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Ups And Downs: Summer, Chronic Illness, and a New Normal
Hello friends, I’m so excited to be able to join A Chronic Voice’s link up this month. Summer is finally here, but unfortunately, that doesn’t mean a vacation from chronic illness. So I’m going to share what I’ve found helpful and how I’m coping with the new normal.
This link up is a way for chronic illness bloggers to connect by writing posts based on the same prompts. I found it so helpful last month to use the prompts as a jumping off point to not only write a blog post, but also to do some journaling for myself to process everything going on in the world and my own life.
This month, I’m using the prompts to share a little bit about what I’ve been up to lately creatively, what I’ve been struggling with healthwise, and how I’m continuing to adjust to the new normal.
The prompts for this month are Bothering, Demanding, Telecommunicating, Tolerating, and Nourishing.
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Mid-Year Reflections In A Year Of Pandemic: June Linkup
I can’t believe it’s been over a year since I joined A Chronic Voice’s linkup for the first time! I’ve been meaning to join this way for chronic illness bloggers to connect since, but life intervened (aka symptoms have severely limited my writing time). This month, I was thrilled that not only did I have the mental bandwidth to participate, but also that the prompts aligned with several things bouncing around in my head. Chronic illness in a pandemic presents its own unique challenges. (PS here’s my last linkup post.)
I hope you all are doing as well as you can be. Those of you who love the sunshine, I hope that you are also enjoying the warmer days. I love that the weather will be warmer (in upper 60s or 70s) for about three days, and then rainy for two days—this gives me a good dose of vitamin D when I can sit and walk a little outside.
The rain gives me a break from feeling like I *have* to get outside; we call that pressure to soak up as much warmth as we can “sun guilt” in the Pacific Northwest. The cottonwood trees had the air filled with tufts of white that looked like slow-drifting snow up until recently. Everything is blooming early, including my beauty bush, which is covered in bees and hummingbirds. (Ok, I’ve seen THREE hummers at once, so not exactly “covered!”)
In the world beyond my yard, things are moving ahead as Washington counties move into Phase 2 of coming out of quarantine/social distancing. (My county was added to the list June 5.) High risk populations are to “Stay Home, Stay Healthy” through Phase 3. I’ll talk more about this below.
Let’s dive in. The themes for this month are Searching, Hoping, Honoring, Traumatizing, and Responding.
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The Story Behind My New Blog Name: Starlight through the Storm
Ta-da! You may have noticed that my blog has a new logo as well as a new name! I thought I’d share a behind-the-scenes look at the inspiration behind both. I hope this will give you more insight into what you’ll find on my blog, as well as help you know a little more about the person who runs it.
I’ve literally been trying to pick a name before I even started blogging—over two years ago! (Yep, my blog had its anniversary in March and I kinda let it slip by. Oops!) I’m sure glad I didn’t wait until I had the “perfect” name picked before I started my blogging journey. (I think you should dive into blogging even if you don’t feel 100% ready.)
From poems to PR pieces, the titles have always been a challenge for me. So I’ve been brainstorming (for, ahem, years)…how to choose a blog name that sums up living with chronic illness, and not just surviving but thriving? I wanted to choose a name that sounded specific enough but was also broad enough that it would allow me to talk about all the things that bring me joy when my health turns life upside down—such as my faith, my love of words (and books!) and creativity.
Here’s the story behind coming up with a name for this blog, and why it’s special to me.
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How “Choosing” Helps on Bad Days + Free Printables
“Today I choose to”—these are powerful words to reframe thinking. I’ve started reminding myself that “I have a choice” to help me get through bad chronic illness days, and today I’m sharing my tips for “choosing” when we feel stuck. Plus, I’ve created three free printables to help you choose what you want to focus on, whether you feel stuck because of chronic illness, being at home because of social distancing during quarantine, or whatever challenges you might be facing.
I’ve found that I can tolerate most things if I feel like I have a choice. In other words, when I reframe my thinking and choose how to respond, I feel more in control and able to cope with a situation, even if that situation is far from ideal.
What got me thinking about this? Not too long ago I was lying in my recliner, where I spend a lot of my time due to dysautonomia, fibromyalgia, ME/CFS (myalgic encephalitis/chronic fatigue syndrome), and other chronic conditions. And I was frustrated because I did not want to be there, just watching TV. My mind was buzzing with all of the things I wished I could be doing. I didn’t want to rest, I wanted to do things!
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How To Stay Connected From A Distance
This post is all about finding creative ways to stay connected while we’re apart. I’ve been planning to write this post for awhile, and because of quarantine and social distancing, now seems more perfect than ever.
I’m sure everyone is aware that these are very unusual times everywhere. In case you’re interested in what’s going on in my corner of the world: I’ve been home since March 5 at my doctor’s advice to protect myself from COVID-19. On March 16, Americans were asked to stay home as much as possible to flatten the curve (all schools in Washington were officially closed that day as well), and March 23 the Washington state governor issued a stay-at-home order.
To everyone who is taking this seriously and protecting those of us with weakened immune systems: THANK YOU. We can do this, and I have some tips.
If there is one good thing in the midst of all this, it’s that people are realizing how challenging it can be to stay connected when you can’t leave your home. As I shared in a Facebook post, oddly enough, I’ve been able to be more social recently because people are free to talk to on the phone and join video calls.
Chronic illness is super isolating, and the chronic illness community has a lot of advice for everyone experiencing this challenge. (For more on what this looks like in day to day life for people with chronic illness, I recommend this article from The Mighty.)
This post is for everyone experiencing this temporary change due to quarantine and social distancing, as well as though of us who are chronically ill and have had to adapt long-term.
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Things I’m Doing For My Health Right Now
I’m a huge advocate of being proactive when it comes to your health, so I today I’m sharing some of the ways I’m doing this right now.
Lately, I’ve had the feeling that no matter what I do for my health, it feels kind of futile. That’s one of the sucky things about being chronically ill—you can do all the right things, and still be, well, chronically ill. Plus, I’ve been dealing with the cold weather (one of my triggers), health set backs, and—oh joy—new symptoms. It’s frustrating and ironic when your health is one of the things keeping you from being proactive about your health.
Thus, this blog post. I thought it would be helpful to record the ways I can be proactive about my health, and how these actions do help, even if just in a small way.
Some of the items on my list may look a little random, or not the kind of things you would associate with “health.” Most of these things aren’t specific to helping any one health condition, like my dysautonomia, fibromyalgia, asthma, autoimmune disease, ME/CFS, etc. But I’ve been trying to pay attention to what is zapping my energy or causing me stress. Viewing a problem as an opportunity to improve my health helps in two ways: 1) this helps me clarify a goal (less energy output or stress) and 2) this helps motivate me to make positive changes (by reminding me that this is important to my overall wellbeing). This clarity and motivation is enough to break through my brain fog and exhaustion so that I’m able to work on my health.
My hope is that this post will help you take a look at what you’re doing for your own wellness, or inspire you to think of new ways you can include more self care in your life. And when you make that list, I hope your reaction is similar to mine: I might be limited in what I can do for my health right now, but I’m doing the best I can.
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Getting Rid of Digital Clutter on my Ereader to Feel More Organized
I love finding ways to organize that are manageable with chronic illness.
I’ve been on a slow but steady mini-cleaning spree, and am pretty proud of myself that I’ve checked some items off my to-do list. While I love organizing, my dysautononia, fibromyalgia, and other health conditions make it super exhausting. I wish I could do more, but I’m getting better at pacing myself.
As I wrote about in an earlier post, I’ve found ways to declutter/organize despite limited energy, and it helps me to de-stress. Also, when so many things in my life are out of my control due to my chronic conditions, it helps to be able to have control over my space. When my environment is visually calm and organized, I feel more calm and organized too.
I’ve finished organizing my medicine cabinet and file folder (don’t worry I won’t subject you to a blog post about that!) and when I saw a recent blog post about digital decluttering your e-reader, I was inspired to go through my ebooks as well. This blogger’s goal was to read what she already had. That isn’t my goal (because…libraries!), but her goal did make me want to go through my ebooks, plus it remind me of something I want to try in the future. I’d love to clear out one of my shelves on a bookcase so that it become a designated space just for my unread books. This would make them easier to find—sometimes I forget where I have books squirreled away! A project for when I have a little more energy, and space!
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Interesting Around the Web – August 2019
Hello readers, I have rounded up some interesting articles and posts from around the web!
I’ve been taking it easy after a trip to a museum totally wiped me out for a week, so it’s been fun to discover interesting reads online to keep me occupied. I also got to contribute a quote to another blogger about how important to advocate for yourself when doctors are dismissive or misdiagnose you (one time a doctor told me I didn’t have asthma… when I clearly do and have since birth!) I was also delighted to discover that another blogger read my latest My List of Little Joys posts and was inspired to write a post of her own on that theme.
I hope you all enjoy these links and have a wonderful Labor Day weekend!
