It’s been a while since I wrote a more chatty, casual catch up post here! I’ve been using Substack to share my more personal thoughts lately – it’s been nice to explore and expand a little there, and have the option to paywall posts in the future that I want to keep a bit more private. But in honor of August being SMA Awareness Month, I thought I’d do a little bit more of a personal share here, since SMA has kind of been kicking my butt lately!

You may have noticed my posting here has been a little bit less regular than usual. I’ve gone down to four posts a week here (plus my weekly-ish Substack post), and sometimes the posts have gone up later than usual during the day. On weeks that I’ve traveled, despite my very best intentions of getting posts written and scheduled ahead of time, I’ve sometimes had no posts up at all. If you follow me on Instagram, you may have also noticed that I’ve been quieter than usual there, too.

Before I got my feeding tube ten-ish years ago now, I had a lot of trouble getting enough calories in during the day to make up for the amount I used up just living my life. My quality of life and energy were pretty bad, in hindsight, for about a year and a half or so. Getting my feeding tube and being able to supplement what I eat during the day with extra calories overnight was pretty life changing! But in the ensuing years, I have occasionally gotten the calorie balance wrong. To get those extra calories in overnight, I have to actually be in bed, hooked up to my feeding tube. And sometimes, I just don’t want to be. I want to be reading outside on my patio, or going to an event at a local bookstore, or finishing up a blog post. So I start to shift my bedtime a bit… but 15 minutes becomes 30 minutes becomes an hour and a half without me noticing.

For the last few months now, I’ve been stuck in one of those shifting later and later patterns. And those later bedtimes plus a summer filled with travel and other activities and stress has really taken it’s toll! I hit a real low – my exhaustion was at a peak, my energy was near nonexistent, and I knew that I had to make some changes, fast.

So I’m taking time off from here when I need to. I’m getting into bed early and reading (or playing Zelda). I’m clearing my social calendar or suggesting in-home hanging out rather than going out. I’m usually handling it well, but I’ve had my days where it feels emotionally exhausting, and I just want to feel “normal” again. I have to remind myself that these changes will take time to see results, but that doesn’t make them any less worthwhile.

The trickiest part about blogging is that I know how important consistency is to growing an audience – but sometimes, that’s in direct opposition to what my body needs. Not only do I want to keep up with the blog because I genuinely love writing and sharing with all of you, but I also know that keeping up with it is important to keeping it going. But I am experienced enough with SMA now to know that I can’t keep pushing my body beyond its limits. Sometimes, living with SMA does mean that things look different for me than someone without a chronic disease – that I need to be extra careful, and extra cautious.

All of this is to say that I’m not going anywhere, but I’m having to make choices about prioritizing my energy – and my health needs to come first. If I miss a day here or there posting, please keep checking back! I’m hopeful that things will be back to regularly scheduled programming sooner than later, but until then, at least you know why.