Have you ever participated in one of A Chronic Voice’s writing linkups for bloggers? It’s essentially a way to connect with other bloggers, and every month, there’s a set of new prompts to write about.
This April linkup’s prompts are the words: tiring, educating, receiving, giving, and quieting. They don’t necessarily have to be about chronic illness, but they sure can be. Keep on reading to hear how these topics have impacted my chronic illness and my life of late.
Tiring
Lately, sleep itself has been the dream. I’ve recently been able to tell when my mind slips unconscious—something your body shouldn’t realize. Not long ago, I was able to collapse into bed and gather my spoons for the next day without even trying.
But now, the simple act of sleeping costs a spoon or two, depending on how willing my mind and body are that night.
Throughout my “rest” I catch myself tossing and turning.
I heavily flop over to one side, but it instantly becomes unbearable, so I spin to the other side, accidentally bringing a tangled web of blankets with me, likely prying them off my husband’s sleeping body.
If my tornado movements have woken him, he hasn’t said anything.
I’ve been trying different methods to relax my mind and body before bed. I’ve tried deep breathing, guided meditation, and yoga. These haven’t had great results.
I try playing a relaxing game on my phone, which I know is said to be a no-no. But honestly, a game like Wordscapes uses enough brain juice to tire me without requiring so much to keep me awake. For me, it’s worked better than meditation.
I’ve even resorted to essential oils—something I’ve never really been interested in. But at one of my infusions, my nurse gave me two plastic bottles with a swab of oil-dipped cloth in each. Lemon and bergamot. At this point, what do I have to lose?
And some nights, when I know I have an early morning, I just resort to Melatonin. I thank God that hasn’t lost its effect.
If anyone reading this has tried and true methods for inducing sleep, please, please comment below and share them with me. I want to stop dreaming of sleeping and go back to having my weird normal dreams.
Educating
I never knew that starting a business was a dream of mine. In fact, when I was going to school for Business Administration, I was bored in my entrepreneurship class because I never wanted to start a business.
But now, I’ve come to realize that it’s my dream job. I’m happily obsessed with writing and I’m passionate about health and chronic illness advocacy.
Isn’t it funny where life takes you?
Naturally, with starting a business, there’s much research to be done. I’ve been stuffing my brain with social media strategies, how to pitch to ideal clients, how to keep track of expenses…the list goes on and on.
And it’s been so exciting! I’ve always loved learning and improving my skills, so when I had to drop out of college last summer when I went back to get a second degree, I was pretty devastated.
I had gone back to pursue a degree in nutrition to become a registered dietitian, but my flare got so bad that I couldn’t retain anything I learned in class. I ended up spending a week in the hospital and dropping my classes because I was failing all my tests.
But I’m not bitter about it. Now I have my own business that combines writing and health, and I get to learn along the way, all from home. It’s a dream come true.
Receiving
Along with starting my medical copywriting business, I also became an Ambassador for a start-up company called Gali Health. The company is creating an AI-powered app that will proactively help IBD patients manage their disease. (I wrote a whole blog post about it that you can check out here).
Ten ambassadors from around the world and I have come together under this common cause. We test the Gali app every day, providing feedback on its ease of use and the content the AI algorithm pushes into our feed.
This mission is incredibly fun, empowering, and humbling, but my favorite part hasn’t been the direct interaction with the app and its content. The best part has been connecting with others like me. All the ambassadors have IBD, but our journeys all look different.
I know there’s a lot of voices out there saying that the internet and social media are distracting people, millennials in particular, from experiencing real life. But I’d argue that’s inaccurate in the chronic illness world.
Gali and other social media connect me with others who know exactly what I’m going through.
I’ve met some of the most hard-working, genuine, inspirational people through social media and working with Gali. These people—ambassadors and Gali employees—are absolutely incredible.
I’ve had so many wonderful conversations with people I otherwise wouldn’t have met. I’ve been receiving so much support and encouragement from this tribe.
I’m so thankful to be a part of Gali Health’s life-changing mission. The app will become available to the public in a few months, and I know it’ll impact thousands of more patients as it gives them the education, inspiration, and community they seek.
Giving
Like I mentioned above, I’ve received so much love and support from everyone involved with Gali Health. And what’s been just as wonderful is that I’ve been able to give back.
As an Ambassador, not only do I provide feedback on the content that Gali pushes into my feed, but I also get to create and curate content for the app! I wade through the world wide web of articles and personal anecdotes of life with chronic illness, and I submit them to the Gali database.
The app is AI-powered, so the more content we send and write, the smarter the technology gets. This helps the algorithm to only put the most relevant articles into the users’ feed depending on where they are in their health journey.
This has been a wonderful opportunity for me to share links to several of my Comical Colon posts that others may find helpful. My dream is to work from home full-time from health writing, and I hope that by contributing to Gali’s database, I will gain exposure to one day do this and help others simultaneously.
I’m especially excited to create content for the app. One of the major purposes of us eleven ambassadors is to find gaps of content and create articles, advice, or tips to ensure that when the app becomes public in a few months, there are few content gaps.
With Gali Health, I get to be a part of something greater than myself.
Sharing my content and personal stories with others is one of the most empowering things for someone with a chronic illness. It’s a kind of proof that our diagnosis isn’t in vain. It reminds us of our purpose—whatever that may be.
I know for myself and many other chronic illness advocates, our disease contributes to our purpose. It reminds us of how crucial it is for us to raise awareness and to share our stories. This might be life-saving for others, and it’s likely to be life-changing for ourselves, too.
For those with a chronic illness, giving makes us stronger.
Quieting
As the world warms up at thaws itself from a particularly long and cold winter, I find myself spending more and more time outside. Writing. Walking. Sometimes, just sitting, soaking up the sun.
I’ve always been aware that nature and the outdoors calm me, but my diagnosis truly magnified this realization. I feel like the longer I sit in the sun, the quicker I collect my spoons.
My husband would be appalled at the length of time I spend sitting in the sun (with sunscreen, of course!). He’d probably say something like his skin is going to melt off as he moves into the shade—or back inside.
But being in the sunlight quiets my mind. Even if I’m working and writing articles, I don’t feel stressed or anxious.
For me, being outside is like a happy, relaxed, one-glass-of-wine buzz.
Spending time outside, placing my hand on the earth or in a shallow stream, is incredibly therapeutic. It’s peaceful. I remember to practice mindfulness.
Being outside—and it doesn’t have to be anywhere special. Under a tree in the grassy common area will do—is the ultimate practice of self-care for me.
It’s the perfect place for me to write in my notebook. Or write in Google Docs offline because our apartment’s internet bandwidth doesn’t reach farther than our front door. It’s a mini-vacation. A relaxing getaway from the ugly popcorn walls of our apartment.
It reminds me to produce content, which is really the foundation of my business. It’s a gentle reminder that a few hours off social media is beneficial. And the longer I stay outside, the less and less I want to return indoors.
But eventually, I do. And the following morning, one of the first things I do is check the weather so I know how many layers to bring outside with me that day.
It’s a date with myself, the ultimate practice of self-care, my favorite method to collect spoons, the healthiest and most effective buzz.
