Another time, on another day. It's OK.
I've been doing micro-blogs, if you will, on my Facebook page. I honestly have a ton of things running through my mind to write a blog post about, plus I need to do a magazine review this week (crossing fingers), but if there's anything I've learned in the past month, it's to recognize what's most important on my list for the day and not plan too far ahead. That's a novel idea for me, a person who in the past meticulously mapped out plans and charted progress.
Many of you have heard of the Spoon Theory, a wonderful story about what it's like to be chronically ill. Here is my very own spoon, bought for me by Rick:
|Bought via Etsy a while ago but now I can't find the artist. Dang.|
However, there's a significant problem in posting online when I always feel like I've been hit by a truck of needles. If I post something here, on Facebook, or elsewhere, many people automatically think, "oh good, she's finally well" ... and get frustrated with me when the next day I'm not.
Unfortunately, making a post or "liking" a few items doesn't mean I'm 100%, or even 50%. It usually means I'm desperately trying to connect with another world beyond my bed or my house for five minutes to distract myself. What people see is a tiny snippet of my day. They don't see the cold sweats, the fevers, the 30+ pills, the truly disgusting and hideously expensive liquids, my struggle to do something as simple as dry my hair.
|The majority of my meds. Some are taken three times a day, most at least twice. And some aren't shown.|
I completely understand why people are just so OVER IT with those they know with a chronic illness. People naturally run from what they're afraid of, which is not to say anyone is weak for not sticking by, but that they are human. The ill are human, too, but they don't feel like it many times. As time goes on and our symptoms don't go away or a new malady gets added, it can really be hard to reach out to anyone or even admit to ourselves that things are just stalled. We don't want to be a burden, a drama queen, a negative source of energy. We want to be "normal", but we also want to be heard, understood, and loved anyway.
I've also recognized that it's incredibly easy to let illness become my first priority, which is backward. It should be HEALING that is my first priority, and there's quite a lot of difference between one and the other. Focusing on each aspect of the illness(es) can make anyone depressed. Just looking at the bottles above can seem completely overwhelming, until I look at them again and realize, these are what I need to get WELL. Stop taking things, and it all goes to hell, so I try very hard when I'm taking those pills and getting those shots to think "this is one more step forward", even when I feel miserable and like I'll never be right again.
I've done a lot -- a LOT -- of research on Lyme, Babesia, migraines, and a lot of it might seem dire. Many people diagnosed in late stage are just going to have to come to terms with this the rest of their lives and focus on living at 80% or 50% and making the best of it. It's impossible not to occasionally wallow and cry and say, "WHY ME?". Human. Understandable. But there has to be something good out of your day that you can think of in the midst of the crap, even if all you can think of is you're glad your pillow is soft. Millions of people don't have a soft pillow. That's a very simplistic way of looking at it, but if that's all you can come up with at first, that's fine.
Just try, each day.
Lori Anderson creates jewelry and bead kits as well as collaborative mixed media art with her son, Zack. Visit her shops by clicking on the right side bar of this blog (please and thank you!). She is also the creator of the Bead Soup Blog Party® and author of the book "Bead Soup" via Kalmbach Publishing.