Last Friday, I had my 2nd telehealth call with my pain management doc. It was a good time to speak to him. Over the preceding week, my left leg had been getting worse. The outer part of my left leg, from my knee to my ankle, felt raw and hurt. My clothes hurt as they skimmed across my skin.
Though my leg was the worst, my left hand and arm were flared up as well. My palm felt like I’d burned my hand on a hot stove. Super sensitive and uncomfortable.
I wish I’d been able to have that call yesterday. Of course it really kicks off after my one monthly call.
By Sunday afternoon, my knees started up. They felt like someone had injected them with warm, water and pain-filled balloons. How gross is that description?!? They felt sore and thick. And it became hard to walk. That feeling lasted until yesterday. But that’s when my knuckles started to feel the exact same way: injected with warm, water pain balloons. So, by way of a change, I decided to rest as much as possible. 🙄What else can I do? (As I wrote that, I busted out laughing. Literally, what else can I do?!?).
Today, my face (in spots) feels like I bumped it on something. I’ve walked into open cabinet doors and banged my head 100 times, so I’ve done the legwork on how a bumped head/face feels, 😂. It’s my left eye brow, my right eye socket and cheek. This has to be a sinus issue, but – come on universe – let’s let up on the pain pleeeeease.
During Friday’s call, my doc asked if I’d done anything different that might have kicked up the flare. Big or small. Honestly, one day bleeds into the next and NOTHING changes.
If I’d been working on a show, I could pinpoint the exact scenario that contributes to my flares. Walking and standing more. Carrying bags. Stooping over tables, sewing or painting. But now? Nothing.
That demonstrates the precarious balance of a chronic illness. Sure, some things are bound to start things up. But other days? You can wake up okay and be down for the count in two hours. Out of nowhere. And it’s complete crap. That’s also a scary thing about living with this. I don’t know when or how bad a flare will hit me.
I haven’t had one like this for a while. Nearly full-body when I’m not running around working on stuff? I hate these flares. It hit me hard. I’m coming through it, with the help of extra meds and – shocker – more rest. 🤦🏻♀️ LOL.
I try to gauge how I’m feeling in the morning. Once I’m fully awake and having breakfast – after I’ve taken my morning meds – I stretch and see how bad each body part feels. It’s not always accurate or lasting, but it gets me to my first cup of coffee. Nothing will keep me from my coffee. Trust me when I say that I’d crawl to it.
As I was working through this post, trying to find a comfortable way to sit with my knees propped up by an extra cushion, the song, “Better Days” tuned into my head. The song by Eddie Vedder. It’s a favorite. (I’m including it below).
The other night – in tears because of the pain – I was suddenly hearing that song. It was a stark and sudden reminder. We don’t know what’s coming in the next months. We don’t know what’s coming an hour from now. At this point, I firmly believe that we’re all just flying by the seat of our pants and I need to stay focused on what’s directly in front of me.
From my rocking chair perch in our living room, I can look straight through to the other end of our apartment. In my line of sight are the great loves of my life. Each of them working. She’s exactly like him, it always makes me smile when I think about it.
I don’t know what “better days” look like in the current world. Is it a decline in Covid cases? Less recorded deaths? Is it knowing that each of you is okay? Is it knowing that if you’re not okay, that you at least know that you’re not alone? I accept any good thing now.
I’m grieving for the chances I won’t get to wish my students luck as they graduate. To thank the younger ones (in person) for their hard work on our show that wasn’t to be. For the opportunity to celebrate all of them, as I’d been planning to. As our gal pointed out, “these are the kids who will definitely come back to visit.” And she’s right. Even if they don’t, I can still send my good wishes and gratitude out into the universe.
All of this hurts and surprises and stops us in our tracks. Life, health, lack of health – all of it. I can only attempt to find a spot in the middle of the scale and maybe – maybe – balance myself. I’ll fail, of course, and have to manage the flares. But even the worst flares have to ebb at some point. That’s what we’re going with, that they HAVE TO. (Say it with me, everyone! They have to.😉).
Wishing each of you calm, comfort, and safety. Here’s to better days. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #betterdays #eddievedder