerant to milk), but I also like to eat a very small breakfast, like almond milk yogurt.
Morning into the afternoon: work, short breaks, and workouts
From the morning to the beginning of the afternoon, I’m usually writing, checking emails, keeping up with my ankylosing spondylitis communities, or doing some sort of freelancer administration work. I have longer-term deadlines and daily deadlines, so I’m always juggling between clients and their needs.
A big part of why I left my last job was that it was ridiculously inflexible and my stress levels were so through the roof that I was in a constant flare-up that destroyed both my body and cognitive abilities. So now I allow myself to get up here and there to stretch, get outside, and drink some water during the day. I find that these small rituals not only help me maintain sanity, but they actually force to move and stretch.
By the late afternoon, I usually make a little bit of an early dinner or a bigger lunch. I’ve reached for plant-based foods in the past few years. I wouldn’t call myself a vegetarian, per se, but I’m certainly leaning in that direction.
I love to fill my plate with dark leafy greens, and loads of omega-3’s. There’s a lot of evidence that plant-based foods (found in the Mediterranean diet) can help relieve inflammation and improve energy levels. I eat a lot of chickpeas, kale, arugula, tuna fish, tofu, and vegetables of all sorts. Throughout the fall, I tend to roast a bunch of veggies, like turnips and potatoes. I’m also a big fan of making spiralized veggies out of squash. I eat loads of all olive oil and avocado, and I drink a ton of tea all day long (I recommend peppermint for digestive issues, turmeric for anti-inflammatory purposes, and valerian root for better sleep).
In the mid-afternoon or the early evening, I make a point to do a workout. I try to do it earlier in the day, but I’m usually too stiff. Usually, I turn to walking, swimming, watching a YouTube dance tutorial, or another community fitness class (which are all on Zoom these days). I try to keep it moderate intensity, and I focus on getting stronger and making sure that I work up a sweat.
Even though it might be difficult, and my energy levels may be basically nonexistent on some days, I find that getting movement every single day keeps my disease from progressing in a way that I can’t control. I currently don’t have health insurance, so I have to be creative with how I take care of myself through food and movement and stress relief. I feed, nourish, and exercise my body — even when it's hard — and it responds in kind. Movement helps my pain levels go from an eight or nine to a four or five. I realize I'm lucky to have that mobility.
The evenings: CBD and stress-relief
I’ve also started using CBD in the evenings as a way of relieving stress and reducing some of the pain I feel inevitably by the end of the day and my lower back and my hips. I have to say — I love it. It stops my excessive tendency to worry, and it takes the edge off my pain. I was resistant to trying it for years, but I'm glad I finally did.
I hold my evenings very sacred. As a freelancer, I’m very tempted to work (my mind is often thinking of my to-do list), and I often do work, but I generally like to make sure that my evenings are pretty free. I try to implement stress-relieving activities, like drawing or journaling, or dancing. I often turn to ASMR videos because they’re soft and gentle, and they make me feel like I’m socializing but I don’t have to leave the house!
I also write creatively during the evening: poetry, letters, notes to myself. (In fact, I wrote my entire new book, The Magical Writing Grimoire, after work on weeknights!)
For me, my days are a blend of productivity and rest, bursts of energy, and slow intention. There are certainly days where I can’t get out of bed, brain fog washes over me, and work seems impossible. But for me, I find empowerment and fulfillment from activities, projects, and my workload. I just make sure to take care of myself, eat well, and rest in between — especially without insurance. I know that not everyone has the opportunity to rest, work, or eat as well, and I am always advocating for people to be able to have the access that I do.
Do you use the word disability to describe your AS?