Things I should be doing, things I’m actually doing, and the finding of a much needed sign……..
Okay, it’s day 26. I imagined that – by now – I’d have learned new things, read a book a day, cleaned the apartment six times (HA!), made things better in our weird new environment.
The reading hasn’t gone badly. But I’m a fast reader and started diminishing my “to read” pile very quickly. So, I stopped for a bit. I reeeeeally shouldn’t have done that.
In my break from books, I re-downloaded “Minecraft.” If you’re not familiar with this app, it’s a fun game of building and creating and…..ugh. I only play in creative mode, where you’re not constantly trying to stay alive. My point is that I SHOULD NOT HAVE DONE THAT. I’ve spent a humiliating amount of time working on “my world.” Granted, I’ve done this while occasionally listening to audiobooks, but still. It’s a time-sucking, black hole of app playing. But it’s fun. But ugh. 🤦🏻♀️ (See included ridiculous screenshots).
At the start of the “staying at home,” I also shared the link to taking online classes for free. In my enthusiasm, I registered for two classes. One about the FDA and the other about ancient Egypt. They’re great classes, interesting material and relatively easy to follow along. My mistake? Trying to get through the lessons on days when I haven’t slept. That’s pretty much every day. One afternoon (after a completely sleepless night), I was trying to follow the FDA lecture and everything started to blur. Thinking a change would wake me up, I switched to the other course. The professor started enthusiastically talking about maps and virtual walking tours and …….. When I woke up, I had no idea where I was in the class, or in real life.
It feels like more time has passed. On a normal day, if my husband and daughter were at work, (and if I physically felt up to it), I might take a walk. If our gal was home, we’d walk “the loop.” But it feels like I’m becoming one with my rocking chair.
Being city dwellers, subway takers, and relatively fast walkers – in the good old days of three weeks ago – things are not as they would be. I’ve noticed a huge change in my body. When I know I have to work on a show, I always start slowly. I can walk to the school, which is great. I take my time and give my body the chance to get used to working harder. By March 11th, I was months into working on the school musical. I was constantly walking and moving, I’d hit my stride, I was in a groove. Suddenly stopping was like having the rug pulled out from under me.
I know you’re all feeling the effects of having to stay at home too. Anyone whose body starts at a chronically ill disadvantage has to work harder to get going, to keep going. I feel my body regressing to the way it feels when I’m flaring or when I’m post-flare. Not a good thing. Everyone living with long term health issues will know what I mean. You know how you feel in these moments, how your illness slows you down and keeps you there for an unknown amount of time.
I wish…..and I literally NEVER thought I’d say this, EVER….. I wish I still had an incentive spirometer. For anyone who thinks that sounds familiar but you’re not quite sure what it is? It’s that device they give you when you’re admitted to the hospital to help with your lung capacity (see picture). It’s a way to strengthen your lungs, a way to keep pneumonia from setting in. Being bedridden or mostly immobile decreases your lung capacity. Think of what you’ve been doing day to day. Have you been breathing as deeply or actively as you were before? I know that I haven’t. My respirations are so shallow, it’s harder to take a deep breath at the moment. But I have always hated using them. I’d do it, grudgingly. With multiple admissions over the years, I had a few of them. But I’m pretty sure I threw them out in an act of stupidity. “When will I use this again?” In the year 2020, during a pandemic. But, alas, it is not meant to be. So now I’m just deep breathing throughout the day.
Look at me! I can’t even get the blog up on time! Two days late again. I’m sorry for that. I’m trying to motivate myself to do different things. It was actually lovely yesterday, because my gal and I started our garden project again. Last fall, we planted seeds just to see if anything would grow. It was late in the season, so we didn’t have long to enjoy it. We didn’t care though. It was so much fun to work on.
When she suggested that we start it again, I agreed immediately. In addition to having something new to do, it also makes her so happy. ☺️ We’ll see what happens. In a completely unexpected turn of events, while looking for other supplies, I found a small tin of seeds for a butterfly garden. We didn’t remember having it. But I took it as a sign from someone special that good things abound, even in these crazy times.
It’s perspective. Even as I’m writing this, I feel like my brain is recharging. Will I sleep more? Not likely. Will I reinvent myself? Who knows. Will my apartment get the overhaul it’s needed for twenty years? Noooooooo. But so what?
I needed to find that butterfly garden pack. Desperately. I sincerely hope that each of you finds yours.
We’ll get through this.
Wishing each of you health, calm, and at least one thing that makes you smile every day. ❤️
Peace and painlessness,
Beck❤️
#thisiswhatsicklookslike #rsd #crps #arachnoiditis
painintheBECK 